Best Practices in Programmatic Management of Drug Resistant Tuberculosis PMDT in India Publication PDF

This publication is a five-part series on “Best Practices in Programmatic
Management of Drug-resistant Tuberculosis (PMDT) in India” that Citizen

News Service – CNS did with support from Lilly MDR TB Partnership in
India during January-June 2013. The views expressed in these articles are
those of the commentators, and the persons interviewed by CNS.
Editor: Shobha Shukla – CNS
Email: shobha@citizen-news.org
July 2013
DISCLAIMER: This report has been generated in consonance with CNS and Lilly MDR-TB
Partnership, a Corporate Responsibility initiative of Eli Lilly and Co. (India) Pvt. Ltd. after a
survey and a detailed research to generate recommendations on Management of Drug
Resistant Tuberculosis across India. This report so generated focuses on best practices in
PMDT at selected sites in India. The recommendations and the information of the
infrastructure shall in no way be construed as promotion of specifically covered institutions.
This report shall in no way be considered a substitute to any personalized advice of Health
Care Providers on the disease state of an individual.
The interviews of Nurses, support staff or HCPs are only limited to suggestions and the best
practices of various institutes and hence in no way intended to harm image of any institution
that does not have practices that are alike. The expression of opinion or view point are
general in nature and any reference to any person, living or dead, is coincidental and with no
intent to harm any personal interest.
The report conceived after survey and research and public disclosure of the same has been
done based on the consent of respective stakeholders including but not limited to picture/
images of Patients, Nurses and HCPs.
This report has been generated in Public interest and for the wellbeing of the society.
Citizen News Service - CNS

C-2211, C-block crossing, Indira Nagar, Lucknow-226016. India
M: +91-98390-73355 | E: editor@citizen-news.org | W: www.citizen-news.org
Best Practices in PMDT in India | July 2013

2
Introduction 4
Part I: Infection What did we find at PMDT sites we visited? 10
control Recommendations 21
What did we find at PMDT sites we visited? 24
Part II: Counselling
Recommendations 47
RNTCP approved diagnostic tests in India 50
Part III: Diagnostics Flow of specimen from periphery to C-DST laboratory 53
and laboratory Costing of unit test at a laboratory 54
services What did we find at PMDT sites we visited? 55
Recommendations 71
Part IV: Treatment What did we find at PMDT sites we visited? 75
and care Recommendations 93
When he vomited blood one day 96
A pain in chest 97
Persistent low grade-fever & cough 98
Part V: Personal stories of MDR-TB/ XDR-TB patients and
Listen to me as I do not want anyone to go through what I am 99

experiencing
Adhering to treatment, but lost hearing power irreparably 101
TB rebounds, with drug resistance 102
From private to PMDT: Journey of a priest from TB to MDR-TB 103
“I wish if there was a vaccine to control its spread…” 104
Deserted by family, divorced by wife, PMDT become his new family 105
With family’s support, he is determined to complete the treatment 107
Aspiring for size zero, acquires TB 109
Instead of heralding social change, she turned positive for TB 110
Surviving bravely despite TB, diabetes, other health concerns 112
He never thought he can ever get TB! 114
Misdiagnosed as typhoid but had TB 115
TB is not only a poor person’s disease! 117
Going to college with treatment alongside 118
MDR-TB survivors
After a whirlwind search for cure, found relief at PMDT site in Delhi 119
Blew up more than cost of MDR-TB treatment in private sector 120
Deserted by husband’s family, she needs an oxygen cylinder to 121
breathe
MDR-TB survivor also bravely battles against a rare genetic disease 123
We can stop TB: With a little bit of love and a pinch of will power 126
Annexure I Patients’ Charter for Tuberculosis Care 129
Annexure II What PMDT Guidelines say on infection control? 133
Annexure III What PMDT Guidelines say on counselling? 134
Annexure IV What PMDT Guidelines say on diagnostics and laboratory 135
services?
Annexure V What PMDT Guidelines say on treatment and care? 137
Annexure VI What PMDT Guidelines say on treatment outcome definitions? 139

3
Despite challenges of health systems and the biggest TB disease burden globally, India
has certainly come a long way forward in its response to providing access to standard
WHO recommended anti-TB treatment through Directly Observed Treatment
Shortcourse (DOTS) to more than 14.2 million (1.42 crores) people across the country.
Despite successes TB continues to remain one of the key public health priorities in
India. Drug-resistant TB is one of the concerns and India envisions providing universal
access to quality diagnostics and treatment services for all patients with drug-
resistant TB in next five years.
CNS with support from Lilly MDR TB Partnership in India embarked upon this mission
to document best practices and lessons learnt from some select sites of Programmatic
Management of Drug-resistant Tuberculosis (PMDT) in India. We conducted close to
200 key informant interviews with key stakeholders – cured patients of multidrug-
resistant TB (MDR-TB), MDR-TB patients currently on treatment and their family
members, extensively drug-resistant TB (XDR-TB) patients, nurses, doctors, laboratory
technicians, microbiologists, PMDT site nodal officers, state and district TB officers,
among other stakeholders. We took photographs too of PMDT related services. All
interviews and photographs were taken after due consent in English or local
vernacular languages.
CNS analyzed the evidence thus generated and is coming up with specific
recommendations to help achieve universal access to quality diagnostics and
treatment in PMDT across the country. CNS has produced five-part series of “Best
Practices in PMDT in India” on following specific themes:
 Infection control
 Counselling
 Diagnostics and laboratory services
 Treatment and care
 Personal stories of people with drug-resistant TB and
MDR-TB survivors
We are very grateful to the (current and cured) patients of drug-resistant TB, their
family members, care providers and other key stakeholders who consented to be
interviewed and helped us learn vital lessons. Our sincere thanks also to: Dr KS
Sachdeva, Central TB Division; Dr Jayant Banavaliker, former Director, RBIPMT; and
Sunita Prasad, Lilly MDR TB Partnership India for their constant support and guidance.

4
THE INITIATIVE
The initiative “Documenting best practices and lessons learnt in rolling out MDR-TB
services in India” began with the following goals:
• Documenting best practices and lessons learnt in rolling out prevention,

treatment, care and support services related to multidrug-tuberculosis (MDR-TB) in 14
government and private/ non-government sites in 6 Indian cities (see below).
• Drafting priority recommendations for achieving MDR-TB related targets set by
the Revised National Tuberculosis Control Programme (RNTCP) of the Government of
India by 2015. These recommendations will be based upon key informant interviews
and focused group discussions with people receiving MDR-TB services, care-providers,
and other key experts.
• Analysing the qualitative data collected and producing an advocacy document
to help RNTCP achieve its targets related to MDR-TB by 2015 or earlier.
• Publishing and syndicating article series based upon the interviews on the
above MDR-TB sites through CNS and other networks (such as Stop-TB eForum)
• Producing a photo essay documenting a range of issues related to MDR-TB
services.
• Disseminating advocacy document and key learning and recommendations at a
national media workshop in Delhi.
• Organizing public exhibitions of the photo essay through projection.
METHODOLOGY
With informal discussions with Dr KS Sachdeva, Additional Director General, Central
TB Division, and Ms Sunita Prasad, Lilly MDR TB Partnership and PPP Focal Point of
Partnership for TB Care and Control in India, CNS selected PMDT sites that had
significant number of people seeking treatment and care for drug-resistant TB, and
were functional since past few years (except one new PMDT site that was a year old).
We also selected national reference laboratories (NRLs) and state’s intermediate
reference laboratories (IRLs) along with a private diagnostic laboratory of repute.
Innovative approaches such as home-based care models or other centres that were
doing inspiring work to enhance positive outcomes of PMDT sites were also included.
We covered 14 sites in 6 cities (see table below) during January – March 2013 and
conducted over 200 key informant interviews. Apart from these sites, we also
interviewed cured MDR-TB patients in Delhi and Gujarat. These interviews were
transcribed, translated and qualitative data analysed to produce a 5-part series on
infection control, counselling, diagnostics and laboratory services, treatment and
personal testimonies of MDR-TB and XDR-TB patients (including cured patients).
All photographs and key informant interviews were conducted after seeking due
consent. Consent forms were available in English, Gujarati, Bengali and Hindi. We
credit CNS team members who worked hard on this initiative: Shobha Shukla (editor),
Mukta Srivastava, Rahul Dwivedi and Bobby Ramakant.

5
S.no. Site Facilities (laboratory, Diagnostic tests
treatment and care)
1 All India Institute of Intermediate Reference - Solid culture, Liquid culture, LPA
Medical Sciences Laboratory (IRL) and treatment routinely used
(AIIMS) Delhi and care - Xpert MTB/RIF for research
purposes
2 Calcutta Rescue Counselling, DOTS and support
Centre, Kolkata, to PMDT site in Kolkata (KS Roy
West Bengal Hospital)
3 Civil Hospital, BJ Intermediate Reference - Solid culture, Liquid culture, LPA
Medical College, Laboratory (IRL) and treatment routinely used
Ahmedabad, and care
Gujarat
4 Dr Dang’s Lab, Delhi Diagnostics and Laboratory - Solid culture, Liquid culture, LPA
services (private) routinely used
5 K S Roy Hospital, Treatment and care
Kolkata, West Bengal
6 King George’s Intermediate Reference - Solid culture, Liquid culture, LPA
Medical University Laboratory (IRL) and treatment routinely used
(KGMU), Lucknow, UP and care
7 Lala Ram Sarup National Reference Laboratory - Solid culture, Liquid culture, LPA
(LRS) Institute of (IRL) and treatment and care routinely used
Tuberculosis and - Xpert MTB/RIF for research
Respiratory purposes
Diseases, Delhi
8 Lok Nayak Hospital, Xpert MTB/RIF available, Xpert MTB/RIF routinely used
Delhi Treatment and care
9 Murshidabad District Treatment and care (new PMDT
TB Hospital, site)
Murshidabad, West
Bengal
10 National JALMA National Reference Laboratory - Solid culture, Liquid culture, LPA
Institute for Leprosy (IRL) and treatment and care routinely used
and Other - Xpert MTB/RIF, DNA Chip, DNA
Mycobacterial Sequencer, Mass Spectroscopy using
electron microscope, for research
Diseases, Agra, UP
purposes
11 New Delhi TB Intermediate Reference - Solid culture, Liquid culture, LPA
Centre, Delhi Laboratory (IRL) and DOTS routinely used
12 Rajan Babu Institute Treatment and care
of Pulmonary
Medicine and TB
(RBIPMT), Delhi
13 St Stephen’s Counselling and home-based care
Hospital’s Home- services to patients enrolled in
based care of MDR- PMDT sites in Lok Nayak Hospital
TB patients, Delhi and RBIPMT Delhi
14 Vallabhbhai Patel New upcoming PMDT site
Chest Institute,
Delhi

6
S.no. Site Facilities (laboratory, treatment
and care)
1 All India Institute of Medical Sciences (AIIMS) Delhi Intermediate Reference
Laboratory (IRL) and treatment
and care
2 Calcutta Rescue Centre, Kolkata, West Bengal Counselling, DOTS and support to
PMDT site in Kolkata (KS Roy
Hospital)
3 Civil Hospital, BJ Medical College, Ahmedabad, Intermediate Reference
Gujarat Laboratory (IRL) and treatment
and care
4 Dr Dang’s Lab, Delhi Diagnostics and Laboratory
services (private)
5 K S Roy Hospital, Kolkata, West Bengal Treatment and care
6 King George’s Medical University (KGMU), Intermediate Reference
Lucknow, UP Laboratory (IRL) and treatment
and care
7 Lala Ram Sarup (LRS) Institute of Tuberculosis and National Reference Laboratory
Respiratory Diseases, Delhi (IRL) and treatment and care
8 Lok Nayak Hospital, Delhi Xpert MTB/RIF available,
Treatment and care
9 Murshidabad District TB Hospital, Murshidabad, Treatment and care (new PMDT
West Bengal site)
10 National JALMA Institute for Leprosy and Other National Reference Laboratory
Mycobacterial Diseases, Agra, UP (IRL) and treatment and care
11 New Delhi TB Centre, Delhi Intermediate Reference
Laboratory (IRL) and DOTS
12 Rajan Babu Institute of Pulmonary Medicine and TB Treatment and care
(RBIPMT), Delhi
13 St Stephen’s Hospital’s Home-based care of MDR- Counselling and home-based care
TB patients, Delhi services to patients enrolled in
PMDT sites in Lok Nayak Hospital
and RBIPMT Delhi
14 Vallabhbhai Patel Chest Institute, Delhi New upcoming PMDT site
WAY FORWARD
We aim to disseminate these 5-part series of advocacy documents in a media workshop
in Delhi in June 2013, send them to the key people at all the sites we covered across the
country and last but not the least to Central TB Division requesting them to consider
incorporating the recommendations on infection control, counselling, diagnostics and
laboratory services and treatment and care services in PMDT in India. Some of the
recommendations are also for strengthening or establishing linkages with other
programmes or departments of the government and we will aim to deliver these to
appropriate agencies. We also aim to exhibit the photo essay at different opportunities
and also share it with the sites for non-commercial use such as patient or community
education. We believe that these 5-part series of advocacy documents and photo essay
might also be of use to new and upcoming PMDT sites, private centres or other
supporting initiatives by NGOs and PPP approaches. We will make these materials available
for them as well.

7
8
Infection control

9
All India Institute of Medical Sciences (AIIMS), Delhi
The PMDT site of AIIMS was located away from other departments and buildings in the
campus towards one end. The Out-
Patients’ Department (OPD) area was
very well ventilated, with high roofs,
diffused sunlight and well-spaced
seating arrangement for patients and
attendants. There were lot of TB-
related information, education and
communication (IEC) material in
Hindi and English displayed in the
OPD area using powerful illustrations
and simple texts to highlight the
importance of basic principles of
DOTS – including importance of
infection control, early diagnosis,
treatment adherence, among others.
Sputum collection area was also away from the main thoroughfares, and person giving
sputum was supposed to give sputum
sample in an open, empty, segregated
and cross-ventilated side corridor.
We found resident and senior doctors at

AIIMS Chest Clinic OPD and laboratory
areas were wearing N95 masks. The
healthcare workers were wearing
surgical masks. Doctors and other
healthcare providers were also
encouraging patients to wear masks at
every opportunity such as at drug
dispensing sites, OPDs, and other
patient contact points.

10
DR KAMAL VERMA, Department of Medicine, AIIMS, who was
attending to patients at DOTS Referral Centre when we met him,
said “All of us doctors dealing with TB patients have to wear N95
masks.”
DR SK SHARMA, Professor and Head of the department of Medicine,

AIIMS, stressed that “Basic sanitation and hygiene methods like
cough and spitting etiquettes, not urinating in public, among
others, must be taught in school not only with the perspective of
TB but for broader benefits of practicing basic infection control in
our daily lives. I would like to say that merely making rules will not
help unless we implement them also.” Dr SK Sharma,
HOD Medicine, AIIMS
Resident and senior doctors at AIIMS Chest Clinic OPD and
laboratory areas were wearing N95 masks. Doctors and
other healthcare providers were also encouraging patients
to wear masks at every opportunity such as at drug
dispensing sites, OPDs, and other patient contact points.

11
Civil Hospital, BJ Medical College, Ahmedabad, Gujarat
We found that the indoor ward for patients of drug-resistant TB was very well cross-
ventilated, with well-spaced beds, enough natural sunlight, and clean floors. This
ward was away from other areas of the building and wash rooms were separated by a
corridor.
DR AMAR SHAH, WHO consultant for RNTCP for the state of Gujarat
(at BJMC, Ahmedabad) said: “For infection control we follow
certain measures at all our drug-resistant TB sites. There is
maximum ventilation in the wards. We make sure to have area
equivalent to at least 20% of the floor area, to have open air space
and cross-ventilation. Our healthcare staff monitors proper and
regular air exchange. Each patient is provided with sputum cups
and surgical masks.”
DR RM LEUVA, District TB Officer (DTO), Ahmedabad Municipal

Corporation district, lamented that “Spitting is a very common but
bad habit in us Indians. When we go abroad then we do not spit,
because of the fine which we have to pay. But once back in India we
start spitting again. This must stop.”

12
DR PURVI from the Ahmedabad PMDT site said that, “We counsel all our patients and
also tell them about infection control methods to be practiced at home. We give them
a spittoon to spit into. We also ask them to wet mop the floors with 5% phenol, as we
do here in the wards, or kerosene mixed water. We ask them to cover their spit with
mud.”
A patient re-admitted in the MDR-TB ward due to some breathing problem said that
she follows all the infection control methods explained by the doctors/nurses to be
practiced at home.
There is maximum ventilation in the wards. We make

sure to have area equivalent to at least 20% of the floor
area, to have open air space and cross-ventilation. Our
healthcare staff monitors proper and regular air
exchange. Each patient is provided with sputum cups
and surgical masks
King George’s Medical University (KGMU), Lucknow

DR SURYA KANT, Professor and Head, Department of Pulmonary Medicine said that
Patients should follow the practice for proper sputum disposal and for covering of
mouth during coughing and speaking.
KS Roy Hospital, Kolkata

The OPD area was very well cross-
ventilated. The wards were very airy,
cross-ventilated and sunlit. The iron
beds were at distance of 6 feet from
each other, and the doors and windows
occupied more than 20% of the total
floor area of the wards. There were
separate wards (and building) for male
and female drug resistant TB patients
and a separate waiting room in a
building across the wards for patients’
attendants.
DR VR PRADHAN, Superintendent, KS
Roy Hospital, told us that, “Infection control is a very important part of controlling
the spread of the disease and we strictly follow all the air borne infection control

13
methods. Broadly speaking they are
about cough etiquette, sputum disposal
system, sputum disinfection system,
biomedical waste management,
counselling on not spitting etc, and
they must be followed everywhere-- in
and outside the wards; in the OPD; in
the laboratories, in communities
among other places. Sputum disposal is
in lid-covered sputum cups and these
cups are kept overnight in 5% phenol
solution before being washed and
ready for use again. Wet mopping of
floor with phenyl disinfectant is done.
The ward master is in charge of
cleaning the wards. Biomedical waste
disposal is in place. As per RNTCP
guidelines washing soap should have
70% alcohol. But as this is not
available, we use carbolic soap
instead. We also take adequate steps
for prevention of infection among
healthcare providers. They are told to
keep their faces away from the
patients, use surgical masks, do proper
hand washing and use swabs. They are
actually trained and they teach
themselves how to take care of the
infection from the patients. We
continuously counsel our staff on
infection control methods.”
MS BANSRI MONDAL, Nursing

Superintendent said that, “When the
patients are admitted here for
treatment initiation, we instruct them
about infection control methods which
they have to follow at home, but we do
not know if they are actually following
them. So the community healthcare-
giver must actually do regular home
visits to check among other things that
infection control measures are in
place. We have to use other means
also to further stress upon good
practices of infection control through

14
advertisements and health education.”
Lok Nayak
Hospital, Delhi
When we went to the
Hospital in February 2013,
the indoor wards had been
temporarily closed for
renovation work. So patients
who needed to be admitted
were being accommodated
in Rajan Babu Institute of
Pulmonary Medicine and
Tuberculosis. We found that
the OPD was located in a
very big hall with separate
large and open cubicles for

15
doctors, equipped with
exhaust fans and proper
ventilation. We reached
there at 9 am and the work
was already in full swing.
The place was spick and
span and all the outdoor
sputum positive patients
who had come to take their
medicines or show
themselves to a doctor were
wearing masks.
The patients I spoke to said

that they had been given
clear instructions by the
doctors on infection control
methods to be practiced at
home, like using a separate
room and toilet and wearing
a mask.
LRS Institute of TB and Respiratory Diseases, Delhi

This Institute is the only one
in the entire country to
have model wards for drug
resistant TB patients. They
consist of 24 cubicles,
completely isolated from
each other, which can house
24 patients—one in each
cubicle—who can be
monitored 24 hours a day
through a screen monitor
placed in the nursing station
outside the ward. They have
state of art infection control
devices in place like
negative pressure and air
filters. Whatever the
patient coughs never comes
out of the ward, but always
goes up where it is filtered
out by the air filters.

16
DR NEETA SINGLA, PMDT Nodal Officer at LRS, informed that, “These special wards
were made to see the feasibility of these model wards in India but we found that
these model wards are not feasible in India (which has a huge patient load of drug-
resistant TB), because of the high costs involved in their construction and daily
maintenance. But since we have made them we are maintaining them as free wards.”
When I sought permission to interview some patient in the model ward, I had to wear
an N95 mask before entering the negative pressure special wards.
The hospital also has the normal 40 bedded ward for patients of drug
resistant TB where all infection control measures were found to be in
place—sunlit ward, well- spaced beds, proper cross ventilation, exhaust
fans, sputum disposal cups with each patient, among others. All the
patients were wearing masks.
Rajan Babu Institute of Pulmonary Medicine and

Tuberculosis (RBIPMT), Delhi
We were really impressed by the
vast area of the institute. DR
ANUJ BHATNAGAR, PMDT Nodal
Officer at RBIPMT, told us that
this place is spread over an area
of 70 acres and was used as a TB
hospital since 1935, due to its
location which was outside the
city in those days. We found that
except for one new building which
was multi-storied, the rest were
all single-storied and designed in
a manner to offer natural

17
ventilation in and outside the wards. Dr Bhatnagar informed that when the guidelines
for airborne infection control were being formulated by RNTCP they visited this place.
They found that whereas recommended air exchange is 12 per hour, here in the wards
it was 29, just because of natural ventilation. We saw that there were separate wards
for male and female drug resistant patients. At the time of our visit in an afternoon of
February 2013, 50 out of the 53 beds in the male ward were occupied—17 by XDR-TB
patients. The wards, equipped with ceiling fans, were well cross-ventilated with a lot
of sunshine streaming in the ward. The wide corridors were fitted with a wire mesh.
All the patients were wearing masks and their beds were well spaced from each
other. Some of the indoor and outdoor patients, who we spoke to, said that they had
been instructed about proper disposal of their sputum at home to avoid infection. In
the hospital we found adequate waste disposal system with different coloured bins for
different types of waste material as per PMDT guidelines.
The sputum sample collection room was away from the OPD and wards but located in
a naturally ventilated open area. A chart giving clear instructions on AFB Smear
Staining was pinned on the wall of the room.
Recommended air exchange is 12 per hour, here in the

wards it was 29, just because of natural ventilation…

18
19
20
 Quality counselling of those people with presumptive drug-resistant TB and
their family members by healthcare providers and cured patients on infection
control (in home, community and healthcare settings) among other aspects of
PMDT will go a long way in ensuring success and positive outcome of PMDT in
India.
 Infection control counselling and literacy of healthcare staff at all PMDT sites
will also help improve PMDT outcomes.
 Uninterrupted supplies of N95 and/or surgical masks, sputum cups with lids,
disinfectants, among others, are also important for PMDT success.
 Hands-on training of patients (and their family members or care providers) in
sputum disposal, cleaning of sputum cups, proper wet mopping of floors with
5% phenol or kerosene mixed water, hand washing, wearing proper masks,
washing of masks, among other measures, should be provided in a patient-
friendly manner.
 There should be adequate facilities for hand washing and good maintenance
and cleaning in the wards with uninterrupted supplies (such as soap, etc).
 Adequate ventilation (natural and/or assisted) at all times is important.
Exhaust fans should be functional where natural ventilation is an issue.
 The PMDT guideline of adequate space between 2 adjacent beds, at least 6
feet, should be strictly adhered to.
 Cough hygiene should be promoted through signage and practice ensured
through patients and staff training. Reinforcement of cough hygiene should be
done at every opportunity of patient contact.
 Cough hygiene should be integrated in general health education and awareness
missions for overarching public health benefits.
 Spitting should be strictly discouraged in all healthcare settings, and
communities.
 Awareness and practice of infection control measures in home-settings was
inadequate – perhaps that is why in many cases we found more than one family
member was infected with drug-resistant TB. Mechanisms to monitor and help
strengthen infection control in community and home settings will help
pronounce the gains of PMDT.
 Patients, especially women who often spend most of their time indoors, should
be encouraged to expose themselves more to sunshine and fresh air.
 Special infection control education to protect transmission of all forms of TB
(and other infections) to children should be provided to patients and all family
members. Similar messaging should also be incorporated in other health
education campaigns for broader gains. For example, patients should be
discouraged on bringing children to hospitals or drug dispensing sites, and
family members should be educated and sensitized to support such infection
control measures.
 Attendants of indoor patients in PMDT wards should be educated on infection
control measures and related practices.

21
“Infection prevention and control measures aim
to ensure the protection of those who might be
vulnerable to acquiring an infection both in the
general community and while receiving care due to
health problems, in a range of settings. The basic
principle of infection prevention and control is
hygiene.” Source: World Health Organization (WHO)

22
23
Dr Shalini (in the MDR-TB Ward): Very good
“Very good communication between patient and communication between
referral centre, referral centre to diagnostic
centre and diagnostic centre to the chest clinic patient and referral
is extremely important. It is important to have centre, referral centre
contact numbers of TB patients’ to track them,
especially in case of migrant population, as they to diagnostic centre and
form major category of people who opt out of diagnostic centre to the
treatment. The health workers must also be
more proactive and visit and follow up the chest clinic is extremely
patients properly. Education also plays an important
important role. Kerala with highest literacy rate
has least number of MDR-TB patients.”

Dr Amar Shah, Consultant for RNTCP for the state of Gujarat:
“From the patients’ perspective, we need counsellors in management of MDR-TB not
only at the state but also at peripheral level to
ensure adherence; otherwise after 6 months
once the patients start feeling better there is
likelihood of their not adhering to treatment.
Family involvement is important. So this positive
energy is needed by the patients.
We need trained counsellors at macro and micro

levels. We need one counsellor at the DR-TB
centres, where the patient gets admitted, to
counsel not only the patient but also his or her
family members and other care providers,
especially for drug side-effects and to look for behavioural changes like depression
and suicidal tendencies. We need counsellors at district and peripheral levels also. So
expert and continuous counselling is needed at all 3 levels.
The RNTCP sanctioned the posts of counsellors in 2011. So now we have stopped
taking the help of NGOs in the area of counselling as it a part of the programme. Now
we have diverted their help to other areas like helping with TB programme among
prisoners. We have also started a programme where the counsellors are appointed for
TB patients in the prisons.

24
Eli Lilly was supporting in
Eli Lilly was earlier supporting us in 7 districts. proper follow-ups of
They were having counsellors at district level who patients. Now we do not
would visit each diagnosed patient and have a
profile for each patient on the basis of which we need counsellors from Eli
provided support to needy patients. Eli Lilly was Lilly but they still help in
supporting in proper follow-ups of patients. Now pulmonary (through lung
we do not need counsellors from Eli Lilly but they
still help in pulmonary (through lung exercises for exercises for example)
example) and occupational rehabilitation. They and occupational
help in providing sewing machines for the female rehabilitation. They help
patients and other things like cycles to help
them.” in providing sewing
machines for the female
patients and other things
Dr Leuva, DTO Ahmedabad Municipal Corporation
(AMC): like cycles to help them
“Initial counselling is most important. We must counsel the presumptive MDR-TB

patients beforehand. They must be told that the treatment is of long duration and
may involve complications and hence hospital admittance. We must also
communicate with the family members. There should be prompt follow ups. For
example, as I came to know that a patient of mine met with a fracture then I made a
follow up within next 24 hours. I assured him that he will get the medicine and
injections at home for it. So, social communication is very important and there must
be a good doctor- patient relationship. I always make sure that the patient gets
proper follow ups, even when I am not available. I always make sure that there is
some other person available for follow-ups in my absence.
Face to face communication always proves to be successful. I even call the patients to
meet me, wherever mutually convenient (and not necessarily in a clinic setting), to
counsel them in case they do not want me to come to their house. My staff also
coordinates accordingly and counsels patients outside their homes if necessary.
I would like to recall one incident. I still remember my first patient of MDR-TB: Leela
Ben. She was a vegetable vendor. A private doctor had his clinic nearby and he really
helped and counselled her. The doctor went to his clinic every day, even on holidays,
to give the medicine to her. He was from private setup but he ensured patients
adhered to complete treatment and coordinated very well with us. I feel very
satisfied even if I am able to save one patient. All my past
patients still are in contact with me and we share a very good
relationship.”

25
We counsel the patient to
Dr Pranav Patel, microbiologist in charge of ensure that we get good
IRL at BJMC: quality sputum sample for
“We counsel the patient to ensure that we test. We request the
get good quality sputum sample for test. We
request the patient to give sputum sample patient to give sputum
avoiding blood as it hampers the overall sample avoiding blood as it
result. If the sputum is good then we can
obtain the result just in 3 days, otherwise hampers the overall result.
the sample with blood would have to go If the sputum is good then
through the process of culture and it would
take a much longer time. We sensitize the we can obtain the result
healthcare providers to collect the best just in 3 days, otherwise
sputum sample avoiding even a single food
particle in it. The correct method for the the sample with blood
patient to give sputum sample is after doing would have to go through
gargling. Between 2009 and 2012 out of a
total 35,000 samples, we got only 76 samples the process of culture and
with blood. By improving quality of samples it would take a much
we have got 97% correct results.”
longer time. We sensitize
Dr Chhaya: the healthcare providers to
“Patients are already fed up of taking drugs
by the time they are diagnosed with MDR-TB. collect the best sputum
When they are told that they have to be on sample avoiding even a
treatment for another 24-27 months, they
are really dejected. So in case of MDR-TB single food particle in it.
patients counselling should begin right from
day zero when the sputum is sent for culture
sensitivity. We tell all the facts very clearly to
the patients: if you have MDR-TB then you will
need treatment for 24-27 months; you will
have to take daily injections also, except on
Sundays, for at least 6 months and after that
you will take only oral drugs; in between you
will be giving sputum for culture examination;
if you take your drugs regularly you will be
cured—there is no doubt about it. When MDR-
TB patients are admitted in the ward they
have to be counselled again. Then when they
go back to their home, the DOTS provider, along with Medical Officer (MO) and DTO
should counsel them regularly. If this is done properly there will be no treatment
adherence problem.
We also give the phone numbers of all our healthcare providers to the patients. We
tell them that they are free to call anyone of us at any odd time and we will be there

26
to solve their problem. And they do Patients are already fed up of
call and we do attend to them. We taking drugs by the time they
counsel them repeatedly. We have
developed counselling tools even in are diagnosed with MDR-TB.
local language for the patients, for When they are told that they
the DOTS providers and for the
supervisors. Doctors are the best have to be on treatment for
counsellors. At the time of treatment another 24-27 months, they are
initiation we make patients aware of
the probable side-effects of medicines really dejected. So in case of
in a gentle way: if you have yellow MDR-TB patients counselling
urine, or giddiness or any other
problem, then please let us know on should begin right from day
phone. We do not tell anything bluntly zero when the sputum is sent
as that is going to affect there
adherence to treatment. We train our for culture sensitivity
DOTS providers to observe the patient
for any side-effects like jaundice and
behavioural changes.
Cyclocerine is the worst drug in terms of side-effects which gives rise to psychological
problems like suicidal tendency and acute depression. We have patients who have
tried to commit suicide. Other side effects like joint pain, nausea etc are minor ones.
With the help of Eli Lilly we have tried to rehabilitate patients by giving them cycles,
sewing machines, lorries to sell vegetables, etc.”
Calcutta Rescue Centre, Kolkata

Dr Aloknanda Ghosh, Deputy Chief Executive Officer, Health and Operations:
“Counselling and awareness is very important. We do have counsellors—we have our
health education consultant over here and we also have health educators in the
Calcutta Rescue staff who give health education at the beginning of treatment and
when the patients come to take medicines. So at every opportunity patients get the
health education.”
Ms Bobita Chakarbarty, Nursing Supervisor:

“When patients hear for the first time that they have MDR-TB they get a shock. That
is the time I counsel them and talk to their family. Talking to the family of the
patient is very important to make them understand about TB. They must be given
health education about MDR-TB in the interest of the patient completing treatment.
So I counsel both—the patient as well as the family. Many of our TB patients are also
HIV positive and some have diabetes. So many of the patients have to take medicines
for more than one disease and they feel they have to take too many medicines. My
biggest problem is patients with alcoholism. They are the ones who are at a much

27
higher risk of not adhering to
treatment. With other patients we do
not have much problem about
treatment adherence.
One of my patients is a young girl who

is now in the continuation phase (CP)
of treatment and comes here every
day to take her medicines. Sometime
ago she developed some psychological
problems: sitting all day at home with
nobody talking to her. So I advised her
family to send her to school again. But
she is very shy and thought that she is
overage for her class. I told her that Group counselling session facilitated by Bobita Chakarbarty
age is never a bar for studies. I even
counselled her family for it and now she is very happy going to school again and
talking to her friends. She started going in January 2013 only when she was infection
free. From the school she comes here to take medicine. Earlier she would cry all the
time but now she is back to normal and very happy.”
A female patient: Even in school I keep a

“The Doctor has counselled me on handkerchief on my mouth
some preventive measures and for while talking or sneezing and
this I have my separate bed at home,
I have separate utensils to eat my I want to tell all other people
food and a separate water bottle. I that we must take proper
do not eat with my siblings. Even in
school I keep a handkerchief on my medicines and on time and
mouth while talking or sneezing and also that we should never
I want to tell all other people that
we must take proper medicines and miss even a single dose.
on time and also that we should Bobita didi helped me a lot
never miss even a single dose.
Bobita didi helped me a lot by just by just talking and listening
talking and listening to me. She to me. She convinced me to
forced and convinced me to join
school again which has made me join school again which has
very happy.”
made me very happy
Another female patient:
“I have been counselled by the doctor to put on the mask whenever I open my mouth
to speak or else cover my mouth with a handkerchief when I go out for better
infection control or as a preventive measure. I have been coming every day to

28
Calcutta Rescue Centre since past 9 months to take my medicines. This centre is very
good and the staff is very understanding and caring.”

Dr Surya Kant, Professor and Head, Department of There is enough
Pulmonary Medicine:
“I believe religious and faith-based leaders have an evidence linking
important role to play as counsellors. They need to be tobacco smoking
educated and told that they need to create awareness in
the society. They should be asked to tell people that TB is
with TB, so
curable and it can be cured by regular and proper incorporating
treatment.
tobacco cessation
Irregular and inadequate treatment is another major and education
challenge. Once the patient becomes symptom-free
within 4-6 weeks he/she tends to stop the treatment. So, services to
doctor-patient communication is needed. Counsellors strengthen
should be appointed at the tuberculosis centres and they
should regularly counsel patients for treatment
counselling will have
adherence. Doctors can only prescribe drugs and it is not far reaching results
possible for them to monitor patients daily. So, a special
force of volunteers and health workers need to be created on public health
to do this important task.
We need to raise awareness about overarching benefits of daily adequate sunlight

exposure which should also be a part of TB control policy. Also balanced diet is very
important to support patients who are on treatment. There is enough evidence linking
tobacco smoking with TB, so incorporating tobacco cessation and education services
to strengthen counselling will have far reaching results on public health. We run a
tobacco cessation clinic at our site. Counselling must address issues related to
tobacco and other forms of addictions including alcohol.”
KS Roy Hospital, Kolkata

Dr VR Pradhan, Superintendent:
“Counselling is very important because patients have a tendency to defer and leave
treatment midway mostly because of the toxic side-effects of the drugs. Counselling
should start from the time the sputum sample is sent for testing. It should not be left
for later after diagnosis has been made. Once patient is diagnosed with MDR-TB then
next stage of counselling should be done at district level. There should be counselling
before diagnosis and after diagnosis; before treatment initiation and after initiation;
and in the continuation of treatment for two years. We need this counselling, which
we have arranged for in this centre. Close contact with the patients is important so
that they do not leave us midway without completing treatment. When the patients

29
come at PMDT site counselling
should be given to both- the
attendants as well as the
patients. Counselling should
be face to face and group
counselling is better. If there
is any complication, like drug
toxicity or disease
complication, that should be
taken care of very quickly.
There is one TB-HIV counsellor

posted in the district. There is
need for counsellors much more There is need for counsellors much more
in the districts, because in the districts, because patients stay
patients stay there and are on
drugs for two years. Counselling there and are on drugs for two years.
should also be like a training for Counselling should also be like a training
the patients-- how to stay in
the ward; how to stay in their for the patients-- how to stay in the
house; how to spit; how to ward; how to stay in their house; how to
dispose the sputum—all this
should be part of counselling spit; how to dispose the sputum
too. In the patient’s house
there may be no ventilation like we have here in the hospital—there may be just one
door and no windows.
So counselling is important for two reasons- for adherence to treatment and for air
borne infection control.”
Bansri Mondal, Nursing Superintendent:

“Counselling is the first and foremost
thing for MDR-TB patients because it is
mostly the basic DOTS patients who get
MDR-TB. So actually the DOTS patients
should have regular counselling along
with regular medicine supply. If this is the
regular practice then we are less likely to
have a patient become drug-resistant. So
we have to take care of counselling even
at basic DOTS stage so that patients get
cured of drug susceptible TB successfully.
A lot of stigma is still there, especially in

case of female patients. Stigma is created

30
by society and families. Just 15
days back we had a patient from A lot of stigma is still there,
Midnapore district in West Bengal
who told that her husband had especially in case of female
left her because she had MDR-TB. patients. Stigma is created by
Our role to address this stigma is
limited inside the hospital. I society and families. Just 15
think much more needs to be days back we had a patient
done at the grassroots level with
the help of social workers, NGOs, from Midnapore district in
counsellors and the politicians. West Bengal who told that her
The poor patients are very busy
to earn their bread and butter. husband had left her because
So when they start the medicine she had MDR-TB. Our role to
in the initial phase and start
feeling better they stop taking address this stigma is limited
medicines and go to their work inside the hospital. I think
not realizing that it is for their
own betterment that they should much more needs to be done
continue treatment. So there is
need for continuous counselling
and supporting the family - if the only earning member is suffering from TB, he or she
is not able to work and the family suffers. It may just not be enough to counsel them
to take medicines regularly. There should be some way of providing them with food
and shelter also. It is my personal view that if their socioeconomic condition is not
improved, if they cannot meet their basic needs then you cannot expect them to
complete the treatment. We can set up RNTCP programmes but unless we ensure they
address problems faced by patients, outcomes will be limited. We must make patients
feel good and confident by counselling them properly.”
MDR-TB Patient:
“I am very happy here. The sisters (nurses) are doing much more than my family could
ever have done. All the responsibilities which should have been taken by my family
members are being taken by the sisters (nurses), caregivers and doctors of this
hospital. I am very grateful to all the hospital staff. We should believe the nurses and
doctors, and other healthcare givers, listen to them and follow what they tell about
what to do and what not to do and adhere to the treatment schedule. This is going to
benefit us after all.
Another MDR-TB Patient:

“I am very happy with the kind and loving attitude of the nursing staff here. They are
all very affectionate. I feel fitter here than at home. The sisters (nurses) are very
good. They always ask about my wellbeing. Please pray for my recovery.”

31
Ms Sayantani Bose, Social Counsellor, CARE India
(She is supported by Eli Lilly through CARE India and counsels
PMDT patients at KS Roy Hospital, Kolkata)
“We cannot help the patient with any physical problems (arising
out of medication) as these problems are dealt by the doctors
and the nurses. But the counsellor can play a major role when
the patient undergoes mental problems and needs some social
support. The patients start from CAT-1 and then goes to CAT-2
and then to CAT-4. So, it is a long period that they have to
undergo treatment for MDR-TB. We come across many cases of
frustration because every time the patients are told that they
will get cured soon. Even in CAT-1 they are assured of the fact
that they will be cured. The same thing is conveyed in CAT-2
also although it may not happen and then it may lead to MDR-TB
and so, frustration occurs. So, we help these patients in such
cases. We give mental strength to the patient which is very important. There are
stigmas associated with the disease and we help patients to overcome them.
COUNSELLING OF FAMILY MEMBERS

Counselling of family members is one of the important tasks. We can counsel the
patient but patient may not always be in that state of mind. So, at first point of
contact we try to counsel the family members also. We tell
them the kind of support that should be provided to the We come across
patient. Family members also undergo the phase of many cases of
frustration due to their relative undergoing years of frustration because
treatment. Counselling is also important because some of the
patients might go to the private sector leaving the RNTCP. every time the
They are frustrated with the fact that they are not getting patients are told
relieved in the government sector. So in order to reassure that they will get
them of the government facilities and their fruitful results,
counselling plays a major role. cured soon. Even in
CAT 1 they are
NUTRITION assured of the fact
Regarding nutrition and counselling I, advice the patient to be
on a proper balanced diet. In nutritional counselling it is that they will be
important to remember the diabetes and tuberculosis cured. The same
association-- like a patient living with diabetes should not thing is conveyed in
take too much quantity of food at one time. They should eat
smaller amounts at regular and frequent intervals. I have CAT 2 also although
learnt this thing from the doctors who are staying in the it may not happen
hospital. I also learnt from them on how to give nutritional and then it may lead
tips to the patient and now I give them. There are some
myths associated with nutrition. People think that they to MDR TB and so,
should not take food which is sour in taste. They also think frustration occurs.
that costly food like meat fish and eggs are more nutritious.

32
I tell them the
But all this is not correct. I tell them that a balanced diet interval of the
consisting of pulses, rice and vegetables is the perfect culture- the time
diet. I advise my patients from staying away from cold and
stale food. I also advise them to drink 6-7 glasses of water
period in which the
a day. The point in treatment literacy that I would like to culture needs to be
mention is about treatment duration and also I tell them sent for the further
the interval of the culture- the time period in which the
culture needs to be sent for the further processing. I also
processing. I also tell
tell that it is also the responsibility of the patient to that it is also the
ensure the sputum is sent for culture in time, otherwise it responsibility of the
would unnecessarily make treatment longer-- Instead of
six months it might lead to a period of 9 months of
patient to ensure the
injections. Although, the centre contacts the patient but sputum is sent for
it is also the responsibility of the patient to get back to culture in time,
their respective centre and get their sputum culture done
at the right time. I also tell them that duration of
otherwise it would
treatment is longer for MDR-TB than their earlier TB but unnecessarily make
they will have to complete it. treatment longer--
I advise the patients to complete the process of eating
Instead of six months
medicines within 30 to 40 minutes and take a gap of five it might lead to a
minutes between two pills in order to avoid the problem period of 9 months of
of vomiting. I also advise them to take medicines on an
empty stomach. The injection should be completed
injections. Although,
within one hour of taking the medicine. the centre contacts
the patient but it is
INFECTION CONTROL COUNSELLING
I advise the patients to always wear masks in the initial
also the responsibility
period of six months. They should keep 2 masks in use of the patient to get
regularly. One can be washed and dried in sunlight while back to their
the other is in use and this process should be continued till
six months. When the culture becomes negative then the
respective centre and
patient does not need to wear the mask all the time -- get their sputum
just needs to wear it during sneezing and coughing and culture done at the
then it is up to the patient to use the mask later on. But in
the initial 6 months it is really important. The other right time.
important point is that the patient must stay away from
children. Proper disposal of sputum is important. The sputum should be kept in a
container with phenol. I would also like to mention that some people wrongly believe
that one can get TB through use of utensils/ clothes of the patient, but TB is an air
borne infection. The most important thing is keeping doors and windows open for
cross ventilation.
WOMEN AND TB
It is generally seen that if a woman is having TB then she is being looked after by her
parents, brother, sister or anyone but not in-laws or husband. I would also like to

33
a woman requested me to
keep her admitted in the
mention a unique case wherein a woman requested hospital so that she could
me to keep her admitted in the hospital so that she escape from the hard
could escape from the hard work imposed by her in-
laws. The lady said to me ‘Didi please get me work imposed by her in-
admitted and keep me in the hospital otherwise my laws. The lady said to me
mother-in-law will make me do hard work.’ I spoke ‘Didi please get me
to her husband and mother-in-law and after the
things got well and she came up with a negative admitted and keep me in
strain, the mother-in-law was convinced and she the hospital otherwise my
took her daughter-in-law back home. But then I mother-in-law will make
came across a counsellor who told me that another
lady was struggling with the same problem of family me do hard work.’ I spoke
issues and was prevented by her mother-in-law from to her husband and
even touching her 3 years old son because of her mother-in-law and after
TB. This counsellor wanted to talk to the mother-
in-law for counselling her but mother-in-law the things got well and
refused. she came up with a
negative strain, the
CURED PATIENTS
I also bring cured patients in the counselling mother-in-law was
sessions. We organize a patient provider meeting in convinced and she took
the TU (tuberculosis unit) where patients are free her daughter-in-law back
to share their problems with the medical officer and
the medical officer addresses those problems. I home. But then I came
deliberately include one or two cured TB patients in across a counsellor who
these meetings who share their experiences of told me that another lady
various stages of TB treatment they have
undergone. They also talk about the difficulties was struggling with the
faced and the way they had overcome them. This same problem of family
inspires and motivates other patients to complete issues and was prevented
treatment. It is not only the cured TB patients that I
bring in counselling session for motivating others by her mother-in-law from
but I also bring those who have left treatment in even touching her 3 years
between, or have interrupted their treatment, to old son because of her TB
share their views and many of them are now back
into the treatment and are feeling much better.
COUNSELLING AT DIFFERENT LEVELS

I am counselling at the KS Roy TB hospital. I counsel the patients from the time they
get admitted for treatment initiation at the DR-TB site. I also counsel the patients
when they get discharged and then I also continue with the follow up process either
through the STO, PMDT, or may be in some cases, directly. Many patients give their
mobile number, so I contact them over phone. In many cases the patients tell that
they do not want to take the medicines and they feel better by not taking medicines.
In that case I visit the patients’ house and counsel them directly. I am supported by
Lilly MDR TB Partnership through CARE India which has partnered with the RNTCP.

34
Usually there is a single
SELF-MOTIVATION
In order to boost morale I tell patients that it is a
counsellor for so many
long duration treatment and I agree with them patients and the number
that it is painful to take these medicines. I talk to is increasing day by day. It
them and show empathy. I think that helps the
patients. The RNTCP is providing only the drugs. I
is very difficult for one
think if the assurance and mental support is single counsellor to
helpful then I must do that and I have also seen address problem of all
patients following our suggestions as they now
have faith in me. So, it also inspires me.
patients so it is very
Regarding my family initially I did face some important that counselling
problem from my husband’s side. He questioned should not be seen
me that why do I work only for TB and that too
for MDR-TB. When I consulted the doctors they
separate and it should be
told me that the TB germs are present integrated at all levels
everywhere and we need not worry. This
information which I got from knowledgeable persons was enough to convince my
husband and now I do not have any problem.
WAY FORWARD
Usually there is a single counsellor for so many patients and the number is increasing
day by day. It is very difficult for one single counsellor to address problem of all
patients so it is very important that counselling should not be seen separate and it
should be integrated at all levels. We may start with the staff of the hospital as they
may also have misconceptions.”
Dr Bandita SenGupta, Project Manager, CARE India

“DOTS provider is the first point of contact with the MDR-TB patient and will be
staying with him for 2 years to complete the treatment so he or she can be the best
counsellor. Generally in RNTCP, when a patient is diagnosed with MDR-TB they call
the DOTS provider and just teach the provider how to help with the treatment card.
Nothing else is conveyed to them. So we identify 10-15 DOTS providers and organize
quality training sessions for them. We have
not seen any such module on the website of
RNTCP. In West Bengal we have developed a
booklet in Bengali language as a guide for
DOTS Plus providers. It mainly focuses on the
points on how to be a good counsellor, apart
from giving basic information on MDR-TB. We
use these booklets during training sessions
too. RNTCP is also using the same booklet.
Earlier when MDR-TB patients were admitted
in the hospital for at least 1 month for
treatment initiation, life would become very
monotonous for them away from home. So
we used to provide them with some

35
Right now we have 5
counsellors supported by Eli
Lilly. When the project was
recreational media such as games like carom-board,
ludo, chess, among others.
started, there were 2
counsellors including
Right now we have 5 counsellors supported by Eli Sayantani and another
Lilly. The program has evolved over two years and
many changes have been incorporated since the
person at the PMDT site in
time it was initiated. Initially there was concept of Jalpaigudi district. Later in
counsellors at PMDT sites but now the focus is also consultation with the
on the district level. The counsellors are taken for
this project. When the project was started, there
RNTCP, three more
were 2 counsellors including Sayantani and another counsellors were appointed
person at the PMDT site in Jalpaigudi district. Later who are based at the
in consultation with the RNTCP, three more
counsellors were appointed who are based at the
district level in Howrah,
district level in Howrah, Murshidabad and Murshidabad and
Bardhaman. So now the counselling services are also Bardhaman
decentralized.”

36
Lok Nayak Hospital, Delhi
Dr Ashwani Khanna, PMDT
Nodal Officer, Lok Nayak
Hospital:
“As a matter of fact I myself
counsel my patients. We have
3 medical officers here and I
prefer to counsel all the
patients personally and in case
the junior residents have
counselled them, we confirm
from the patients about what
they were told and then we
put a stamp on their
prescription and sign it just to
make sure that she/he was
counselled. I am very sure that
if we counsel them from the
very beginning then we do not
need a DOTS provider to
counsel them later. We must
tell them the facts that it is a
fully curable disease if they
take the medicines regularly
and complete the treatment.
We tell them that we are there
to help you and very often the
default rates go down because
of this. In my opinion
counselling is more effective if
started early at the
commencement of treatment.
If it is done later, the patient
may already be feeling better
and would not be that
receptive. So if you tell them
at the very beginning that they
will start feeling better after
one month but that treatment
would last for 24 months which will cure the disease completely and prevent
reoccurrence of disease, then response will be better. It is very important to counsel
the family members along with the patients.

37
Good counselling in the DOTS
programme itself is very
Good counselling in the DOTS important. Here we counsel each
programme itself is very important.
Here we counsel each and every and every patient put on DOTS to
patient put on DOTS to prevent them prevent them from leaving
from leaving treatment midway and
encourage them to take their drugs treatment midway and encourage
regularly. In case of MDR-TB patients them to take their drugs
we make it a point to treat them
properly and fully and also screen regularly. In case of MDR-TB
their contacts. We are doing this in patients we make it a point to
the programme but good advertising
and publicity is also needed. treat them properly and fully and
It always feels very good when your
also screen their contacts.
patient of MDR-TB gets cured after 2
years of treatment and comes with a smile on his face. It gives us happiness when we
tell them that you are alright and cured and then we get an immense sense of
satisfaction.”
LRS Institute of TB and Respiratory Diseases, Delhi

Dr Neeta Singla, Nodal Officer for managing MDR-TB:
“Counselling can take the patient through the entire treatment. There are some
NGOs who are helping in the programme in some parts of Delhi, and there the
treatment non-adherence rate is much less (7-10%) than what we have here (20%): the
main reason being that they have some NGOs doing the counselling, giving patients
emotional support and some physical support in the sense that they take patient to
the hospital if required and so these small steps help in a big way.
Constant counselling at every centre will help. We also have counselling tools for all
healthcare staff - the medical officer at the peripheral unit, district TB officer, the
medical officer of the MDR-TB centre or wherever the patient comes and seeks help.
We all are being given training to give counselling at whatever level we are, apart
from the counsellors hired specifically for that purpose.
The RNTCP is now planning to have counsellors to counsel all the MDR-TB patients.
Under the RNTCP within about a year’s time we will have counsellors who would help
patients because that is very important. We have learnt from different programmes,
like the AIDS programme, that the role of counsellors is very important.
Counselling can take the patient through the entire treatment.

There are some NGOs who are helping in the programme in
some parts of Delhi, and there the treatment non-adherence
rate is much less (7-10%) than what we have here (20%)

38
Almost 70% to 80% of the patients have some adverse drug reactions and so they need
some kind of emotional support. Community support is also important. TB is a disease
where you require support from all. When we go for home visits they ask us to call
them wherever we want but we should not come to their place as they do not want
anybody to know about it, due to stigma associated with the disease. But there are
also examples where community has been very supportive - like we get some patients
where the neighbour is running around with some papers that we need to help this
patient. But we also have examples where landlords have chucked their tenants out
once they came to know about them having MDR-TB.”
Murshidabad Medical College and Hospital, West Bengal

Dr Kajal Krishna Banik, Medical Superintendent:
“Human resource is a continuous demand of the programme. But at the same time I
am confident that it is not possible to provide one healthcare provider to each and
every individual patient. It is not possible in a resource constrained country like ours.
But if human resource is increased at all levels then definitely the services would be
easily rendered to all the patients who are in need of it.
New Delhi TB Centre

Dr Jayant Banavaliker, Chairman, New Delhi TB Centre & former Director, RBIPMT:
“I feel that if a patient is adequately counselled and if
the doctors talk to the patient, one will never have this
problem of non-adherence to treatment. Unfortunately,
we do not counsel the patient properly. So after taking
treatment for some time the patient starts feeling
better and thinks that there is no need of taking anti-TB
drugs anymore.
Patients need to be counselled on side-effects of anti-TB

medicines which is another reason for non-adherence.
I believe that the patient should be treated like a VIP. If

you give a patient hearing to the patient and then
counsel him it would result in better treatment
adherence.
I know that there is a big load on doctors but that does not mean that they should not
attend to the patient properly. It is necessary to attend to the patient and counsel
him well. Health education and treatment literacy is important not only for the
medical staff but also for the patients. Patients have an important role to play in
successful completion of treatment. Counselling is also important to keep the morale
of the patient high.”

39
Rajan Babu Institute of Pulmonary Medicine & TB, Delhi
Dr Saral, MDR-TB Ward:
“It is most important to ensure treatment
adherence. The duration of treatment is
very long and there are many medicines to
take with severe side-effects. If we are able
to convince the patients to take the
medicine then outcome is positive. Basically
we have to counsel the patient. We have to
ensure that they are taking the medicine.
We try to remove the complaints as much as
possible. Rate of non-adherence to
treatment is low here. They do have minor
complaints of side-effects but we keep on
counselling and motivating the patients and
address their issues as far as possible within
the programme. Nutrition has to be good
too. A proper normal diet is sufficient.
If the patients are poor, we support their

diet as long as they are admitted here. If
they eat what they usually used to eat then
also it is sufficient.”
Dr Ngilang, district TB officer and CMO in

charge of chest clinic:
“Counselling and continuous motivation of
MDR-TB patients is very important. We ensure that our DOTS providers are doing this
and we make them accountable for any patient who is not able to adhere to
treatment. In cases where the patient does not turn up any day we make sure that
the DOTS provider goes to his/her house the same day and the patient gets counselled
and brought back to the programme as far as possible. It is our objective and
responsibility to make sure that the patient completes the treatment from the first
drug to the last and does not develop resistance. So, constant motivation is
important.”
St Stephen’s Hospital Home-based care facility, Delhi

Dr Joyce Vagela, public health specialist, Community Health
Department:
“This centre is basically a community health department of St
Stephens’s hospital, Delhi. Home-based care model is for MDR-TB
patients. It is a home-based care model for counselling the MDR-

40
Home-based care model is
for MDR-TB patients. It
TB patients. It came up in collaboration with
Eli Lilly in August 2009. They get their came up in collaboration
treatment from some government PMDT site. with Eli Lilly in August 2009
Our role is to counsel them and help them in
completing their two years treatment. Most for counselling the MDR-TB
of them have already been on a long patients. They get their
duration of treatment (Cat-1 and Cat-2) and
are already dejected. Once they come to treatment from some
know of their MDR-TB status and that they government PMDT site. Our
have to be on treatment for another 24
months, it breaks them completely. So we role is to counsel them and
like to take patients early on just when they help them in completing
are about to begin treatment, as that is the
most crucial time. We are in contact with Dr their two years treatment.
Ashwani Khanna, the PMDT nodal officer at
Lok Nayak Hospital—and the list of patients comes from there. Then accordingly we
select the patients on the basis of our feasibility of visiting them—those who live
nearby and are connected to nearby DOTS centres. In the first phase of our project
we had two members in our team — one male and one female — who were trained as
per the 2005 module of DOTS Plus workers’ training. Sarthak helped in giving some
training on psychological issues as well. So they are fully equipped to understand and
empathize with the patients. The home care team is also fully trained as home
attendants. If the patient is admitted in RBIPMT, they take from there itself. In the
Intensive Phase the home visit is once every 15 days (12 visits in 6 months) and in
continuation phase it is once every 45 days (another 12 visits). So generally there are
24 visits per patient in the entire treatment phase. We have a 17 page questionnaire
(prepared with the help of experts) which is filled in the first visit after taking the
patient’s consent. Thereafter there is one page to be filled on every home visit.
The first visit is very long when all the family history of disease as well as other
information is sought. We tell them about the side-effects that can occur and also ask
in detail if they are facing any of them. We have found that over 40% patients have
joint pains, 20% have nausea and vomiting, 15% suffer from anxiety. Besides these,
there are numerous other side effects, including weakness. The patients have the
The first visit is very long when all the family history of
disease as well as other information is sought. We tell
them about the side-effects that can occur and also ask in
detail if they are facing any of them. We have found that
over 40% patients have joint pains, 20% have nausea and
vomiting, 15% suffer from anxiety. Besides these, there
are numerous other side effects, including weakness.

41
phone numbers of our team members and they can call them any time. If the patient
needs medical attendance, the team member informs me and I inform Dr Khanna (Lok
Nayak Hospital) and/or Dr Anuj Bhatnagar (RBIPMT) and the patient is sent there and
attended to, even out of turn. This works very well as the two doctors are very quick
to respond and help. We do nursing care of the patients at home also. In the first
phase of our project we had some funds to support their nutrition as proper nutrition
is a big problem especially in the IP phase, as there is not enough money in the house
for balanced diet. But now we do not have funds for that. But we do counsel them on
having cheap food options. Sometimes it requires a lot of persuasion for them to go to
the centre every day for their medicines. We take a real interest in their problems
and give them love and care. They also feel very encouraged. Some times their family
members are scared to take care of them for fear of contracting the disease. So we
counsel them as well. We tell them about infection control methods to be followed at
home to prevent spread of the disease—cover the mouths of patients, cough hygiene,
sputum disposal methods (burying it or heating it on fire and then disposing it). Taking
care of the adverse side effects of medicines plays a very big role in restoring
patients’ confidence and ensuring treatment adherence. In the 1st phase of our
project we took 101 patients of MDR-TB, out of which 69% are cured and another 2%
completed the treatment (they have yet to get their final report). So 71% in all
completed their treatment.
The second phase of our project Some times their family members are
started in September 2012 in
which we have nearly 200 scared to take care of them for fear of
patients, and as some of them contracting the disease. So we counsel
complete their treatment we will them as well. We tell them about
take more patients. We have a
very good coordination with the infection control methods to be followed
government. This is all due to our at home to prevent spread of the
very dedicated team members who disease—cover the mouths of patients,
make a very good rapport with the
patients. Seeing our work, Dr cough hygiene, sputum disposal methods
Ashwani has given us some special (burying it or heating it on fire and then
cases to handle (patients who have disposing it). Taking care of the adverse
left treatment midway repeatedly
or those patients who are side effects of medicines plays a very big
addicted). role in restoring patients’ confidence
and ensuring treatment adherence. In
There are over 50 children
between 11 to 20 years of age who the 1st phase of our project we took 101
have MDR-TB and have had to patients of MDR-TB, out of which 69% are
leave their studies in between. cured and another 2% completed the
They have to be counselled in a
special way to be able to resume treatment (they have yet to get their
their studies.” final report). So 71% in all completed
their treatment

42
Noor Mohammad, Project Team Leader of
Counselling Team: We also refer the
“Our motive is to help the patients continue and patients to the doctor
complete their MDR-TB treatment. I have seen that
once the IP phase is over, men tend to become more
immediately if they
careless about their treatment once they start going face major side-effects
out to work. Women, on the other hand, remain
careful throughout, perhaps because they have the
like ringing in the ears
fear of being thrown out of the family if not treated or breathing problem.
or because of their children. In that sense women
are more aware and conscious about treatment
If they have minor side
adherence. In IP phase both understand equally, but effects like joint pain
not later when they start feeling better. Women are
more stigmatised than men due to their TB. We
then we try to help
counsel the family members also. Very often it is them out by giving
the apathy of family and community that can kill the
patient, rather than the disease itself. Of course
them a massage
precautions have to be taken by all for infection
control—but they should not ostracize or discard or humiliate the patient. We tell
them about all this. As it is, an MDR-TB patient is forced to lead a very secluded life
apart from dealing with severe side effects. So, emotional support of family members
is vital.
I feel very good to counsel them. I really listen to these persons and it feels good as
there is no one to listen to them. So I feel that I must talk to them patiently because
there is nowhere else these people can express their grief. I learnt from them that
whatever may be the problem we must have the courage to fight with it. So, I
consider myself very lucky to get a chance to work for them. Even if I get a call in the
night from any of them I am available. Right now I am making a movie on cured MDR-
TB and TB patients after interviewing them to spread the message that TB is curable.
The members of our team talk

to patients about the problems
that they are facing (like the
side effects of medicines) and
after listening to their
problems try to find a solution.
We just listen to them
patiently and try to help them
in every possible way. We also
give them small tips—how to
massage the swelling at the
place of injection, how to cope
with pain/strain in the waist
region, how to do dressing of a
wound-- and if the patient is

43
completely on bed then we We also give them small tips—how to
encourage him to start walking. We
also encourage them to take low massage the swelling at the place of
cost proper and nutritious diet—take injection, how to cope with
jaggery instead of pomegranate for pain/strain in the waist region, how
iron intake. We ask them to eat
small portions several times, in case to do dressing of a wound-- and if
of loss of appetite. We tell the the patient is completely on bed
patients that the better their diet then we encourage him to start
the sooner they will recover. As they
are taking 13 to 14 tablets in a day walking. We also encourage them to
this becomes very necessary. We tell take low cost proper and nutritious
them that if there is a competition diet—take jaggery instead of
between 2 persons, and one of them
is stronger, the winner would only pomegranate for iron intake. We ask
be the stronger person and not the them to eat small portions several
weak one. times, in case of loss of appetite
We also refer the patients to the
doctor immediately if they face major side-effects like ringing in the ears or
breathing problem. If they have minor side effects like joint pain then we try to help
them out by giving them a massage. My team members are very dedicated. They know
that the disease is a very risky one and anybody who works in close proximity of the
patients can catch it but they are not scared. If we see any patient sitting lonely then
we go talk to that person so that he can speak his heart out and feel better. We ask
people to continue with their studies and tell them that it is not necessary to go to
school to get education; they can get it through open schools. We tell patients about
any scheme that has benefit for them.
It gives us a great feeling when some patient gets cured. We ask these cured patients
to tell other people that how they got well after bearing so many problems and how
our team members helped them in overcoming those problems.
We never wear masks when we talk to them so that they do not feel discriminated.
But we encourage them to use masks. Once we come out of one house we sanitise our
hands before visiting the next one.”
Dr Amod Kumar, Head, Community Health

Department:
“It is very important that the patient is given
assurance at home with the entire family being there
so that the counsellor can eliminate all kinds of fear
of all the family members, and create hope and
solidarity with the patient and family. Also it is not
possible at the clinic level for one person to counsel
several patients in crowded conditions. So, we

44
Darkness cannot drive out
darkness; only light can do
that. Hate cannot drive out
hate; only love can do that.
- Martin Luther King, Jr.

45
thought of this programme to actually go to the home of the patients and the patients
themselves came forward to support it. The next challenge was to find out people
who were willing to go to home of patients with MDR-TB as it is infectious. But
fortunately we got very dedicated people who were willing to come forward and help
such patients despite knowing all the dangers. Then we had to train them because
counselling of MDR-TB patients is a big challenge and can be done by a trained
counsellor only. We have an organization called Sarthak-- they develop special
modules and train our home care providers. Gradually we realized that many of the
patients were economically bankrupt, so their nutrition was a major concern. So, we
requested Lilly MDR-TB Partnership to support supplementary nutrition for MDR-TB
Patients. The team at the St Stephen’s Community Health Department put together a
special package consisting of high protein and low cost nutrition. We also tried to get
some resources, through government programmes or individual donors to help the
affected families become financially independent. For example, we helped one family
to set up shop; we helped another family to set up fax machine repair workshop. So,
home care workers not only give them knowledge but they also give them hope that
there is somebody to care for them. It is a mutually enriching experience. Counsellors
also feel very happy despite knowing all the dangers.”
Gradually we realized that many of the patients were

economically bankrupt, so their nutrition was a major
concern. So, we requested Lilly MDR-TB Partnership to
support supplementary nutrition for MDR-TB Patients. The
team at the St Stephen’s Community Health Department
put together a special package consisting of high protein
and low cost nutrition. We also tried to get some
resources, through government programmes or individual
donors to help the affected families become financially
independent. For example, we helped one family to set up
shop; we helped another family to set up fax machine
repair workshop. So, home care workers not only give
them knowledge but they also give them HOPE that there
is somebody to care for them

46
 Recognition of importance of counselling at different levels of TB care and control has
certainly grown over the past years and has given positive outcomes. PMDT services
has integrated multilevel counselling but number of counsellors, quality of counselling,
training needs, engaging cured MDR-TB patients more effectively as equal partners
with dignity, are some of the areas to further strengthen counselling and enhance
positive programme outcomes. As India envisions to achieve universal access to TB
care and control in next five years, it also includes universal access to quality
counselling and support at different levels.
 As post of counsellors has already been sanctioned by the government, recruitments
should be made at the earliest across the country, proper quality training in
counselling should be provided on a range of issues related to drug-resistant TB care
and control, and financial compensation to counsellors should be given on time every
month.
 We learnt from our interviews with care providers, MDR-TB and XDR-TB patients who
are currently seeking care from PMDT sites, and cured MDR-TB patients that there
were issues that can perhaps be better addressed through quality counselling. For
example, diagnostics (such as giving quality sputum samples, explaining why culture
and DST results will take few weeks or months, among others) and treatment literacy,
adverse side-effects of drugs and their management, contextual nutritional needs,
issues related to diabetes and TB co-morbidity, infection control in patients’ unique
context in household and community settings, addressing stigma and discrimination (if
any) by engaging family members and other people (such as school staff or work place
colleagues) in counselling sessions, tobacco cessation and alcohol de-addiction needs
(may be providing referral services), among others.
 There should be sincere efforts in terms of messaging and communication campaigns,
to normalize wearing of masks by patients as well as care providers. The stigma
associated with wearing of masks must be addressed.
 Many of the married women seeking care from PMDT sites we interviewed were not
getting support from their husbands and were rather supported by their parents. The
counselling needs with female patients are unique and need much greater attention.
There should be enough female counsellors to meet the unique counselling needs of
women who come to seek TB care. Counselling for women by women should address
issues related to pregnancy, child care and infection control, stigma and
discrimination, nutrition, among others. Partner or husband and other family members
should also be counselled adequately, especially to address stigma and discrimination
issues, and encouraged to support the woman on treatment where appropriate.
 Regular home-based counselling to address specific issues during the entire treatment
and care of patients (and their family members) in PMDT has shown to give positive
results. More NGOs and private public partnership (PPP) models should be utilized to
strengthen home-based care including counselling support.
 Cured MDR-TB patients we interviewed were instrumental in bringing back patients
who had left treatment midway in PMDT. Cured patients must be supported in PMDT
(even financially) to play a key role in counselling where appropriate.
 PMDT team members at all levels should be engaged in counselling as appropriate.

47
-

48
49
Diagnostic test Advantages Disadvantages Limitations
for drug-
resistant TB
SOLID - Mycobacterial culture and - Culture is much more - Specimens have
CULTURE identification of M. complex and expensive to be
(using solid tuberculosis provide a than microscopy to decontaminated
egg-based definitive diagnosis of TB, perform, requiring facilities prior to being
Lowenstein- significantly increases the for media preparation, cultured to
Jensen (LJ) number of cases found specimen processing, and prevent
media) (often by 30-50%), and can growth of organisms, overgrowth by
detect cases earlier (often specific laboratory other micro-
* The before they become equipment, skilled organisms. All
turnaround infectious). Culture also laboratory technicians, and decontamination
time for C-DST provides the necessary appropriate biosafety methods are to
results by Solid isolates for conventional conditions. some extent also
Culture is DST. harmful to
around 84 days - Results are invariably mycobacteria,
- Solid culture methods are delayed due to the slow and culture is
* BSL-III less expensive than liquid growth of mycobacteria. therefore not
laboratory is culture systems 100% sensitive.
must if ‘tube’ - DST methods are suitable Good laboratory
will be opened for use at central/national practices
for DST reference laboratory level maintain a
only, given the need for delicate balance
- Phenotypic appropriate laboratory between yield of
method infrastructure (particularly mycobacteria and
biosafety) and the technical contamination by
complexity of available other micro-
technologies/methods. organisms
- The accuracy of
DST varies with
the drug tested.
Phenotypic DST is
very reliable for
isoniazid (H),
rifampicin (R),
and streptomycin
(S), and
somewhat less
reliable for other
drugs such as
ethambutol (E)
LIQUID - Mycobacterial culture and - Culture is much more - Specimens have
CULTURE identification of M. complex and expensive to be
(endorsed by tuberculosis provide a than microscopy to decontaminated
WHO in 2007) definitive diagnosis of TB, perform, requiring facilities prior to being
significantly increases the for media preparation, cultured to
- The number of cases found specimen processing, and prevent
turnaround (often byBest
30-50%), and can growth
Practices in PMDT of |organisms,
in India July 2013 overgrowth by
50
time for C-DST detect cases earlier (often specific laboratory other micro-
results by before they become equipment, skilled organisms. All
Liquid Culture infectious). Culture also laboratory technicians, and decontamination
(MGIT) is provides the necessary appropriate biosafety methods are to
around 42 days isolates for conventional conditions. some extent also
DST. harmful to
- BSL-III - Liquid systems are, mycobacteria,
laboratory - Liquid culture increases however, more prone to and culture is
required the case yield by 10% over contamination and the therefore not
solid media, and manipulation of large 100% sensitive.
- Phenotypic automated systems reduce volumes of infectious Good laboratory
method the diagnostic delay to material mandates practices
days rather than weeks. appropriate and adequate maintain a
biosafety measures. delicate balance
between yield of
- DST methods are suitable mycobacteria and
for use at central/national contamination by
reference laboratory level other micro-
only, given the need for organisms
appropriate laboratory
infrastructure (particularly - The accuracy of
biosafety) and the technical DST varies with
complexity of available the drug tested.
technologies/methods. Phenotypic DST is
very reliable for
isoniazid (H),
rifampicin (R),
and streptomycin
(S), and
somewhat less
reliable for other
drugs such as
ethambutol (E)
MOLECULAR - Genotypic methods have - LPAs do not eliminate the - LPAs are
LINE PROBE considerable advantages need for conventional suitable for
ASSAY (LPA) for scaling-up culture and DST capability. implementation
(was endorsed programmatic management Currently available LPAs at
by WHO in of drug-resistant and HIV- are registered for use only central/national
2008) associated TB, in particular on smear-positive sputum reference
with regard to speed, specimens laboratory level,
- The standardised testing, with potential for
turnaround potential for high - M. tuberculosis isolates decentralisation
time for C-DST throughput, and reduced grown from smear-negative to regional level if
results by LPA biosafety needs. specimens by conventional appropriate
is around 72 culture methods. infrastructure can
hours - Molecular/genotypic tests be ensured.
are much faster than
- BSL-II phenotypic tests, as - Conventional
laboratory molecular tests don’t culture (solid or
required require growth of the liquid) is still

51
organism, and M. required to
- Genotypic tuberculosis is notoriously monitor
method slow growing. treatment
response (culture
conversion) of DR-
TB patients.
- Molecular/
genotypic DST is
highly reliable for
rifampicin, but
has limited
sensitivity for
detection of
isoniazid
resistance
Xpert MTB/TIF - Genotypic methods have - Capacity of one device is - Xpert MTB/RIF
(endorsed by considerable advantages limited to 20 specimens per requires
WHO in for scaling-up day. Higher-volume settings uninterrupted and
December programmatic management may require more than one stable electrical
2010) of drug-resistant and HIV- device power supply and
associated TB, in particular yearly calibration
- The with regard to speed, - detects rifampicin of the cartridge
turnaround standardised testing, resistance only, although modules. The
time for C-DST potential for high clinical treatment can positive
results by throughput, and reduced commence as per predictive value
Xpert MTB/RIF biosafety needs. guidelines, culture DST of Xpert MTB/RIF
is around 2 needs to be done is low in settings
hours. - Xpert MTB/RIF detects where rifampicin
both TB and rifampicin resistance is rare
- BSL-II or BSL- resistance in a single test. and results need
III not required Rifampicin resistance is a to be confirmed
(suitable for good and reliable proxy for by phenotypic DST
all levels of MDR-TB in high burden or LPA.
laboratories) settings
- Conventional
- Genotypic - Molecular/genotypic tests culture (solid or
method are much faster than liquid) is required
phenotypic tests, as to monitor
molecular tests don’t treatment
require growth of the response (culture
organism, and M. conversion) of DR-
tuberculosis is notoriously TB patients.
slow growing.
- Xpert MTB/RIF is
highly reliable for
rifampicin
resistance only
Source: WHO Information Note on TB Diagnostics and Laboratory Services, online at:
http://www.who.int/tb/dots/lab.pdf

52
Source: PMDT Guidelines in India, May 2012
MDR-TB DIAGNOSTIC TECHNOLOGY CHOICE

1. Molecular DST (e.g. LPA DST)
2. Liquid culture isolation and LPA DST
3. Solid culture isolation and LPA DST
4. Liquid culture isolation and Liquid DST
5. Solid culture isolation and Solid DST
(Source: PMDT Guidelines in India, 2012)

53
Component of unit cost figure of a laboratory procedure
Source: “TB diagnostic tests: how do we figure out their costs?” by Sohn H et al (2009)

54
We visited two National Reference Laboratories (NRLs): Lala Ram Swarup Institute of
Tuberculosis and Respiratory Diseases New Delhi and National JALMA Institute of
Leprosy and Other Mycobacterial Diseases (ICMR), Agra; and three state-level
Intermediate Reference Laboratories (IRLs): All India Institute of Medical Sciences
(AIIMS) New Delhi; Civil Hospital, BJ Medical College Ahmedabad; and New Delhi TB
Centre. We also visited one private laboratory of repute: Dr Dang’s Lab in Delhi.
NRL at National JALMA Institute of Leprosy and Other

Mycobacterial Diseases (ICMR), Agra
Dr D S Chauhan: Senior Research Officer, Microbiology and Molecular Biology:
“It would be best to test for drug
resistance at the start of TB treatment
itself.
LPA
In a single strip of LPA we have the probe
for two main drugs, rifampicin and
isoniazid. If the patient is resistant to any
of these, the bacteria will wind on that
strip. So within 72 hours we can find out if
it is resistant or sensitive to these drugs. It
would take 3 months to get the same result by conventional culture methods.
At present molecular testing can be done only for two drugs: rifampicin and isoniazid.
For other drugs we do the conventional culture testing. But scientists are now working
to put another strip in LPA which has the probe
for another drug also.
XPERT MTB/RIF
It can detect resistance to rifampicin only. We
have had some cases where the patient is It would be
sensitive to rifampicin but resistant to isoniazid.
Such cases are more likely to come from rural best to test for
areas and especially in patients who are tobacco drug resistance
users. At some point of time they might have
been given streptomycin or isoniazid without at the start of
proper evaluation to cure their cough or cold. TB treatment
There is more mono-resistance in smokers,
‘gutkha’ eaters or users of other forms of itself…
tobacco. In Ghatampur village of Kanpur district,
we have a unit and this region has incidence of

55
tobacco use. Rifampicin is usually given here as
an antibiotic by ‘quacks’ in rural as well as
We have had some cases
urban areas to cure common ailments other where the patient is
than TB. This can lead to disastrous
consequences if they ever happen to develop
sensitive to rifampicin but
TB. So it is often the fault of the treating doctor resistant to isoniazid
which spreads drug-resistant TB due to a wrong
regimen or a wrong prescription.
BIOSAFETY LEVEL III (BSL-III) LABORATORY AT JALMA

This room has entry through
fingerprint and card reader to
prevent unauthorized entry.
There is a double door autoclave
to let the infectious material go
from one end and then the
cleaned one exits from the other
end. The system is maintained as
such to prevent all bacteria from
entering it. All students need to
pass an examination on good
laboratory practices relevant to
BSL-III laboratories, to get
authorized to enter this
laboratory.
There is also monitoring system to monitor the people who enter the laboratory; the
period for which they stayed in the laboratory; whether they wore apron and mask
and followed other protocols — all this is recorded with the help of
software.
The main laboratory has negative pressure throughout. There are

filters attached to filter out the bacteria. Sputum is centrifuged
and then instantly put for culture in the prepared media where it is
incubated at 37 degrees Celsius as it is the optimum temperature
at which the bacteria would grow. At higher temperatures the
bacteria will get killed. Liquid culture is done for patients who are
serious and whose report needs to get processed in short time
duration of 15 days. This is for confirmation that culture is
positive. After processing the results can be seen on the computer
screen, which I can access even from my home.
EMERGENCY SHOWER
It can be used in case of emergency, in case if some reagent falls
down and casualty occurs during testing. Meanwhile the person
changes, takes a shower and informs via the intercom.

56
DIAGNOSTICS FOR RESEARCH PURPOSES
AT JALMA (or difficult to treat cases) There is a
DNA CHIP FOR TB:
difference
In our laboratory we print the DNA chip between relapse
for TB patients. As soon as the TB bacteria
takes the drug, it effluxes it out (efflux
and reinfection.
mechanism), and does not digest the drug This can be found
given to it to kill it. For the first time in
India we at JALMA created a DNA chip
by molecular
which shows which genes are responsible fingerprinting.
for the efflux so that we can block those
genes to let the bacteria to take the drug
properly. We have made a DNA chip of 4
genes which were responsible for the drug
efflux. We got a 20 years patent for this in
2010.
MOLECULAR FINGERPRINTING
There is a difference between relapse and reinfection.
This can be found by molecular fingerprinting. Suppose
in one strain I can see 4 fingerprints and after relapse
again I get the same number then it means that
patient has not been cured as yet. But if I get 2
fingerprints then it is a case of reinfection with
another strain of TB.
DNA SEQUENCER
The DNA sequencer gives confirmation of whether it is
a real MTB through sequencing. DNA sequencing is
done when the patient does not respond to treatment.
The reason for not responding can be either the person
is having drug-resistant TB or does not have TB at all
(it could be some other bacteria). In case if we do not
find the sequence for bacteria we tell the doctor. Such
cases are very rare—around 1%.
MASS SPECTROSCOPY, ELECTRON MICROSCOPY

JALMA does ‘protein work’ too because functional
units of genes are protein. They use mass spectroscopy
instrument. There is also provision of a robotic system
to manage the large number of samples. The protein
from the gel is picked up by these robotic entities and
then the protein in the sample is digested. There is the
gel from the susceptible and as well as from the

57
resistant bacteria. The susceptible bacterium is killed
by the drugs, while the resistant bacterium is not
killed by the drugs. As proteins are the functional units
We try to evaluate
they play an important role in the phenotypic changes. whether a change
So we run two sample gels: the susceptible and
resistant - and then we compare the result with the
in protein
help of spectrum. We do get some changes in the two expression plays
types of bacteria. We have observed that 70-80% of
the proteins are common. We try to evaluate whether
any role in making
a change in protein expression plays any role in making it resistant
it resistant. We are also looking for some novel protein
that can act as a novel marker for resistance. If we get
that protein we can evaluate the patient as a case of
MDR-TB. We also use the electron microscope to study the structure of bacteria and
also the efficacy of drugs.”
IRL at Civil Hospital, BJ Medical College, Ahmedabad,

Gujarat
Dr Amar Shah, WHO Consultant to PMDT Gujarat:
“If any patient on Cat-1 does not respond to treatment within 2 months we screen
them for MDR-TB. Again all retreatment (Cat- 2) cases on entry itself are screened for
MDR-TB now. All TB-HIV patients are screened. So there is no backlog. We are now
heading towards diagnosing even a fresh case of TB for resistance.”
Dr Pranav Patel, Microbiologist-in-charge, IRL, BJMC, Ahmedabad:

“Ours is the first IRL in India which has received
second-line DST accreditation.
SPUTUM QUALITY
Quality of sputum sample is very important to get
a correct and quick diagnosis. After getting
35,000 sputum samples, between 2009 and 2012,
we rejected only 76 samples (as they were
samples with blood). The samples with blood do
not go through the LPA because the blood
contains PCR inhibitors. These samples would
have to go through the process of culture testing
which would take around one and a half months
to get the result. Otherwise if the samples were
good quality without blood, then LPA can test
and give the result in 2-3 days. So to avoid delay in diagnosis we counsel the patients
to give good quality sputum sample without blood and any food particle in it. We also
sensitize the healthcare providers to collect the best sputum sample. RNTCP
guidelines also recommend that patients should be told the correct method of giving

58
sputum samples which include: gargling few times, cleaning the mouth properly and
ensuring food particles or blood may not come in the sample.
SPUTUM TRANSPORT MODEL

We pioneered the sputum transport model in India.
The sputum is transported from the district level We pioneered the sputum
in thermocol boxes having pre-freezed base. Then transport model in India. The
we put on the box the name of the patient and the sputum is transported from
criteria: A, B or C; and the district and PHC to
which the patient belongs. The DMC i.e. the district level in thermocol
designated microscopy centre and primary boxes having pre-freezed base
microscopic centre gives us the sample and then at minus 20 degrees Celsius at
we prepare the annexure 1 format which goes in
the collection box and the samples are sent to IRL the district level. Then we put
where they are kept under ideal conditions. on the box the name of the
patient and the criteria: A, B
Transportation of samples is not a problem in
Gujarat. Sample remains okay for 24 to 36 hours or C; and the district and PHC
after collection. But we get it by courier within to which the patient belongs
much shorter time of 18-20 hours. The boxes must

59
be kept at district level for 48 hours at -
20 degrees Celsius. The temperature is
maintained so as to keep the sample
solidified otherwise it will melt within 2
hours. We have proper storage facility at
all district levels. All our senior
supervisors, laboratory technicians and
staff at district level are trained for
collecting the sputum and transporting it
properly. The model for keeping samples
at low temperature is now approved by
central TB division (CTD).
LIQUID CULTURE
We get the liquid media directly from
Becton, Dickinson and Company (BD) as
we have no guidelines in the RNTCP for
preparation of liquid media.
We have to prevent media contamination

because if that is contaminated we again
have to go through the process of
collecting sample and processing it. We
have the bio safety cabinet here to prevent contamination in media as well as in the
sample.
LPA
Gujarat is the pioneer of LPA. LPA takes 34 hours.
We have also devised methods for direct sputum microscopy and to receive samples
from the Central TB Division (CTD). So they are sending 2 samples. We do the direct
microscopy for the samples and if they are smear positive then we need to process a
single sample for higher tests such as LPA. But a year ago, we had to process both the
samples. So in this way we have reduced the workload as well as requirement of the
machinery.
PCR
We have the thermocycler for the amplification. In this instrument 10-12 samples can
be processed in on ego. GT Blot is used to get the amplified product.
During treatment, MDR-TB patients have to send their sputum samples 11 times for
follow up. On the basis of our data for the last 3 years (2009, 2010, 2011) of 7000-
8000 patients they have made the policy that for each patient only 1 sample needs to
be given every time (instead of two as was being done earlier). We are also doing
another operational research in which we process only one sample for all smear
negative patients. Before that we were taking 3 samples to diagnose TB. But

60
thereafter, the programme decided to do it with 2 samples and now we have made an
attempt to do it with a single sample. We have done this to decrease the loads of
IRLs.
We collect the samples and slides from various places and then process them under
the direct microscopy under strict quality control just to ensure that there are no
false negatives. We do this every month for quality control.
IRL at New Delhi TB Centre

Dr Hanif:
“We upgraded out existing laboratory to BSL-3 level about three years ago (in 2010).
We follow all RNTCP guidelines strictly and standards
of good laboratory practices, such as ensuring proper
air circulation per hour among other parameters so
that infection is not transmitted to others and
laboratory can function properly.
XPERT MTB/RIF
RNTCP has approved of Xpert MTB/RIF but is still
debating about their operational feasibility—whether
to place them at district level, or at microscopy
centres, or at state level. At one time this machine
can process only 4 samples in 2 hours. So in one day
we can process a maximum of 16 samples. In LPA we
can process 40-50 samples in a two days cycle.
We do liquid culture here also which takes 2 Bio Safety Level II (BSL-2)
to 3 weeks.” laboratories do not have
Dr Vidyanidhi: negative pressure. But for the
“Bio Safety Level II (BSL-2) laboratories do sample preparation, sample
not have negative pressure. But for the procedure, and extraction of
sample preparation, sample procedure, and DNA, the environment requires
extraction of DNA, the environment requires
negative pressure which is available in BSL-3 negative pressure which is
laboratory. We have to have strict infection available in BSL-3 laboratory.
control so as not to contaminate the sample. We have to have strict
We have a dedicated material transport infection control so as not to
vehicle. The samples are put on it and our contaminate the sample
technical staff transports them to the
receiving window outside. As per the Bio-
Safety Level Laboratory Guidelines, the sample and the reagents have to move in one
direction only, through power flow in that particular closed chamber. So the infection
is also controlled. The environment is cleaned through ultraviolet (UV) rays.”

61
LPA
Once we process the sample then we extract the DNA and then this DNA is processed
by LPA. In BSL-2 laboratory we have 3 separated chambers for LPA: one each for
mixing, amplification, and hybridization.
BSL-3
In the changing room, we wear all personal protection (PP) equipment (such as a new
N95 mask, shoe protection, a special apron, goggles in some cases, etc) in sequential
order. We have to check the mask compatibility and integrity too. No air should come
in from the sides of the mask to ensure that it is properly placed on the face. There
should be no leakage.
We can use one N95 mask for a maximum of 8 hours. Normally we work for 4 hours in
the laboratory in one day and so we can use the same mask for two days. One N95
mask costs around INR 400 (USD 8) in the open market but we get it at a lower price.
There is a special interlocking device for opening and closing of entrance door of the
BSL-3 laboratory. We can also check the number of people who have been in the
laboratory earlier. We have to maintain optimum temperature and pressure. If we
want to open one door, we have to close the other door first. If we open both doors
at the same time, then negative pressure will get dis-balanced. That is why we have

62
interlocking system in laboratory. As per WHO recommended guidelines, minus 35 to
minus 50 Pascal pressure must be maintained.
As per the guidelines, every nook and corner of the BSL-3 laboratory is regularly
fumigated with water and formaldehyde.
Once the sample is decontaminated and processed it is then segregated and brought
to the other 2 biosafety cabinets—one part goes for LPA (after DNA extraction) and
the other for liquid culture. We have liquid culture facility where we use the machine
referred to as Becton Dickinson (BD)’s MGIT.
Once MDR-TB is diagnosed, then patient’s samples

are sent for testing periodically during intensive
phase (IP) and continuation phase (CP) of
treatment to see if they are still positive or not.
We are also testing smear negative cases through
liquid culture.
Previously we used to perform solid culture which

took longer time. With liquid culture we get the
result in less than 15 days (maybe 9-10 days).
Once processing and testing of samples is

63
completed then we will send our samples through this negative power flow. They are
kept in exit transport behind which we have to have proper infection control.”
LRS Institute For TB and

Respiratory Diseases, Delhi
Dr Ajay:
“The culture medium has to be sterilized in the
incubator in the media preparation room because
they are air-containing media and we cannot
autoclave them.
LIQUID CULTURE AND LPA

Only two people are allowed at a time inside a
BSL-3 laboratory. The first step is to prepare to go
inside the BSL-3 laboratory where sample cleaning
and DNA extraction among other processes is
done.
Once the DNA extraction has taken place in BSL-3

laboratory, rest of the procedures of LPA are done
in BSL-2 laboratory. BSL-2 laboratory is divided
into 3 sterile rooms; one each for mixing,
amplification, and hybridization.
Thermocycler is used to amplify the DNA after

mixing the extracted DNA with requisite chemical
reagents. Once it gets amplified in the desired
number then we can analyze and give the final
result. The whole process takes 2 to 3 days. This
is molecular testing referred to as LPA.
According to the RNTCP’s PMDT guidelines, all sputum-

smear positive samples are tested using LPA for
mycobacterium and also for isoniazid and rifampicin
resistance. However if the sputum is smear negative then it
will go for the liquid culture and if liquid culture is positive
then we will do the LPA.
XPERT MTB/RIF
We have the Xpert MTB/RIF but it is still under PMDT’s
evaluation so it is not being used for testing routine patient
samples. We have done our own evaluation process and are
currently using the machine for research purposes as of
now.”

64
65
Dr Ragini:
LPA
“We are using a Hain company’s
kit for LPA which is called anti-TB
GenoType MDR-TB Plus 2002. LPA
strips are based on the molecular
detection of the mutation in the
gene. Sputum samples of Category
-1 and 2 patients who are not
responding to treatment are
tested with LPA.
LPA can test for resistance to two

drugs in our laboratory:
Rifampicin and Isoniazid. The strip
has wideband patterns.
I will show you one example of

MDR-TB. Here you can see this is
resistant for Rifampicin as well as
Isoniazid. In this there is a missing
wide type 8 band, and we got a
mutation here. So we can say this
patient is resistant to Rifampicin.
This is a molecular based rapid
technique and within two days we
are able to diagnose whether the
patient has MDR-TB or not.
If at four months to six months

follow-up the sputum is still
culture positive, then we suspect
it to be a case of XDR-TB. Then
the culture sample goes for the
second line testing at LRS which is
our National Reference
Laboratory. This facility is not available at any IRL in Delhi. Here at AIIMS we are
trying to get this facility too.
LIQUID CULTURE
We use liquid culture to test for sensitivity to four drugs: Rifampicin, Isoniazid,
Streptomycin and Ethambutol. Either we can do liquid culture after LPA results or we
can do both tests together alongside each other.

66
XPERT MTB/RIF
We have Xpert MTB/RIF in our
laboratory and we can test samples
if so indicated, results of which
come within 2 hours.
SOLID CULTURE
Solid culture is still our golden
standard and perhaps we may never
be able to replace it with any other
modern technique at least in the
present context. In solid culture we
are able to differentiate between
the colony morphology, colour and
pigmentation of the bacteria, but in
liquid culture we are not able to
differentiate between all these
parameters.
We can do testing by solid culture

for first line for these four drugs and
for the second line drugs also. Very
soon we are planning to do second
line DST by the solid culture and by
liquid culture also.”
Mr Rajnarayan, microbiologist:
“We are using home-made media for
solid culture for DST. We make our
media for solid culture and also
have negative pressure facility for
inoculation. Our laboratory

67
participates annually for the professional testing with the NRL at LRS and for the last
two years our accuracy has been 95% - 98%. We incubate the media here too. Wearing
of N95 mask is mandatory in our laboratory.
Right now we are doing DST using solid culture for first line drugs. For rifampicin we
are using 1% proportional method (For Rifampicin we are taking 40 microgram per ml
and for isoniazid 29 microgram per ml).
We send the test reports through email and/or SMS to the respective DTOs.”
Dr Dang’s Lab
Dr Navin Dang:
“We are very particular about the
quality of reagent. The quality of
reagent and sample is important for
getting good results. This is the major
thing that lacks in most of the
laboratories. We calibrate our cold
rooms once every 2-3 months. Quality
control team maintains the temperature
of the cold rooms daily. The
temperature inside the room is below
zero. We have a protocol for keeping the
samples for some period. We keep the
samples stored here as they might be
required for some repeat tests or for some
other test in near future.
The samples are always taken by the doctors.

Every sample comes with a barcode. Apart
from maintaining quality another specialty of
The quality of
our laboratory is that we have all our reagent and
machines in duplicate. This is done to sample is
manage the sample load so that if there is
any breakdown the work does not suffer and
important for
the reports are given on time. getting good
results. This is the
Before we start a machine the first thing that
we do is quality control. So, all the samples
major thing that
go through quality control and after all the lacks in most of
parameters are qualified we run quality the laboratories.
control for both the machines. The machines
are calibrated as per the schedules. The
parameters are calibrated as such. We follow

68
the quality control parameters very strictly
as on world class basis. All the instructions All samples are routinely tested
are followed by all the staff members. through microscopy apart from
Another unique thing that we have is the
cooling centrifuge. As it becomes extremely
other advanced tests. It has to
cold in winters and hot in summers in India, be validated by doctors and
samples may be affected in a normal only then it is authenticated.
centrifuge. But here the centrifuge works at
a particular optimum temperature
Every sputum sample goes
irrespective of the outside temperature. We through pathologists’ eyes
have an automated system for coagulation. before it gets validated. Every
We are very particular about the safety of
staff. sample has to be stained.
MICROSCOPY
All samples are routinely tested through microscopy apart from other advanced tests.
It has to be validated by doctors and only then it is authenticated. Every sputum
sample goes through pathologists’ eyes before it gets validated. Every sample has to
be stained. The slides are numbered properly thereafter. The system automatically
reads the sample barcode-wise.
Our microbiology laboratory is segregated from other laboratories as it is considered

the most infectious area. We have a separate area for TB testing also. The media is
prepared here and then autoclaving is also done here. The incubator is also here.
We are yet to start using the LPA.
There is a spill kit to be used in case of emergencies. We follow special waste

management techniques. For instance we cover our dustbins with different colors of
plastics like yellow is for discarding samples, red is for infected samples. We also have
certain waste management agencies involved.”

Dr Surya Kant, Professor and Head,
Department of Pulmonary
Medicine:
“In my opinion sputum culture
should be done at that instant only
when patient comes for simple TB
testing.”

69
70
 Laboratory strengthening has been one of the major pillars of PMDT in India.
The mechanisms of NRLs and IRLs are in place, training capacity and re-training
of laboratory team members are in place, conventional and new molecular
standard diagnostic tests are being scaled up, and laboratory strengthening
processes is surely gifting TB care and control with better diagnostic
competence across the country. This process needs to continue as it is surely
one of the basic pillars of TB care and control: early and accurate diagnosis.
Political will and financial investment should be optimally scaled up to help
expedite this strengthening of diagnostic and laboratory capacities across India.
 Quality sputum collection was one of the key issues highlighted in our
interviews with PMDT laboratory team members. Adequate counselling of
entire TB staff and volunteers on the correct way of giving sputum sample
should be given.
 Strengthening of sputum transport systems should be expedited to timely bring
quality sputum samples to the appropriate laboratories across the country. The
standard sputum packaging model endorsed by PMDT in India should be adhered
to and staff trained and monitored to follow these guidelines as it is very
important for early and accurate case finding.
 Uninterrupted laboratory supplies including masks and other infection control
requirements must be ensured at all laboratories across the country. It is
important to counsel laboratory staff on importance of bio-safety level (BSL)
guidelines and protocols and reinforce counselling at every opportunity.
 Laboratories must ensure that all their staff and team members are strictly
adhering to all guidelines, good laboratory practices, and infection control
protocols. Regular adequate supplies of gloves, N95 masks, protective aprons,
shoe covers, goggles (where necessary), quality reagents, sputum cups, among
others, must be ensured.
 Ban on TB serological tests should be strictly enforced across the country.
 Entire laboratory staff is already being trained in conventional and new diagnostic
techniques. The quality of these trainings and reinforcement of key messages should
be upheld. NRLs are already playing an admirable role of doubly making sure the
reports of IRLs are validated from time-to-time. These practices should continue as
NRLs and IRLs both have unique roles to play.
 Laboratory fumigation, UV ray cleaning, regular air exchanges, quality checks of
different diagnostic machines, temperature and pressure control as needed,
uninterrupted power supply, and all other protocols should be strictly upheld.
 Patients and their family members should be adequately counselled by TB care and
control staff on diagnostics and laboratory services in India. For example, it needs to
be explained as effectively as possible on importance of DST and time required tests
will take to keep the patient in the programme, and not dissuade him to seek care
from alternative sources.
 Communication between laboratory services and relevant STOs and DTOs, DTOs and
DOTS centres, and DOTS centres and providers should be as efficient as possible for
early case finding.

71
72
“Laboratory strengthening did not have a prominent profile in
that plan [Global Plan to Stop TB, 2006-2015]. In 2008, the Global
Laboratory Initiative (GLI) was created as a new Working Group,
to give a much higher profile to the crucial need to strengthen
laboratories, which are essential for the diagnosis of all forms of
TB. An update of the plan [2011-2015] allows a higher profile to
be given to laboratory strengthening”
Source: Global Plan to Stop TB: 2011-2015

73
74
Dr Kamal Verma, Department of Medicine:
“At AIIMS, PMDT started in 2009 and it is one of the 4 PMDT sites which Delhi has
currently. There are four chest clinics attached to this centre: Motinagar, NDMC,
Nehru Nagar, and Deen Dayal Upadhyay (DDU).
TREATMENT PROCEDURE
Ideally it should take at least 2 weeks to put an MDR-TB patient on Cat- 4 treatment
once the sputum sample is collected and sent for tests. When a patient from say any
area of Delhi is diagnosed with MDR-TB, he/she then goes to the nearest DOTS clinic
and from there is sent to the respective chest clinic. The DTO at the chest clinic fills
an RNTCP form called Annexure 5 and sends the patient to our PMDT site with the
form and culture report. Now we have to pre-evaluate the patient before starting
treatment to rule out other medical conditions if any, like HIV, thyroid (as MDR-TB
drugs cause hypo-thyroidism as a possible side-effect), and diabetes among others.
We also do ECG and chest X-Ray of the patient. All these investigations are done free
of cost. We have to take the patient’s consent for starting treatment.
After doing pre-evaluation of the patients we prepare a PMDT Treatment Card and
send the patients to Rajan Babu Institute of Pulmonary Medicine and TB (RBIPMT) for
treatment initiation. There they are admitted for a minimum of 7 days to check if
they can tolerate the drugs and do not have adverse drug reactions (1%-2% patients
are not able to tolerate kanamycin injection reactions). Then the patient is
discharged with 7 days medicine for transit
period and RBIPMT sends us an email too. After We also have a regimen
receiving the email, we inform that particular for the migrant
chest clinic to arrange for the patient’s population. We provide
medication.
them with a postcard.
If any problem occurs with the patient during So they go and give it to
follow up —culture is positive again -- then the nearest DOTS site
he/she is sent by the MO for culture test here.
The MO or a doctor here fills up the Annexure 2 and thus we come to
referral form. When the sputum report comes know that the person is
from the AIIMS laboratory an email is sent from registered there as the
the laboratory itself to the chest clinic whether
the patient is positive or negative. If found postcard is sent to the
positive the laboratory sends another filled form STO. If the post card is
to us and we pre-evaluate the patient. After not received then the
pre-evaluation we send the patient to RBIPMT,
and also inform them by email that a patient tracing for the patient
has been sent. After three days we find out starts at the earliest

75
telephonically from them if the Nutritional diet plays a key role in
patient has reached or not. In case
the patient does not reach the combating MDR-TB and also
hospital then we inform the DOTS site ensuring treatment adherence. It is
from where he/she was referred. The important for TB patients to eat
personnel there try to trace and
convince the patient to take good nutrition in order to develop
treatment in order to prevent further strong immunity to fight the disease
transmission. and tolerate the toxic side-effects
The patients who come here are of medicines. The history of most of
generally referred from DOTS centres. our TB patients (including those
But we also have patients who are from upper strata) shows that they
coming directly to our OPD. Once we
diagnose them they are referred to are poor eaters and do not take a
their nearest DOTS centre. After the proper diet at proper time.
patient visits that DOTS centre, the
necessary papers are made and after the patient takes them from there we trace the
patient to confirm whether he/she had gone to that place or not. We get patients
from Haryana, Punjab, Jharkhand and many other states as well.
We also have a regimen for the migrant population. We provide them with a postcard.
So they go and give it to the nearest DOTS site and thus we come to know that the
person is registered there as the postcard is sent to the STO. If the post card is not
received then the tracing for the patient starts at the earliest.
Nutritional diet plays a key role in combating MDR-TB and also ensuring treatment
adherence. It is important for TB patients to eat good nutrition in order to develop
strong immunity to fight the disease and tolerate the toxic side-effects of medicines.
The history of most of our TB patients (including those from upper strata) shows that
they are poor eaters and do not take a proper diet at proper time. We find that there
is greater problem of Extra Pulmonary TB (EPTB) in urban population. Even after a lot
of motivation, some of the patients tend to run away from treatment due to the long
course and side-effects of medicines. Tracing patients who leave the treatment in
between is a big problem,
especially in case of migrants.” Smoking and alcoholism are two main
Dr Shalini (in the MDR-TB clinic):
problems likely to be in men which often
“Smoking and alcoholism are two affect their treatment adherence.
main problems likely to be in men Women are likely to adhere better to
which often affect their treatment but they suffer more because
treatment adherence. Women are
likely to adhere better to
of the unhygienic conditions in which
they are likely to be living, especially in
rural areas where hygiene is not paid
much attention
76
treatment but they suffer more because of the
unhygienic conditions in which they are likely to The other problem that
be living, especially in rural areas where hygiene women face, especially in
is not paid much attention. Some of our EPTB
female patients from rural areas do not pay
rural areas and urban slums,
attention to basic hygiene. So this could be a is that they stay indoors for
factor, though we do not have any data on it. The most of the time within
other problem that women face, especially in
rural areas and urban slums, is that they stay poorly ventilated houses
indoors for most of the time within poorly with a lot of cook stove
ventilated houses with a lot of cook stove smoke
pollution, whereas men do go out in fresh air and smoke pollution, whereas
spend less time in cramped homes. Women hide men do go out in fresh air
their problems too and the husbands have no
time to inquire about the spouses’ health.
and spend less time in
cramped homes. Women
The patients must be provided with some hide their problems too and
nutritional/monetary support, especially those
who are daily wage earners. Patient education the husbands have no time
and awareness is also very important.” to inquire about the
spouses’ health

77
Calcutta Rescue Centre,
Kolkata, West Bengal
Dr Aloknanda Ghosh, Deputy Chief Executive Officer,
Health and Operations:
“This centre has been treating MDR-TB patients since
1995. As per 2011 data our treatment success (cure)
rate is 61%.
This is not an indoor hospital, so patients are not

admitted here. These outpatients come mainly to the
morning clinic where we treat very poor patients from
Kolkata and rural West Bengal. From the PMDT we are
supporting two government aided TB programmes--one
in Kolkata (KS Roy Hospital, Kolkata) and other in rural
West Bengal. Also, patients who are not enrolled under Bobita with a MDR-TB patient’s medicine
the government setup are referred to us.
We treat all patients free of cost, so there is an eligibility criterion for them to
become eligible for seeking treatment here. Before putting a patient on treatment,
we do house visit of the patient, and if we find that they really cannot afford their
own treatment then only we put them on treatment.
Regarding treatment adherence we do follow a strict protocol. We take written

consent from the patient as well as from the patient’s family and from the
superintendent of KS Roy Hospital that unless they complete the treatment they will
not be discharged from the hospital. They get supervised treatment from the nurses
over there and we send the medicines. Sometimes, due to scarcity of beds, the
patients admitted in the hospital are discharged when they become sputum negative.
We do ask the patients’ family to bring them later to the local DOTS centre so that
some medical officer or any DOTS provider or any responsible family member who is
literate, can take the responsibility of supervising the drug. When they give consent
then only we start the treatment.
Sometimes due to cyclocerine toxicity patients develop psychological problems and

some of them leave the treatment. But these are very few in number. Treatment non-
adherence rate is 3% at our centre.
Patients referred from KS Roy Hospital do not come here every day for their
medicines but take it from the hospital only as we provide the medicines every 2 to 4
weeks to this hospital.
Nutrition is a problem too but as such if we find a malnourished patient in MDR-TB

then he/she is supported by our centre.”

78
Dr Amar Shah, consultant for RNTCP for the state of Gujarat:
“Patients from 13 districts are coming here for treatment initiation. We have two
senior doctors along with 8 to 9 resident doctors for these patients. They take care of
the patients 24 hours. Very many patients are coming from private to government set
up.
As per guidelines we have annexures 1 and 2 in the referral form. If the patient has
some adverse drug problem then he/she is sent here with same referral form. We fast
track the patients in the OPD—if they come with annexure 1 we know it is for pre-
treatment evaluation of MDR-TB. We do LFT, RFT, thyroid function test, blood
investigations, X-Ray. Then after 2 days we start Cat-4 treatment. We observe the
patient for 3-4 days. If patient is not facing any problems we discharge him/her with
some documents like PMDT Treatment Card for the patient, Discharge Card for
hospital, and i-card among others. We telephonically inform the district centre to
which the patient is going so that his/her treatment begins upon reaching there.
But now we are decentralizing the system and starting this pre-treatment evaluation
at district level also. Many patients were finding it inconvenient to come to our
centre for treatment initiation. Also, many
investigations can be done at district level Gujarat developed the model for
itself and very few cases require making patient-wise monthly drug
hospitalization. The practice now is that the boxes. Now this model has been
patient gets all pre-treatment investigations
approved in 2012 by CTD to be
done at district level itself and then the
scanned copy of the results is sent to the DR- used throughout the country. The
TB committee. A committee is also formed at reason for one month boxes is
the district level comprising the civil that all MDR-TB drugs are
superintendent and physicians. So we can temperature (<25 degrees Celsius)
interact with them either through phone or and humidity (<60%) sensitive.
email. Thus patients who hesitate to come
However, efficacy of drugs is
here can seek treatment in their own district
under the supervision of the district staff. maintained for a period of 6
months even if they are exposed
PMDT DRUG BOXES to sunlight and humid conditions.
We prepare one month drug boxes for the MDR- We wanted to ensure that they
TB patients. Such type of arrangement was remain under ideal conditions as
piloted for the first time in Gujarat. Gujarat far as possible. So at the state
developed the model for making patient-wise
level we have the state-of-art
boxes. Now this model has been approved in
2012 by CTD to be used throughout the drug store (at BJMC) with
country. The reason for one month boxes is temperature and humidity
that all MDR-TB drugs are temperature (<25 controls. We have also upgraded
degrees Celsius) and humidity (<60%) sensitive. all the 30 district centres with AC
and humidity control monitors.
79
However, efficacy of drugs is maintained
for a period of 6 months even if they are
exposed to sunlight and humid conditions.
We wanted to ensure that they remain
under ideal conditions as far as possible. So
at the state level we have the state-of-art
drug store (at BJMC) with temperature and
humidity controls. We have also upgraded
all the 30 district centres with AC and
humidity control monitors. But we do not
have these optimal drug storage facilities at
the peripheral level of PHCs and sub
centres. So from the district level, only 1
month boxes are issued to the DOTS
providers at peripheral level. So storage
becomes easier. We have designed special
14 grooved boxes (patient of highest weight
band requires 14 tablets). This can be used
even by uneducated peripheral DOTS
providers, who just have to give one tablet
from each of the compartments—there is no
need to count the appropriate number of
tablets to be given for that particular
weight band.
We have type A, B and C boxes: Type A for

patients in Continuation Phase (CP); type B
for patients in Intensive Phase (IP) when
kanamycin is also added. So just by knowing
the type of boxes with the DOTS provider
we come to know patient’s profile that
whether he is in IP or CP. In IP patient has
to take injections. If patient is not
tolerating any of the drugs then we have
provision of replacing kanamycin with PAS,
as per guidelines, which comes in the box

80
type C. so it is clear that all patients will be given type A, Treatment
and if they are in IP, injection will be added. adherence issues
Now the treatment non-adherence rate is 5%-10%. are due to several
reasons. Firstly, it
PRIVATE PUBLIC PARTNERSHIP (PPP) is the long duration
In Gujarat we already have the involvement of private of treatment.
doctors in TB treatment. So patients who do not want to
come to government can go to private doctors. We leave Secondly, it is
their drug boxes there and they can get the medicine. This alcohol. Once the
is working very well in certain cities like Rajkot and
patients recover
Ahmedabad. The IMA president and secretary are proactive
at the state level for its proper implementation. In this the they start feeling
private doctor will follow RNTCP guidelines and the patient that there is no
would not be forced to come to the government hospital. need to take
So the DOTS provider could be a private doctor of the
patient’s choice. The private doctors are happy in the sense precautions
that though they are not earning more money, they are anymore. There
earning the goodwill of the patients who are getting proper must be proper
and free treatment of MDR-TB and moreover that patient is
bringing more general patients to the doctor. We try to communication
convince doctors from private setup that we are not trying between all the
to steal their patients-- rather we want to support them for healthcare workers,
a common cause. We do not want to shift the patients from
the private to public. We know that 80% of people in India and coordination
are seeking help in private medical sector and so we cannot between staff is
reach everyone without their support. We have involved also required to
homeopathic and ayurvedic doctors as well. All private
doctors are also free to use our diagnostic facilities free of ensure patients’
charge for testing MDR-TB. The only condition is that they faith in the set up.
do not charge their patients for all this. If the patients’
FIGHTING STIGMA THROUGH INNOVATIONS adverse drug
There is stigma in the society. If the child gets TB the reactions are
parents try to hide it from others, especially if it is a girl attended to, they
child. So at times in cases of female patients we provide
the family some ideas on how women can come to receive do not lose faith in
medicines by respecting confidentiality and without letting the system and feel
the others come to know about it. For taking TB medicines satisfied that the
we tell the woman to make excuses of going to temple or
somewhere else and in this way she is accompanied by her healthcare workers
husband to the DOTS plus centre, without the entire family do care about
and neighbours coming to know about it. Many such them. It is all about
innovative things are going on at grass roots level to ensure
treatment compliance.” building mutual
trust

81
Dr Leuva, DTO Ahmedabad Municipal Corporation
(AMC): The basic problem
“In my long experience of treating MDR-TB patients I for treatment
found that there are treatment adherence issues due to
several reasons. Firstly, it is the long duration of adherence is that
treatment. Secondly, it is alcohol. Once the patients our patients are
recover they start feeling that there is no need to take malnourished. Our
precautions anymore. There must be proper
communication between all the healthcare workers, data shows that
and coordination between staff is also required to nearly 80% people in
ensure patients’ faith in the set up. If the patients’ our state have low
adverse drug reactions are attended to, they do not
lose faith in the system and feel satisfied that the BMI. The sputum
healthcare workers do care about them. It is all about culture reversal and
building mutual trust.” treatment failure is
Dr Rajesh N Solanki, PMDT Nodal Officer, Gujarat: basically an outcome
“The basic problem for treatment adherence is that of low BMI. If
our patients are malnourished. Our data shows that patients’ nutrition
nearly 80% people in our state have low BMI. The would improve then
sputum culture reversal and treatment failure is
basically an outcome of low BMI. If patients’ nutrition definitely treatment
would improve then definitely treatment adherence adherence would
would also improve. Another reason is adverse drug also improve.
reactions. All the second line drugs are very toxic with
serious side-effects. To overcome this problem proper Another reason is
counselling and management at field level is required. adverse drug
We are working on it since past 2 years and we are reactions. All the
supported by ELi Lilly where Dr PK Chhaya himself
works as a coordinator and we have observed that many second line drugs
patients with protein adequate nutrition have are very toxic with
continued with treatment and shown very good serious side-effects.
outcomes.”
To overcome this
Dr PK Chhaya: problem proper
“There is 75%-85% treatment adherence at this centre. counselling and
Of course it is easier said than done. The MDR-TB management at field
patient is already emaciated—with only bones and no
muscles. So if the DOTS provider is not very adept with level is required. We
giving injections, problems will arise as nearly 200 are working on it
injections are to be taken. We train and instruct our since past 2 years &
DOTS providers how to give injections. After giving the
injection we tell the provider to slowly rub the area we are supported by
where it was given for at least one minute—recite the ELi Lilly
Hanuman Chalisa. If this is done, then patients will

82
have no problem of pain We train and instruct our DOTS providers how
or of swelling. In our to give injections. After giving the injection
state, not a single we tell the provider to slowly rub the area
patient out of 2500
patients, has had where it was given for at least one minute—
injection sepsis. recite the Hanuman Chalisa. If this is done,
then patients will have no problem of pain or
We also provide
nutritional support to of swelling. In our state, not a single patient
some patients which out of 2500 patients has had injection sepsis.
acts like an allurement
for them to continue treatment.”
DRUG STORE AT BJMC AHMEDABAD

The Gujarat state drug store pharmacist Ms Ragini:
“Here we make the drug boxes for one
month for 30 districts of Gujarat. We just
make the patients’ boxes and send them to
the respective districts. This model is an
innovation of Gujarat and endorsed by
RNTCP for the entire country.
Note: The doctor shows that each

medicine box has 14 partitions, and
one tablet from each partition has to
be given by the DOTS provider to the
patient. One month supply is packed
in each box per patient. The boxes
are also made and labeled here.
The authorized company sends the drugs here and

then from those drugs 11 types of one monthly boxes
are repacked-- 5 regimens corresponding to the 5
weight bands, and in each regimen IP and CP. The
last one is type C—that is PAS—which has no colour
code because irrespective of the weight band we use
the drug accordingly. Right now, we get the supply
in sachets so there are 60 sachets to make one type
C. Thus a total of 24 boxes—18 blue coloured type A
boxes (for CP) and 6 pink coloured type B boxes (for
IP) cumulatively make the full course of the patient.
Boxes are designed in such a way that the 14

grooves/partitions accommodate the maximum
configuration of the doses (14 tablets at a time)
which is for highest weight band of above 70 kg. If 8

83
Drugs like Quinolones are
being misused for
grooves are filled then those 8 have to be taken by treating other diseases
the patient daily. All the details like daily doses are
written there. So, there is no need of calculation. also, like pneumonia and
It does not matter whether the patient is on IP or other pulmonary
CP. He/she just has to take one tablet from each of infections which mimic
the filled groves. The horizontal bar decides the
weight band. The 5 weight bands are <16kg, 16- TB. Moxifloxacin is
25kg, 26-45kg, 46-70kg and >70kg. another anti-TB drug
which is misused… Only
60% of the patients lie in the 26-45 kg band and
very few patients—just about 5%-- are above 70 kg. qualified doctors in the
These drugs require certain kind of storage private sector who have
ambience. As far as this centre is concerned it is been trained in TB
well equipped with the temperature management
and humidity measurement equipment. According management should be
to guidelines if medicines are exposed continuously authorized to prescribe
for more than 6 months to extreme temperatures standard quality-assured
they cannot be used. There are four DR-TB Centres
or PMDT sites in Gujarat as well as 30 districts, all medicines to MDR-TB
of which are equipped with temperature control patients
methods and so they receive 6 months’ supply of
drugs in this format only. At our place we have a buffer stock. The norm is that
monthly consumption multiplied by 7 has to be there for the district and multiplied by
2 for the PHC.”
King George’s Medical University (KGMU), Lucknow, UP

Dr Surya Kant, Professor and Head, Department of Pulmonary Medicine:
“Drug resistance develops when complete standard treatment regimens are
unavailable to patients. Drugs like Quinolones are being misused for treating other
diseases also, like pneumonia and other pulmonary infections which mimic TB.
Moxifloxacin is another anti-TB drug which is misused. I would suggest that the
authority to prescribe anti-TB drugs should be given only to trained and certified
medical doctors. Only qualified doctors in the private sector who have been trained in
TB management should be authorized to prescribe standard quality-assured medicines
to MDR-TB patients.”
KS Roy Hospital, Kolkata, West Bengal

Dr VR Pradhan, Superintendent:
“All patients of MDR-TB who are treated here are on re-treatment under criterion A.
Sputum samples are sent by the DTO to the IRL where diagnostics are done. After
diagnosis is done the patients come here for start of treatment. But now all patients
need not come to this hospital/PMDT site to start treatment. The concerned DTO can
do pre-treatment evaluation and send all the papers to the site here and if our DOTS

84
Initially there was a
plus committee agrees for the start of treatment, problem for women to
the DTO can start treatment there itself. Those come under the purview
who are sent here by the DTO for initiation of
treatment stay for a maximum of two weeks. After
of MDR-TB treatment for
registration and initiation of treatment at this fear of rejection by
centre, if they feel ok they we discharge them as their families. But now
per guidelines of RNTCP through DTO for follow up.
Then they go to their own district for continuation
once they are diagnosed
of treatment under the DTO who is in charge of the with MDR-TB we counsel
district. The DTO arranges for medicines and the families to take care
healthcare provider at the nearest DOTS centre for
the patient, close to the patient’s house. The
of the patient. If they
patient has to go there every day for medicines as refuse to do so then we
well as injections for the first 6-9 months (except provide food to them
Sundays).
along with the drugs. So
Patients have helpline phone numbers of DOTS now the problem is
office. If there is any problem they can take help being gradually
from me. For treatment adherence we will have to
remain in very close contact with the patients.
overcome
Initially there was a problem for women to come under the purview of MDR-TB
treatment for fear of rejection by their families. But now once they are diagnosed
with MDR-TB we counsel the families to take care of the patient. If they refuse to do
so then we provide food to them along with the drugs. So now the problem is being
gradually overcome.”
Lok Nayak Hospital, Delhi

Dr Ashwani Khanna, PMDT nodal officer:
“We treat DR-TB patients who are from
within Delhi and those patients who are
diagnosed with DR-TB but do not belong to
Delhi are referred to wherever they belong.
We are catering to 9 chest clinics, so we
have patients from 9 districts (out of the 26
districts in Delhi) coming here. Rich people
hardly come, but we do have patients from
the middle class. We have 3 or 4 patients of
extra pulmonary MDR-TB as recently we
have started diagnosing EPTB. Our
treatment success rate is a little over 50%-60%.
We have a monthly evaluation of data at our centre. We conduct monthly meetings

with all the 9 chest clinics allotted to us in which all the problems which patients are

85
The long duration
facing are discussed. We manage the complete data of the of treatment and
patient as to what would be the follow up; who will be doing the compulsion of
it; if patient is presumed to have MDR-TB then whether the
sputum sample will be tested using Cartridge Based Nucleic coming every day
Acid Amplification Tests (such as Xpert MTB/RIF, available in to the centre to
Lok Nayak Hospital) or sent to IRL for LPA or Culture testing take drugs could be
and DST. Such details are managed here in a proper record
form. other reasons for
non-adherence to
Treatment adherence is a problem that we face today as the treatment.
drugs have lots of side effects and so patients do leave in
between. Most of these are the ones who had left treatment Alcoholism and
midway earlier too. Then there are people who use excessive drug addiction are
alcohol, who are also at high risk of leaving treatment major problems
midway. The long duration of treatment and the compulsion
of coming every day to the centre to take drugs could be with some people.
other reasons for non-adherence to treatment. Alcoholism I think females are
and drug addiction are major problems with some people. I more treatment
think females are more treatment adherent.”
adherent
A doctor in the OPD explains the working system:
“All those who come here are diagnosed. And then they are
referred back to from where they came to start treatment
there. These are the referral forms in which all information of
the patient (including the name, diagnosis, date of start of
treatment) is filled in triplicate. The white slip stays with us;
the pink one is posted to the respective DOTS centre and
yellow one is given to the patient along with a post card
which has the same details and which the patient has to re-
post to us after getting it signed from the DOTS centre. So,
we have the feedback for everybody from any part of the
country who had been put on treatment at this centre. Then
we enter these details here and send an email to their centre.
Each form is filled in triplicate. Thus through post cards,
letters and emails we make sure that the patient has been
put on treatment. At the end of every month we do data
analysis.”
LRS Institute of TB and Respiratory

Diseases, Delhi
Dr Rohit Sarin, Director:
“As a tertiary care institution, we treat all cases of MDR-TB who come to us whether
within the programme or outside the programme. After the clinicians here diagnose
the patients they refer the patients to their respective centres (where the programme

86
exists) for subsequent treatment and follow ups. But where PMDT
does not exist as of today, our clinician deals with it at their own
level and try to monitor the patients as best as possible. So we have
lot many patients coming to us from different parts of the country
who are outside the government programme. We have around 550
patients under the programme and another 250 patients from outside
the government programme. We have one single district where we do
direct care where our workers supervise every dose. Then we have
about one third of Delhi (6 districts), where we are doing hospitalized
management and adverse drug reaction management as and when
required.”
Dr Neeta Singla, PMDT Nodal Officer:

“Treatment adherence is a bigger issue with men, may be because
women are more responsible towards their treatment. They know
that their disease is going to affect other people. More of non-
adherence to treatment is happening with men. Alcoholism, drug
abuse and tobacco consumption all these problems are much more
with the men, so, they tend to leave treatment midway. But women
patients have to face greater stigma. They do not get family support
or emotional support. Their nutritional status is also not good. They
are also often dependent on others to bring them to the centre for
follow up tests or if there are adverse reactions to look into. Hence
their follow ups get delayed. Very often they do not tell about
adverse drug reactions like
depression or psychological Treatment adherence is a bigger issue with
disturbances. The family also men, may be because women are more
thinks that it is all part of responsible towards their treatment.
the disease and there is
nothing to worry about. Alcoholism, drug abuse and tobacco
These side-effects must be consumption all these problems are much
brought to the attention of more with the men, so, they tend to leave
healthcare workers including
the DOTS providers. treatment midway. But women patients
have to face greater stigma. They often do
Personally, I feel that if I not get family support or emotional
know how important it is for
me to take medicines then support. Their nutritional status is also not
let me have the medicines good. They are also often dependent on
with me and I will be more others to bring them to the centre for
adherent to treatment.
Coming to the centre daily follow up tests or if there are adverse
for medicines could be a reactions to look into. Hence their follow
reason for non-adherence. ups get delayed. Very often they do not tell
But then again if the
medicine is given for home, about adverse drug reactions like
depression or psychological disturbances
87
it is likely that the patient would not take it, more so because of its severe side-
effects.”
Murshidabad Medical College and Hospital, West Bengal

Dr Kajal Krishna Banik, Medical Superintendent:
“We are admitting cases after doing rigid
evaluation jointly by all the departments and
members of the DR-TB centre. For 5 to 7 days we
admit patients to put them on treatment and
then ask the DOTS providers to follow up at their
residence.
We do have some patients who refuse treatments,

although their number is very small. This is mainly
due to the long term treatment with so many
drugs and drug toxicities. But our team members try to sort it out with knowledge and
motivation and hopefully after some time we will be able to bring all the infected
cases into the treatment fold.”
New Delhi TB Centre

Dr KK Chopra, Director:
“Delhi was the first state in India, after Kerala,
which started treatment for drug-resistant TB
patients throughout the state. We started with 5 or
7 districts and within three months we spread it
throughout the state.
PMDT was started in a safe manner because of

limited laboratory capacity, which was available in
some big institutes but not everywhere in India in
the beginning, when the programme was launched.
So the states where there was good laboratory
capacity (like in Delhi), PMDT gained strength. In
our centre we have got culture and DST facility. Second important thing is that in
addition to the laboratory capacity, we need infrastructure also because we need to
give daily DOTS to our MDR-TB patients, and we need to augment our activities in
DOTS centres. Patients have to be followed up for a minimum of 24 months, and then
there is a follow up sputum-culture examination which is done every three months.
Another thing which is required is training of the doctors. They have to be trained for
PMDT so that they can give proper treatment schedule, monitor any side-effects and
keep records. So there are two aspects: one is establishing laboratory capacity, and
the other is preparation and development of human resources in the districts such as
trainings. We also need to ensure that adequate infrastructure is in place and

88
standard protocols of good practices are
being strictly adhered to. For example, we
need to ensure that the PMDT site has
sufficient laboratories, rooms, drugs
storage, and other requisite facilities.
Another aspect is drugs: we have to match

our drugs boxes with the number of cases
which are diagnosed, because if we
diagnose the patient we have to give
treatment. Before PMDT begins in any state,
first we see if a laboratory is established
there or not.
Next step is for the state to ensure that the

district is prepared in terms of trained
human resources and other facilities. Then a
central team visits to validate their
preparedness for PMDT. The Central Team
will also evaluate if DOTS is fully
implemented with good results-- only then
PMDT will begin. PMDT is going ahead in a
phased manner and at present more than
90% districts (there are 640 districts in India) have rolled out PMDT services and our
target is that soon the whole country will be covered by PMDT services to gear up for
universal access by 2015.
We found that out of the 30% patient we lose (patients with presumptive MDR-TB who
were not put on MDR-TB treatment) about 8%-9% patients died during those three
months, because they were presumed to have MDR-TB but were not put on treatment
as they were waiting for diagnostic reports.
Another set of 8%-9% patients lost faith, because they knew they were not responding
to the treatment and we were giving them the same treatment during the time taken
to confirm the diagnosis and start MDR-TB treatment. So they went away to the
private sector to get treatment. Some of the patients were also lost to follow up as
we were not able to hold them back. In many places like Delhi there is a big
population of migrants who might have gone back to their native places.
Regarding treatment, we give free drugs. As for infrastructure, we already have DOTS
centres. The only thing is that we have to augment and train our DOTS providers
regarding MDR-TB treatment (which is prolonged and the drugs are toxic).
Another challenge was that initially we were getting low treatment success rates of
about 50%-60% in PMDT because perhaps patients were opting out of treatment due to
severe side-effects of the toxic second line drugs. Now, we are training our DOTS

89
providers and doctors for early identification and management of side-effects,
because if we identify the side-effects early we can manage them early on, and we
will not lose the patients. If we do not identify and manage them timely, the patient
is more likely to leave treatment midway. This can be done through more interaction
with the patients.
We have designed a very simple questionnaire for our DOTS providers. They ask the
patients whether they have got itching, swelling in the body, vomiting or other side-
effects. If there is, we immediately refer the patient to the doctor for management
of side-effects and encourage the patient to continue treatment.”
Rajan Babu Institute of Pulmonary Medicine & TB, Delhi

Dr Anuj Bhatnagar, PMDT nodal officer:
“TB medicines work best when taken together in one go (and not split in morning,
evening, afternoon doses) and they need not necessarily be taken on an empty
stomach.
This hospital is the only one where we have

around 150-200 beds, especially for MDR and
XDR-TB patients. In Delhi indoor admission
facility is available here and in LRS Institute
for TB and Respiratory Diseases. But the
maximum load of indoor patients is here as
even patients of AIIMS and Lok Nayak Hospital
are admitted here. Apart from that we have
logistic criteria wherein the patients come
with lots of papers/ forms. So we discuss each
case with our committee on starting the
treatment. The person diagnosed with DR-TB is
admitted here for a minimum of 7 days to
carry out all the investigations and to observe
if the patient is able to tolerate the treatment or not. After that we counsel the
patient and the family and tell them the reason why he/she has to be admitted here.
I tell the patient clearly that if he/she takes the treatment there are very high
chances of getting cured. We have observed that the patients who complete the
treatment have attained the success cure rate of 92%-95%. So treatment adherence
and catching the disease early is the most important thing here. If the patients come
late for treatment after extensive destruction of lungs has already occurred then they
take time to respond. And even if the patient gets cured then there are other
comorbidities that reduce his/her quality of life.
One new thing that we have started here is the follow up—once a patient is started on
treatment and sent back to his/her place there are different checks and balances. I
give a phone call to the respective district TB centre that we have received your

90
The programme also
says that sputum
patient. We register and admit the patient and tell the samples of contacts of
district TB centre about his/her weight band and ask
them to arrange for medicines as the patient would be
MDR-TB patients should
discharged from here after 7 days. Meanwhile the be sent for testing. We
patient and the family are counselled. When the have had 20 families
patient is discharged with 7 days of medicine for with more than one
transit, I make another call or send an email informing
the district centre. When the patient reaches there, MDR-TB patient. In one
the medicines have already been arranged. Also every family there was a
Saturday I have my OPD for patients’ follow up if they young patient (who
need any help regarding the side-effects of drugs. We
are giving all supporting medicines as well as protein died eventually of XDR-
supplements to them if need be. There are some NGOs TB) who first took
who help us with this. treatment in private
We also have a separate segment of programme where sector. Then his
in we treat the patients who are not referred to us brother, sister and both
from DOTS centres. This is called lateral entry into the parents also got MDR-
programme. We have an OPD for such patients on every
Tuesday and Friday. Now the number of such patients is TB. His brother is
falling as number of districts under PMDT has admitted here and
increased. Whenever we get any patient from outside
we do the diagnosis and mail the records to the
sister is also on
concerned district TB officer, the state TB officer, a treatment. We need to
copy to my state TB officer and a copy to CTD. The make sure that the
patient then starts medicines at his/her place only. follow ups of the
During the course of treatment there is monthly follow relatives are also done.
up. Each patient has a DOTS plus card with his/her It is also our internal
name, address, the date of last admission on PMDT site
and the date he/she was put on IP and/or CP. If the
policy here that we
sputum culture converts (becomes negative) within 4 follow up all cured
months of treatment then it is counted as a good patients for 2 years
response. If the sputum culture is positive even after 4
months of continuous treatment for MDR-TB then as per the programme guidelines,
the patient is tested for XDR-TB. This norm is strictly followed. The report of this test
takes very long. Field studies are going on for faster second line testing but they have
not been validated as yet, although WHO has said that second line LPA is quite
reliable and the report comes in 7 days.
We also ask the patients to bring their relatives to this centre to get tested. The
programme also says that sputum samples of contacts of MDR-TB patients should be
sent for testing. We have had 20 families with more than one MDR-TB patient. In one
family there was a young patient (who died eventually of XDR-TB) who first took
treatment in private sector. Then his brother, sister and both parents also got MDR-
TB. His brother is admitted here and sister is also on treatment. We need to make

91
sure that the follow ups of the relatives are also done. It is also our internal policy
here that we follow up all cured patients for 2 years.
The patient will develop resistance if treated with only one drug. If we can control
basic TB at the start with a proper therapy no resistance would develop. Even today
more than 91 combinations of medicines are used in the private sector which is a big
problem as it simply multiplies the resistance in the community.”
Dr Rashmi, Medical Officer, PMDT:

“The main impediment in treatment adherence is lack of information on part of the
patients. The symptoms subside but the treatment has to continue for 2 long years.
These medicines initially cause a lot of problems—vomiting, acidity, and joint pain
among others, despite which adherence has to be there. As the patient improves the
importance of completing the treatment has to be explained on each visit. Then
again, malnourishment is another problem.”
Dr Ngilang, district TB officer and CMO in charge of chest clinic:

“Some patients find it very difficult to adhere. Long duration of treatment,
alcoholism, migration from one place to another, and stigma attached with the
disease are some of the reasons that lead to non-adherence.”
St Stephen’s Hospital’s home-based care facility, Delhi

Dr Joyce Vagela, public health specialist, Community Health Department:
“Taking care of the adverse side effects of medicines plays

a very big role in restoring patients’ confidence and
ensuring treatment adherence. We have found that over 40%
patients have joint pains, 20% have nausea and vomiting,
15% suffer from anxiety. Besides these, there are numerous
other side effects, including weakness. Sometimes it
requires a lot goading for them to go to the centre every
day for their medicines. Proper nutrition is a big problem
especially in the IP phase, as there is not enough money in
the house for balanced diet.”
Taking care of the adverse side effects of medicines plays a very big
role in restoring patients’ confidence and ensuring treatment
adherence. We have found that over 40% patients have joint pains,
20% have nausea and vomiting, 15% suffer from anxiety. Besides
these, there are numerous other side effects, including weakness

92
 Despite TB being a notifiable disease in India since May 2012, all private healthcare
providers treating TB are not notifying it still. This information is critical to inform the
programme and help further improve its response to TB care and control. All
professional associations related to TB care and control, law enforcing agencies,
media, among others, should be effectively engaged.
 Engaging pharmacies in DOTS is a positive way ahead for India’s programme and must
be expedited with all required safeguards and cautions.
 Irrational use of anti-TB drugs needs to be regulated. Uninterrupted supplies of
standard quality-assured anti-TB drugs should be made available to private and public
sector where TB is being treated strictly as per guidelines.
 TB treatment must not be started without confirmed diagnosis of TB and drug
sensitivity testing (DST) if required, from RNTCP accredited laboratory. Even in private
sector there is a need to ensure that TB treatment is not put without confirmed
diagnosis from accredited laboratories. RNTCP is already considering private
laboratories where good practices are adhered to with proper checks.
 Quality counselling at every level of TB care must be provided, and cured TB patients
be engaged where possible to enhance treatment outcomes. Counselling and proper
management of side-effects as reported by the patient must be ensured.
 Stigma is a barrier to access existing TB care services. TB-related stigma in the
community and internalized stigma in those seeking care, must be effectively
addressed through myriad channels and innovative evidence-based mechanisms. Cured
patients have a unique role in this regard.
 Nutrition was identified as one of the factors impacting treatment outcome. Good
nutrition has a broader positive impact on health and appropriate linkages be
established of RNTCP with nutrition and food security programmes including the Right
To Food Bill currently in parliament. Other innovative mechanisms supported by
private public partnership (PPP) to support nutritional needs of patients under PMDT
should be explored, established and strengthened.
 Holding the patient in the programme during the wait for diagnostic results is
important. The patient and other family members should be effectively counselled on
why diagnostic results take time, and why treatment must not be initiated without
confirmed results. Restoring the faith of the patient and family members in the RNTCP
is crucial to retain patients all through the treatment and care.
 Supporting patients of drug-resistant TB in strengthening their income generation
activities or helping rehabilitate them is a key to sustaining positive outcomes of
PMDT. PPP offers good examples where cured MDR-TB patients were supported by
private sector such as Eli Lilly to find sustainable ways to earn their livelihood. Such
mechanisms should be explored and fully utilized to complement PMDT.
 Gender sensitive approaches should be more integrated in PMDT to help support TB
care needs of women and other genders.

93
94
Living with drug-resistant

95
Note: These stories highlight the personal experiences of people
who were diagnosed with drug resistant TB. The names of all
patients have been changed to respect their freedom of anonymity,
given the huge social (and internalized) stigma connected with the
disease, and associated with other factors such as poverty or HIV.
When he vomited blood one day…

48 years old Deepak, a driver in the
police department, was leading a
happy normal life with his wife and
3 children, when suddenly he
vomited blood one day, way back in
1997. The doctor diagnosed him
with pulmonary TB on the basis of a
chest X-Ray and put him on a 6
month ATT under DOTS. Deepak
was presumably cured and
remained okay for a year and a
half. Meanwhile he had been
transferred from Ramgarh to Uttar
Kashi. But then his problem recurred and he vomited blood again. He was put on
treatment once again in this new town, but he admitted to not being very regular
with his medicines this time and even missed some doses due to his own carelessness,
even as he was transferred once again from Uttar Kashi to Srinagar. He would stay
healthy for some time and then again become sick. He then took medicines for 9
months from a private doctor and felt completely cured although financially
devastated-- he had to spend around INR 30,000 on his treatment in the private
sector, but then at that time the government TB programme was not offering
treatment for MDR-TB. After remaining healthy for several years, Deepak took ill
once again in February 2012. This time he went to a DOTS centre in New Delhi (where
he was posted) and was put on medication. Simultaneously his sputum was sent for
culture, the report of which came in April 2012, confirming MDR-TB. The DOTS centre
then referred him to AIIMS on 12th of April 2012. The doctors at AIIMS sent him to
Rajan Babu Institute of Pulmonary Medicine and TB (RBIPMT) for pre-treatment
evaluation and treatment initiation (AIIMS does not have indoor admission facility for
TB patients, but has a liaison with RB TB Hospital to admit patients there). He stayed

96
there for one week and after that he has been
going daily to hid DOTS centre to take the
The day I met him in
medicines in front of the DOTS provider. the OPD of AIIMS
Deepak had come for
The day I met him in the OPD of AIIMS Deepak had
come for his three monthly follow-up. He told me
his three monthly
excitedly that he had been testing negative from follow-up. He told me
the fourth month of treatment onwards and was excitedly that he had
now in the continuation phase of treatment. The
ordeal of daily injections was over and he was
been testing negative
well on the path of recovery. As a matter of from the fourth month
precaution, Deepak stayed in his department’s of treatment onwards
hospital away from his wife and 3 children till his
sputum culture report was negative. Now he
and was now in the
wears a mask at home and practices all infection continuation phase of
control methods. treatment. The ordeal
Deepak has since become a TB advocate and if he
of daily injections was
comes across persons suffering from persistent over and he was well
cough and fever he urges them to go to a DOTS on the path of recovery
center for a free checkup and treatment there.
His message for other TB patients: treatment in
the Government setup is free and very reliable. This is a boon for poor people like me
and we should make use of the government facility if we happen to contract the
disease. The medicines for TB are very expensive in the private market. I spent
around INR 30,000 (approximately USD 600) while seeking treatment in the private
sector and yet was not cured—rather I developed a worse form of TB. One must take
the medicines regularly, eat nutritious food and stay away from alcohol and cigarettes
[all forms of tobacco].”
A pain in chest…
Dinesh works as a cook in Delhi. His family comprising his mother, wife, one son and
two daughters live in his native village in Almora—a hilly region in North India. About
a year ago, (around May 2012) he complained of pain in his chest. He showed himself
in AIIMS and was diagnosed with TB. He was put on Cat 1 treatment under DOTS. But
when the sputum report was positive even after 5 months, the doctors suspected drug
resistance. Dinesh was lucky to be in Delhi and luckier to be seeking treatment from
AIIMS- a tertiary care hospital with very good diagnostic facilities. The Line Probe
Assay confirmed resistance to isoniazid and he was immediately put on MDR-TB
treatment regimen in October 2012.
When I met him in February 2013 in the OPD of AIIMS, he had completed almost 5
months of medication from the DOTS plus site of AIIMS. His one report had already
come negative and the next one was to come in a week’s time. Of late Dinesh had

97
been feeling giddy and weak (side effect He was relieved that his daily
of drugs) but he is determined to injections would stop in a month’s
complete his full 2 years treatment
(treatment non-adherence is a time and he would expectedly
problematic issue with MDR-TB patients). move on to the continuation phase
He was relieved that his daily injections of medication. Dinesh confessed to
would stop in a month’s time and he
would expectedly move on to the being an avid ‘bidi’ (tobacco rolled
continuation phase of medication. Dinesh in a leaf) smoker earlier but said
confessed to being an avid ‘bidi’ (tobacco that now he is totally off tobacco
rolled in a leaf) smoker earlier but said
that now he is totally off tobacco and is and is careful about his diet
careful about his diet. He still wears a
mask to his work place but not always
when at his living place which he shares with others.
Persistent low Unfortunately, Rukmini’s daughter

contracted MDR-TB through her
grade-fever & mother and has been on MDR-TB
cough… treatment in the same hospital
since the last 6 months. The
40 years old Rukmini lives close to the
Civil Hospital of BJ Medical College in
attending doctor told me that,
Ahmedabad. She used to sell fruits to “Direct MDR-TB transmission
supplement her daily wage earner through contact is common. So if a
husband’s meager income till tuberculosis
struck her in 2010. She has a 17 year old
family member of such a patient has
daughter and an elder son who is MDR-TB we test for MDR-TB in the
married. Rukmini is illiterate but she beginning itself and if diagnosed put
managed to educate her children up to
elementary level. him/her directly on Cat-4 treatment
“Three years ago, in 2010, I started having persistent low grade fever and cough.
There was never enough money in the house, so I took treatment intermittently in the
private sector, as and when I had money. But one and a half years ago my condition
worsened. I was breathless all the time and could not even walk properly. So I
eventually came to this government hospital (BJ Medical College) where I was
admitted for 3 months for TB treatment but was eventually diagnosed with MDR-TB.
My family is very supportive despite the infectious nature of the disease. My husband
always accompanies me to the hospital.”
Unfortunately, Rukmini’s daughter contracted MDR-TB through her mother and has
been on MDR-TB treatment in the same hospital since the last 6 months. The

98
When I came to this
hospital one year
attending doctor told me that, “Direct MDR-TB
transmission through contact is common. So if a family ago, I was
member of such a patient has MDR-TB we test for MDR-TB bedridden. I could
in the beginning itself and if diagnosed put him/her not walk without
directly on Cat-4 treatment.”
When I met Rukmini in February 2013 she was admitted in help and could not
the MDR-TB Ward of Civil Hospital of BJ Medical College, even drink water.
Ahmedabad for breathing problems. TB had perhaps Now I have become
caused irreversible damage to her lungs. Although she has
already tested negative she is in and out of the hospital mobile once again
because of breathlessness. Still she feels that there has and the credit for
been a vast improvement in her condition as compared to this goes to the
when she began her treatment.
doctors and nurses
“When I came to this hospital one year ago, I was of this hospital
bedridden. I could not walk without help and could not
even drink water. Now I have become mobile once again
and the credit for this goes to the doctors and nurses of this hospital, especially Dr
Kusum Shah under whom I was admitted initially for 3 months. They have given me a
new lease of life. They have really counseled me well and I follow all their
instructions regarding infection control methods at home—I spit in a spittoon given by
the hospital, I bury my spit in mud, I keep my house very clean. I hope I will soon be
able to go back to my work of selling fruits and not remain a financial burden on my
loving husband.”
We should not take treatment in the
The attending doctor, Dr Purvi,
was all praises for Rukmini as she private sector. The MDR-TB drugs which
has been a very good patient and are given free at the government
has diligently followed all the centres are very good and all patients
instructions given to her by the
doctors. must take them. Nobody must stop the
treatment in between.
Rukmini’s message for other TB
patients: We should not take treatment in the private sector. The MDR-TB drugs which
are given free at the government centres are very good and all patients must take
them. Nobody must stop the treatment in between.
Listen to me as I do not want anyone to

go through what I am experiencing…
A tailor by profession, 28 years old Rakesh comes from a well to do family of rural
Gujarat. His village near Palanpur in Banaskanta district is about 150km from
Ahmedabad. I met him on February 19, 2013 in the MDR-TB ward of Civil Hospital at

99
BJ Medical College, Ahmedabad. He had been re-admitted there that very day due to
severe swelling in his legs.
Rakesh had been on MDR-TB treatment (Cat 4) for the past one year. Narrating his
story, Rakesh spoke with bitterness about his bad experiences with the private set up
while seeking treatment. He was also critical about the social stigma connected with
the disease that led to delay in his seeking proper diagnosis and treatment of MDR-TB
in a good government hospital.
Three years ago, in 2010, his persistent cough led Rakesh to a private TB physician
who put him on ATT. His cough vanished after six months of treatment and he felt fit
and fine again. But his state of wellbeing was short lived. After 6-7 months he started
coughing again. This time he went to a PHC close to his village.
“The health worker there asked me to bring some people from my village who would
give the guarantee that I would complete a 6 months’ treatment course. I did that
and took medicines religiously for 4 months. But instead of improving, my condition
worsened. My father and I begged the healthcare workers at the PHC to please test
me again and send my sputum for culture. But they insisted on my completing the 6
months course first. In desperation I left that treatment and again went to the same
private doctor from whom I had taken treatment earlier. I took medicines for another
one and a half year, including injections, spending INR 6000 per month on my
treatment. Yet there was no improvement in my condition. My doctor said that now
the cost of medicines will increase to 15,000 per month. Although I had no money
problem but this was really beyond my pocket. He was kind enough to give me the
address of Dr RN Solanki, PMDT Nodal Office, BJMC, Ahmedabad, Gujarat, and so I
came to this hospital for the first time in February 2012. I stayed in the hospital for 3
days and then went back to my village. Earlier also I had been on Cat-4 treatment in
the private. This time I was given 11 medicines
and one injection per day. I did not suffer any He spoke with bitterness
side-effects and continued with the medicines. about his bad experiences
After 6 months I had to go to Rajasthan for
some work. It was very hot there and one day I with the private set up
vomited blood. I had carried my medicines and while seeking treatment.
my medical file with me. I showed myself to He was also critical about
the government doctor there and he advised
me to take rest. I came back to my village and the social stigma
took complete rest for two months but again I connected with the
vomited blood. This was repeated again after disease that led to delay
a few months. I had not missed a single dose
of medicine but my health had broken down in his seeking proper
completely.” diagnosis and treatment
of MDR-TB in a good
According to Dr Purvi the swelling in his legs
was due to some adverse drug reaction and government hospital
also due to some other co-morbid condition

100
which he might be having. She informed that the patient has been going through the
phase of reversion and conversion. His culture report came negative after 3, 4 and 5
months, then positive after 6 months, and then again negative in the 7th and 9th
month. This is not uncommon and at times when Kanamycin is stopped the sputum
does test positive, after being negative in the intensive phase.
“My father and brother were very reluctant to bring me to this hospital for a checkup,
despite the doctor at the PHC asking them to do so. They are uneducated and think
that if a case is referred to this big hospital, it means it is a gone case. They think
that only very serious patients who are on death bed (with no hope of cure) are
advised to go to a tertiary hospital like this. They feared that I was being referred
here as I was about to die. They finally agreed because of my insistence and so I came
here today with my brother and my wife. I love my wife and my 5 year old son. She is
not educated but takes very good care of me.”
He joked that his beautiful and chubby wife cannot get TB as she is fat, but if she
were thin she might be at risk.
His message to other TB patients: People in the villages still think that TB is incurable
and is a death sentence. They also feel that government hospitals are no good. Even I
used to think that as treatment in private sector is expensive so it ought to be better
than that in a government hospital. This ignorance must be removed. We must face
the disease bravely and not be afraid or get dejected. If you are scared you will die, if
you are brave you will survive.
(Rakesh told me that this was the first time he had dared to narrate all this to a complete
stranger like me, with a view to share his story with others as he did not want anyone else to
suffer the same fate as he did out of ignorance and fear).
Adhering to
treatment,
but lost
hearing power
irreparably…
I met 19 year old Reena at the
MDR-TB drug dispensing counter
of RB TB hospital, New Delhi,
where she had come to take her
daily dose of MDR-TB medication.
Her hearing power had been

101
Six months of medication
impaired irreversibly due to side effect of cured her of her problem
medicines. So I communicated with her through and she got well. But after
pen and paper and she replied orally.
three years she was sent to
Reena began her TB treatment from this look after her married
hospital, six years ago in 2007. She had been sister who was suffering
suffering from shortness of breath along with
chest pain and was told that there is water in from TB (the sister died
her lungs. Six months of medication cured her eventually). She contracted
of her problem and she got well. But after three the disease again from her.
years she was sent to look after her married
sister who was suffering from TB (the sister died Reena was in class 9 at that
eventually). She contracted the disease again time but was forced to
from her. Reena was in class 9 at that time but leave her studies because
was forced to leave her studies because of her
illness. Her teacher asked her not to come to of her illness. Her teacher
school. She had reached the continuation phase asked her not to come to
of her treatment and was on the path of school. She had reached
recovery.
the continuation phase of
Her MDR-TB treatment started in this hospital in her treatment and was on
July 2011and she was put on continuation phase the path of recovery
in March 2012. Dr Anuj Bhatnagar informed that
she has been testing negative after 3 months of
treatment, which is an ideal response. She has taken the treatment well and has high
chances of a complete cure, more so because she is young.
Reena said, “I am now feeling much better. Earlier I was not able to walk properly
and I lost a lot of hair—I almost turned bald. Now I just have hearing problem
otherwise I am okay. My two married sisters died of TB, but I want to live and lead a
normal TB free life. I love to watch old movies and eat meat, fish and eggs. I would go
back to my studies once I am okay.”
TB rebounds, with drug resistance…

Anil belongs to a family of dairy farmers and owns a dairy shop in Delhi. He lives with
his wife, a 5 year old daughter, his parents, two brothers and their wives and one
unmarried brother. I met him at the MDR-TB drug dispensing counter of Rajan Babu
Institute of Pulmonary Medicine and TB (RBIPMT), where he has been on treatment
since November 2012, and is now in the continuation phase.
In 2010, when Anil was 30 years old, he suffered from persistent cough. He sought
treatment from a private doctor who diagnosed TB and put him on an 8 month long
course of ATT. He spent INR 70,000 (approximately USD 1400) on his medication but
was presumably cured. He stayed well for the next two years. Then one day in 2012

102
He has now become a TB
advocate in his own way and
he started coughing again and he had a guides patients to a
nagging doubt in his mind if the TB had
returned. This time he thought of seeking government facility for
treatment in the government setup as his diagnosis and treatment. His
earlier private treatment had resulted only in message for other TB patients
temporary cure. So this time he acted wiser
and showed himself for a checkup in RBIPMT - is: “Please do not waste money
- one of Delhi’s best health facilities for TB
treatment. The diagnosis confirmed MDR-TB on costly and improper
and he was put on treatment in November
treatment in the private
2012.
sector. A government hospital
When I spoke to him in February 2013, he
looked healthy and sounded very optimistic. is the best place where the
He praised the doctors who had been treating
him and said that he was steadily feeling problem will not only be
better and better. His general health had
improved-- just within two months of starting diagnosed completely but a
medication his weight had increased by 9 kg-- proper and lasting solution
from a measly 41 kg to 50 kg. He does have
some pain in his legs, which he hopes will (treatment) will also be
vanish with time. He said—“I have to get well
and I will get well.” provided by the doctors”
Anil religiously follows the doctor’s advice on all the precautions he has been asked to
take. He has got all his family members tested for TB and fortunately none of them
have the disease. At home he always spits in a cup of hot water and disposes off his
sputum by burying it in mud. He thinks that non vegetarian diet is more nutritious, so
he has started eating meat and eggs for more nourishment. But this he has to do
outside his house as his family is strictly vegetarian.
Anil has now become a TB advocate in his own way and guides patients to a
government facility for diagnosis and treatment.
His message for other TB patients: Please do not waste money on costly and
improper treatment in the private sector. A government hospital is the best place
where the problem will not only be diagnosed completely but a proper and lasting
solution (treatment) will also be provided by the doctors.
From private to PMDT: Journey of a

priest from TB to MDR-TB
The teenage son (studying in class 9) of a patient had come to take the daily dose of
MDR-TB medicine for his father who was paralyzed as he had suffered a brain

103
haemorrhage. He told me, “My father is a priest. We live in a village on the outskirts
of Delhi, where he was diagnosed with TB some years ago. He was put on treatment
under a private doctor but did not get cured. Then we moved to Gurgaon (city very
close to Delhi), where we shifted from one private doctor to another but to no avail.
We were even told that he does not have TB at all. Then one of our neighbours, who
works in this hospital (RBIPMT) advised us to come here. We got him tested and MDR-
TB was confirmed. His treatment started in May 2012. At that time he was very sick so
he was admitted in this hospital for 5 months. Now his TB is better but he is suffering
from many side effects and currently he is totally incapacitated because of a paralytic
stroke. So the doctors have permitted me to come here every day to carry his
medicines home. Today I brought his sputum sample also for follow up culture.”
“I wish if there was a vaccine to

control its spread…”
It was a humbling experience to meet Ajay, a middle aged graduate from
Muzzafarnagar, UP. Ajay was one of the rare cases of XDR-TB who had tested negative
(but still under treatment) and was recovering in the MDR-TB Ward of RB TB Hospital,
Delhi. He was very keen to share his experiences with the rest of the world.
Here is his story in his own words:

“I faced the problem for the first time in 2004 and then I took treatment for 9 months
from a private hospital. The doctor said that I was okay, but there was still no
improvement in my coughing. So I kept on taking medicines from here and there. I
would stay well for a while and then the cough would return. I became very sick
again in 2006. My friends and relatives advised me to go to Delhi. Here also I took
treatment for 9 months again in a private hospital, but I did not get much relief. Then
somebody told me about another doctor under whom I took medicines for 14 months.
But I was not improving. I felt that my death was imminent. Then an acquaintance
directed me to a doctor in Meerut and I was again on medication for 10 months. Never
did I miss my dose even for a single day. But by now I had lost all hope. I asked the
doctor as to how many more days I would be alive? Then on a well-wisher’s advice I
came to this hospital (RBIPMT). I clearly remember the date—it was 15th June 2012.
Dr Anuj Bhatnagar sent my sputum for testing at AIIMS. This was the first time in so
many years of medication that
somebody thought that sputum culture Dr Anuj Bhatnagar sent my
was necessary. The report came after sputum for testing at AIIMS.
three and a half months. Meanwhile I
had been admitted at LRS TB Hospital This was the first time in so
in Mehrauli. Then my report came in many years of medication that
September, 2012 and thereafter my somebody thought that sputum
treatment for XDR-TB began on 4th
October 2012. Since then I am culture was necessary.
admitted here and have been on this

104
treatment for over 4 months. I am feeling a lot better now.”
“The government of India is doing a commendable job by providing such good

facilities to TB patients in Delhi. I wish these amazing diagnostic and treatment
facilities are also made available in villages and far flung places where private doctors
are fleecing patients like. I can say from my personal experience that families are
being ruined financially while seeking treatment from private doctors, especially in
small towns and villages. I have seen people spending INR 5 lakhs from their pockets
on this without getting cured. The private sector only drains out money from our
pockets but has nothing to offer in return. People do not have much knowledge about
this disease which is spreading at an alarming rate as it is infectious. I wish there was
some vaccine to control its spread.”
Ajay’s message: I would like to spread the message that government is taking a lot of
initiative for TB care and control. But very often the money provided for this work is
not used properly, especially in a state like UP which has been riddled with corruption
scams. The media should also pay some more attention to this problem and spread
awareness in common public. If I stay alive I will become an advocate for TB control
and spread awareness about it in society.
Deserted by
his family,
divorced by
wife, PMDT
staffers
become his
new family…
Anirban Mukherjee is from
Kolkata. An only child, he is
32 years old and educated
till Class 10. He was already
married and had a daughter
when he was first diagnosed My sputum which was sent to DMC for
with TB in 2002. At that time testing (while I was working in
he was working as a marketing
manager in the mess of a
Dhanbad) came out positive again at
students’ hostel in Dhanbad. the end of 2011. So in 2012 I was back
He first took treatment in the in the same hospital with XDR-TB
private sector but then came

105
to the DOTS centre where he took Cat 1 medicines for 5 months. According to him, he
was told by the caregiver there that he was TB free so he discontinued the treatment.
Two months later he had a relapse. The cold, cough and fever returned.
“I came to K S Roy Hospital,
Kolkata in 2007 and was put on
Cat2 treatment. But even after 9
months of regular medication
my sputum was triple positive. So

I was declared Cat2 failure. My
sputum was sent to IRL for
culture and the result showed
that I had MDR-TB. I started MDR-
TB treatment under PMDT in
February 2010. I was on
treatment for 27 months, but at
the end of it my sputum again
tested positive. Eventually I got
cured, went back to my
community and back to my job in
Dhanbad. But again there was a relapse. My sputum which was sent to DMC for testing
(while I was working in Dhanbad) came out positive again at the end of 2011. So in
2012 I was back in the same hospital with XDR-TB.”
Meanwhile his wife had divorced him in 2008 because of his TB and taken her away
her daughter with her. His employer turned him out of his job and his landlord threw
him out of his house. His mother too refused to take him back. He was now homeless
and a destitute. So he returned to the same hospital and the Superintendent at KS
Roy Hospital admitted him on compassionate grounds. He has been there at this
centre since then—for over 1 year and 2 months. The sister in charge of the MDR-TB
ward told that he would remain here as long as his treatment continues.
No one else in his family has ever had TB. He never smoked nor ate gutkha/paan
masala but used to take alcohol occasionally.
Now his own people have left him. Abandoned by family, it is strangers who are taking
care of him and attending on him. Yet there was a glow of happiness and gratitude on
Anirban’s face. He said, “I am very happy staying in the ward here. The sisters
(nurses) are doing much more than my family could ever have done. They are very
dedicated in their work. All the responsibilities which should have been taken by my
family members are being done by the sisters the care givers and doctors of this
hospital. They are helping me in whatever way they can. They are closest to my
heart. I am too happy to stay in the hospital. I have no feelings for my real family, but
I am very grateful to all the hospital staff.”

106
Anirban’s message to other TB patients: We should
have faith in the sisters and doctors, and other
healthcare givers and listen to them and follow all the
instructions given by them on infection control. We
should also strictly follow the treatment schedule and
then we will be cured.
With family’s support,

he is determined to
complete the treatment
Abdul comes from 24 Paraganas district of West Bengal, which is located very close to
Kolkata. Although he is illiterate, Abdul is an expert in zari embroidery work. Married
in 2010, Abdul was leading a happy life with his parents, wife and two children (a son
and a daughter) when he came down with persistent cough, fever and cold in June
2012. He went to Baruipur district hospital and they gave him some medicines. When
his condition did not improve they did an X-Ray and also tested his sputum. The test
results came in 5 days and confirmed TB. Abdul was devastated. He was just 26 years
old and no one else in his family had ever had the dreaded disease.

107
I am determined to
complete my
But he was not given medicines from there as the medication and not
hospital did not fall in the same district as his home
town. He was referred to a TB centre close to his place leave in between. My
of residence and there his medicines started. He was family members are
put on CAT 1 treatment. with me and they have
“Every alternate day (Monday, Wednesday and Friday) I no stigma. My brothers
would cycle to the drug dispensing centre situated at live separately. I will
the village panchayat , which was not very far from my pay full attention to all
home, and eat my medicine there. I ate the medicines
for 17 days. Then I had severe vomiting and could not the instructions about
even digest my medicines—I would vomit them out. So infection control and
I went to the main TB centre which directly gave other things which the
medicines. They stopped my medicines and gave me
some other combination of 4 medicines. These nurses will tell me
medicines helped me and could regain
some of my lost strength. My cough also
vanished. My appetite returned. I felt
much better. Then they asked me to be
on CAT 1 again. They said if it suits you
then you will get well quickly. They
gave me two strips of medicines. But
after taking two doses, I started
vomiting again. So they decided to
change my medication. They also sent
my sputum for culture and when the
report came I was told that there was
some problem and I would have to be
admitted in Jadavpur hospital (KS Roy
Hospital). So I came here yesterday
(23rd January, 2013) and my medication
for MDR-TB will begin now. Today
morning I was having a lot of shivering.
The doctors have said that they will
relieve me after 7 days.
I am determined to complete my medication and not leave in between. My family

members are with me and they have no stigma. My brothers live separately. I will pay
full attention to all the instructions about infection control and other things which the
nurses will tell me.”
(The sister-in-charge said that Abdul was diagnosed with MDR-TB last year in 2012.
He was sent here recently and is now on CAT 4 treatment).
Abdul admitted to being a smoker but then he left smoking three years ago, when he
got married, at the insistence of his wife. He said that he was very happy with the

108
kind and loving attitude of the nursing staff of the hospital. “They are all very
affectionate and always ask about my wellbeing. I feel fitter here than at home.”
His message to other TB patients: All patients should practice infection control
methods and use masks. This I tell my family members also and ask them to keep
away from me. My parents are not following strict infection control protocol at
home. But I always use a mask and cover my mouth when I am coughing. Please pray
for my recovery.
Aspiring for size zero, acquires TB…

17 years old Rehana is a petit and very soft spoken 17 years old girl studying in Class
11. She lives with her parents (her father has a shop selling readymade garments),
three brothers and a sister in Baratalla in Kolkata. Like other girls of her age she was
very calorie conscious; went on a strict diet control to remain extra slim at the cost of
her general body immunity, which went down too along with her weight.
She fell ill around 20th August 2012 with severe cough. She was shown to a private
doctor and her treatment started on 29th August. She ate the medicines for whatever
period of time they were prescribed. (Neither she nor her mother were able to recall
the exact duration of the
treatment). She had to take
over 80 injections as well. To
make matters worse, her liver
was also affected and she got
an attack of jaundice. She
continued with the same
doctor but her condition did
not improve. She would feel
nauseas and vomit all the
time. Eventually the doctor
said that as the medicines
were not improving her
condition, she should be taken
to a government hospital. Her
parents, in the absence of any
proper knowledge about TB,
took her to a government
facility in Baratalla where her sputum tested negative. From there they were directed
to Aamtala hospital where the sputum test result was positive for MDR-TB. She was
then sent to K S Roy Hospital in Jadavpur.

109
I have another 12 year old
daughter who is looking after
When I met her in the MDR-TB ward of the the house and has stopped
hospital on January 24, 2013 I found her a going to school as there is no
very pale and frail looking girl. She had
already spent two weeks in the hospital and one else to do the family
her medication had begun just 5 days ago. chores. I am staying here in
The nurse told us that as her condition had the hospital day and night. No
deteriorated after admission, she was being
allowed to stay in the ward till she felt one else in our family has
better, although normally MDR-TB patients ever had TB
are hospitalized for not more than 7 days for
treatment initiation. Rehana said that she
was already feeling a lot better than before. Some cough was still there but her
appetite had returned. Her mother, who was attending on her, complained that,
“Rehana has always been a poor eater and never cared for her health. She started
dieting when she had put on some weight. So she started eating very little. Maybe this
is one of the reasons for her to get the disease as her body immunity must have
become low. She never listened to me. My house is in a mess. I have another 12 year
old daughter who is looking after the house and has stopped going to school as there
is no one else to do the family chores. I am staying here in the hospital day and night.
No one else in our family has ever had TB.”
I wished Rehana good luck and told her that she should go back to studies once she is
cured, and look after herself well and eat well. That brought a smile to her pale face
and she promised to do so.
Instead of heralding social change, she

turned positive for TB...
21 years old Neelam Das is a graduate and aspires to work in the police
or the railway department, or else become a teacher as teachers can
bring a positive change in the lives of students. Her father works in the
blood bank of SSKM Hospital, more commonly known as Presidency
General Hospital or PG Hospital Kolkata and the family lives in the PG
Quarters inside the hospital campus.
Neelam’s problems began in January 2012 when she had a slight cough
accompanied with a persistent high fever. The doctor at PG Hospital

110
said that there was accumulation of cough in the chest and medicines would make it
okay. She completed a 9 month course of ATT despite undergoing severe nausea and
vomiting during the course of treatment. But at the end of the treatment there was
no relief. So her sputum was sent for culture on 8th October 2012 and the culture
report came after three months on 8th January, 2013, confirming diagnosis of MDR-
TB. She was admitted in KS Roy Hospital, Kolkata on 10th January for pre-treatment
evaluation and initiation of MDR-TB treatment. Her medication started on 19th
January and she was to be discharged on 28th—4 days after I met her on 24th January.
No one else in Neelam’s family, including her two younger brothers, has ever suffered
from TB. But all of them, including her college friends have been very cooperative
and stood by her side during her illness. Neelam’s mother, however, who was
attending on her, complained that, “Neelam is a poor eater and that could be the

111
Neelam told me that
she loves to read and
reason for low immunity level of body. She would go on
an empty stomach to college. Now since the day she study. Even earlier,
has started eating medicines she does not eat as she is while on treatment,
scared that she may vomit out the medicines. The she managed to appear
sisters have asked her to eat well and drink 6 litres of
water every day.” for her exams despite
high fever. She is
Neelam said that she felt nauseous after taking determined to pursue
medicines in the morning but felt better by evening.
However she promised that once she goes home she her post-graduation
would follow all the instructions given by the nurses once she is cured.
regarding diet and infection control. She was very
appreciative of the nursing staff of the hospital and said that they were changing the
lives of patients for better.
Neelam told me that she loves to read and study. Even earlier, while on treatment,
she managed to appear for her exams despite high fever. She is determined to pursue
her post-graduation once she is cured.
(The nurse in the ward said that for some unknown reasons the incidence of TB is
very high in the PG Quarters area which she called a den of tuberculosis.)
Surviving bravely despite TB,

diabetes, other health concerns…
Krishna Dalal is a housewife and has studied till Class 10.
Her husband works as a peon in Calcutta University. She
has a 14 years old son and a 10 years old daughter.
Nobody else in the family has TB—they have all been
tested for TB and are free from the disease.
“I was diagnosed for the first time in 2007 with early

symptoms of fever and cough. I then took treatment
from a private doctor for one year and got cured and
then my medication stopped. I have also had diabetes
since 2006. I was okay for two years, but in 2010 my
fever and cough reappeared. This time I went to a DOTS
clinic and then I took medicines from there for 8 months
and was okay. But my culture report was again and again
coming incorrect due to some problem or the other or
my bad luck. Finally my medication for MDR-TB started
in April 2012 and it has since been 9 months that I am
taking those medicines. There were several problems
related to my TB diagnosis, either there was some

112
There were several
problem in quality of sputum or sending of
sputum, or in the diagnosis. I really do not problems related to
know. But now (February, 2013) my report has my TB diagnosis, either
turned negative for MDR-TB. I have also there was some
started feeling much better. Earlier I was
totally unable to do my domestic chores but problem in quality of
now I have started with some small work at sputum or sending of
home. I still have minor problems of side sputum, or in the
effects of medicines but they are less than
before.” diagnosis
“I have been asked by the doctor at Calcutta

Rescue Centre to wear a mask whenever I open
my mouth to speak or else cover my mouth with a handkerchief when I go out, as a
preventive measure for infection control. I have been coming every day to Calcutta
Rescue Centre to take my medicines for the past 9 months and the place is not so far
from my home. I have taken injections as well for 6 months. When my report came
negative, injections and pyrazinamide were stopped but other medication is
continuing. I have been told that the treatment will last for 2 years. This centre is
very good and the staff here is very understanding and caring.”
Krishna’s message to other TB patients: Cure for this disease is possible. However one
needs to have patience, and although one might face many problems in the beginning
by way of side effects of medicines, but in the end all will be fine. Slowly the patient
recovers from the disease if he or she takes proper and continuous medication as
prescribed. So one must have patience and take medicines regularly.
(Babita, the nurse in charge at Calcutta Rescue Centre, Kolkata told:--Krishna

is a patient from our Ward 3. Hers is a sad story as twice she took TB treatment
in private and twice Cat 2 treatment in the government set up before her MDR-
TB was diagnosed. She is very faithful towards taking medicine. Her family and
she are educated and the family is very supportive. In 2006 she took Cat 1
medicine from a private doctor for 8 months. When she came to our centre I
saw her prescription and found that she was neither given proper medicines nor
the proper doses. Her body weight was nearly 80 kg but rifampicin and INH
dose given was not appropriate to this weight. I suspected that she must have
become drug resistant. She was very upset that time. But then she took Cat 2
medicines from our centre and became negative. I was very happy and thought
that my earlier presumption about MDR-TB was wrong. But after one year she
returned with the same problem. So I requested the government doctor to send
her sputum for culture. But at that time there were problems of sputum cups
not being available in government set up, so there was more delay. Then I
requested my DTO Dr Singh and with his help her sputum was sent for culture
and she tested positive for MDR-TB. Only then could she be put on proper
treatment and now she has tested negative and is in the continuation phase.)

113
He never thought he can ever get TB!
It has been two and a half years (from
2010) that Mukesh has been staying in the
MDR-TB indoor ward of KS Roy Hospital,
Kolkata. About 5 years ago he suffered from
stomach ache, body ache and loss of
appetite. He did not realize even the
wildest of his dreams that this could be due
to TB. Even his private doctor treated him
for stomach problem. But there was no
relief and his health kept on deteriorating.
He became very weak and now there was
persistent cough accompanied with high
fever. So he was advised to get tested in
the medical college. His sputum
examination revealed that he was suffering
from TB. So he was put on Cat1 treatment
for 6 months, at the end of which his report
was still positive. Then with support from
Calcutta Rescue Centre, he was put on Cat2
treatment at KS Roy Hospital for another 6
months, at the end of which his sputum still
tested positive. The culture report
confirmed MDR-TB. So he was told that he
would have to get admitted in the hospital
and would be given medicines there. When
I spoke to him in February 2013, he had
been on MDR-TB treatment for nearly 23
months and his treatment was about to get I faced a lot of difficulties due to
over in March 2013. His culture reports were severe side effects of medicines.
consistently coming out to be negative and
only the final culture report was awaited.
My whole body would feel as if
on fire; there was severe body
Mukesh is 34 years old and is a resident of pain and I would feel tired and
Howrah in Kolkata. He used to give private
tuitions to students from nursery to class 4. I
weak, as if there was no energy
have my mother, a brother and brother’s left in my body. I feel better now
wife in the family apart from me. He is a
non-smoker and nobody else in his family
(consisting of his mother, brother and brother’s wife) is suffering from TB. His family
has stood by him and they come to meet him in the hospital.
Mukesh said that, “I faced a lot of difficulties due to severe side effects of medicines.
My whole body would feel as if on fire; there was severe body pain and I would feel

114
tired and weak, as if there was no energy left in my body. I feel better now but still
do not feel quite up to the mark.”
Mukesh’s message to other TB patients: Never miss any dose of drug and take the
medicines properly if you want to get cured.
(Calcutta Rescue Centre has a tie up with KS Roy Hospital. They have 2 staff
members who visit K S Roy Hospital every Friday and cater to all the patients of
Calcutta Rescue Centre admitted there and also provide medicines to some other
patients admitted there—those who are outside the DOTS plus programme).
Misdiagnosed as typhoid but had TB…

This is the story of Nusrat--I am 19 years
of age and I have in my family my mother,
father, 4 brothers and one younger sister.
My father is a labourer.
This disease happened to me in 2009 when

I was in class 7. I was then diagnosed with
typhoid. But despite taking treatment for
it the high fever continued. So I went for a
complete checkup and was diagnosed with
TB. I took treatment for 9 months from a
private doctor. But there was no
improvement in my condition—rather it
worsened. I vomited a lot, had high fever
and lost weight. One day I spitted out
blood from mouth which really scared me
and I stopped eating the medicines. My
mother took me to our village in Amethi
near Lucknow during school vacations. But
there my condition became worse. I was
so weak that I could not get up from bed.
I returned to Kolkata and showed myself
at Calcutta Rescue Centre. Thus I was put
on Cat-2 treatment for TB in 2010. I had to take injections too. But when the
treatment was completed I again fell ill. So I was on Cat-2 regimen again in 2011. Still
I did not improve and my reports came out positive. Then my sputum was finally sent
for culture and the report came after 4 months and I was diagnosed with MDR-TB. So
since 16th February 2012 I have been taking medicines for MDR-TB from Calcutta
Rescue Centre.
Now I am feeling much better and I walk to this centre alone every day after
attending school to take my medicines. I had to discontinue my studies because of my

115
illness and lost two years. But now on the insistence of Babita didi I have recently
taken admission in class 9. I am really happy to be back to my friends and teachers.
The doctor has asked me to take some preventive measures at home which I follow
religiously-- I have my separate bed at home; I have separate utensils to eat my food
and a separate water bottle. I do not eat with my siblings. Even in school I keep a
handkerchief on my mouth while talking or sneezing.
Nusrat’s message to other TB patients: I want to tell all other people that they must
take proper medicines and on time and should never miss even a single dose. They
should adhere to their treatment and complete it and not leave it in between.
(Babita, the nurse in charge at Calcutta Rescue Centre, Kolkata told—Nusrat

took medicines from some private doctor for about a year in 2009 and came to
Calcutta Rescue in July 2010 for Cat2 treatment. As her body weight was very
low (about 22kg) she was given pediatric doses and also given streptomycin
injections. Thereafter her reports came negative and she was cured by March
2011. But just one month later, on 27th April 2011, she came back with the
same problems (low grade fever and cough). Her sputum tested positive again.
Then she was put on Cat2 for relapse. But by now she had already taken Cat 2
treatment twice—once in private and then in government. Yet she was not
responding. So finally her sputum was sent to the government hospital for
culture and after 4 months the report confirmed MDR-TB and she was then put
on Cat4 treatment. As per our rules she was admitted it K S Roy Hospital for
fifteen days for observation and took medicines from there. Thereafter she has
been on MDR-TB treatment for over a year now (it was February 2013). The
results of the culture and smear are now coming negative and she is slowly
getting better. She is now in the continuation phase and comes here alone
every day to take her medicines. Her mother used to come with her when she
was getting injections, but now she comes alone. Sometime ago she developed
some psychological problems-- sitting all day at home with nobody talking to
her. So I advised her family to send her to school again as she was now
infection free. She thought that she had become overage for her class. But
then I counseled her and her family and told her that age is never a bar for
studies. So she rejoined her school in January, 2013 and is now very happy
going to school and talking to her friends. Her school does not know about her
TB status. From the school she comes here to take her medicines. Earlier she
would cry all the time but now she is back to being a normal and happy girl).
When I spoke to Nusrat in February 2013, she sounded very optimistic and full of
hope. Going back to school had perhaps worked wonders for her mental health. She
was happy to be with her friends once again and no longer treated as an outcast.
There was no trace of dejection and depression in her talks. In fact she promised to
meet me on her next visit to her grandparents’ house in Amethi.

116
TB is not only a poor person’s disease!
I met Bhaskar in the MDR-TB OPD of
Lok Nayak Hospital, New Delhi, on an
early February morning in 2013. He
seemed to be well educated and spoke
in fluent English. He admitted to being
a smoker in the past but had since
given up smoking. But he was not
convinced that smoking could have
been a reason for his getting afflicted
with TB. He had got his wife and only
child tested for TB in July 2012 and
their report was negative. He said he
would send them for testing again this summer.
Bhaskar had the usual symptoms of cough and fever in 2012 when he went to a private
doctor who diagnosed him with TB on the basis of a chest X-Ray. The doctor said that
it would take him 8-9 months to get cured. So Bhaskar did not take his disease
seriously and started his medication under his doctor. He never thought it necessary
to go to a government centre. But even after completing 6 months of treatment
there was no visible improvement in his condition. Alarmed at this he showed himself
at this hospital where he was diagnosed with MDR-TB. He had been on MDR-TB
treatment at Lok Nayak Hospital since April 2012.
Bhaskar has faced lot many problems during the course of his treatment. Earlier he
suffered from excessive weight loss and faced other problems too like stomach ache,
vomiting, and nausea. When I met him he sounded very dejected, especially because
of the toxic side effects of medicines. He lamented, “If there is something which I
cannot just digest is why these 2 painful years of medicines—were the medicines not
good enough? Right now also I am suffering from many side effects of medicines. I feel
very restless at night after taking my medicines. I feel okay in the latter part of the
day, but I cannot sleep properly at night, and next morning I have to go to my job. So
it becomes very tiring for me, although I am a bit relaxed than before. Earlier, when
I was taking painful injections, it was worse. Whatever anyone told me to do in the
last 2 years I have done that. I only hope that now I will get better.”
“I am taking all precautions as told by the doctors here. I have been told to use a
separate room and toilet. In the initial period I used to wear a mask but not now. As
much as I can I take all precautions. I am ready to do things that are required at the
moment even if by little force as I really want to get cured.”
“I do not know if smoking was responsible for my TB. If everyone stops smoking then
India will become the poorest country of the world due to loss of revenue. But
anyways, I have quit smoking and it is okay with me. And I am not tempted to take to

117
tobacco again.” [Editor’s note: As per a study conducted by Indian Council of Medical
Research (ICMR), India loses more money on treating tobacco related causes than the
revenue from tobacco industry.]
Going to college with treatment

alongside...
Rafiq belongs to Haryana and is
currently studying in the second
year of B.A. in Jamia Millia
University, Delhi. His father is a
driver and he is the second eldest
amongst 9 siblings—7 brothers
and 2 sisters.
He probably contracted TB
probably 3 years ago in 2010
when he was studying at Nadwa
College in Lucknow. It started
with cold and cough. He showed
himself in a government hospital
in Lucknow and was diagnosed
with TB. So he went back home
and began his treatment in some government hospital in Haryana. But as he was not
getting well he thought the treatment did not suit him, and he left it midway without
completing the 6 month regimen. He then turned to a private doctor and was under
his treatment for 2 years, spending INR 3000 per month on his medicines. But he was
not getting any better. As he was now living in Delhi, he eventually showed himself at
Lok Nayak Hospital where he was diagnosed with MDR-TB. His medication for MDR-TB
began on 26th September, 2012 and when I met him in February 2013 he was in the
fifth month of his treatment.
Rafiq said that, “I am feeling much better with the treatment provided here, although
after taking injections and medicines I do feel restless at times. This centre opens at
9 am, so I come here to take the medicines and injections and then go to college, as
my classes start from 10 am. I have taken a room here in Delhi and stay alone. I do
not cook my own food but eat in a hotel as I have to take proper diet to bear the side
effects of drugs. I do not take anything like cigarettes or alcohol. The doctor here has
not asked me to eat anything in particular, but people have advised me to eat more
non vegetarian food as it gives more energy. No other person in my family has TB and
none of them have been tested for this disease. I have mostly stayed away from
home, so it is unlikely that they will get the infection from me.”

118
After a whirlwind search for cure,
found relief at PMDT site in Delhi
In the MDR-TB OPD of Lok Nayak TB Hospital I came across the harried father of a 19
years old girl who had reached Delhi that very morning of February, 2013 and then
had immediately come to the hospital. His daughter’s case had been referred from
SGPGI Lucknow to this hospital.
His heart rending tale of woes was a living testimony of a callous and irresponsible
private sector and a careless government sector. He was carrying a fat load of her
past prescriptions gathered as the hapless father went from one doctor to another;
from one treatment to another; while her TB got worse by the day.
The duo belonged to MP where the girl first took ill in September 2010. She had
constant fever and cough. Her sputum was tested and X-Ray was also taken. She took
treatment under a private doctor for 8 months. She was okay for 4 months and then
the problems recurred. This time the father took her to a government hospital in
Chhatarpur where she was again put on a 9 months regimen. But the medicines had to

119
be bought from the private market as the government doctor was treating her as a
private patient (the father said that this was quite the norm at his native place. Here
she was given kanamycin 750 mg injections for 3 months on alternate days, but not
streptomycin. Yet there was no relief. For two years she was treated in MP but did
not improve even one bit. The patient as well her parents were all fed up with the
long drawn out treatment without any visible relief. Then on a relative’s advice she
was shown in SGPGI Lucknow in June 2012. There she was given 60 streptomycin
injections. Kanamycin was also started again. As per her SGPGI prescriptions she had
been on 2nd line drugs since 1st November 2012.
For the last three months she had had no fever or cough and for the first time after
2010 she was feeling better. But probably the right treatment came to her a bit too
late-- one of her lungs had been damaged almost completely and she was also
suffering from a total loss of appetite. So she had been referred to this hospital.
(The attending doctor in the OPD went through all her past prescriptions very
rigorously and concluded that she although she had been given kanamycin
earlier by the doctor in MP, but other second line drugs were not given. So she
developed resistance. The SGPGI doctors followed the protocol. Their tests
revealed MDR-TB and they treated her accordingly. But they were not able to
get the desired response. So now they doubted that she is resistant to second
line drugs also—which means that it could be a case of XDR-TB. The doctor also
said that as per the rules, if XDR-TB is diagnosed, this hospital would not be
able to provide free drugs to this outstation patient, although they would give
other support. Drugs from the private market would cost around INR 5 lakhs,
for the whole course of treatment. However, he said that they we would try to
register her under some project or the other which go on in RB TB Hospital and
LRS Hospital, and if she is lucky she would get free treatment under them. But
there was no guarantee of this).
Blew up more than cost of MDR-TB

treatment in private sector…
I have my mother, an elder brother and 3 sisters in
my family. No other person is suffering from TB in my
family. 21 years old Saral belongs to Bihar. He
started facing problems 4 years ago when he was
studying in school. He would feel very weak and also
coughed a lot. But he ignored these tell-tale signs
and gradually his health worsened. Then he went to
Mumbai to visit his cousins where he showed himself
to a private doctor who told him that a lot of phlegm
had accumulated in the chest. He prescribed
medicines to be taken for two months and also

120
advised bed rest. After taking medicines for 1 week Saral returned to Bihar. His
problems aggravated there and so again he went to a private doctor there. He was
under this treatment for nearly 8 months. In the beginning he did get some relief, but
then again the problems recurred (at this stage the patient was feeling it difficult to
speak, so I spoke to his brother outside the ward).
Brother of the patient –“Initially we spent a lot of money (over INR two lakhs) on
private doctors’ treatment in Darbhanga, Bihar, with no positive outcomes. Then
some people of the village told us about this LRS Institute and so we brought him here
as already a person from our own village had taken treatment here and got well. Saral
has now been on treatment at LRS Institute for the past one and a half years and
since the time he is taking treatment he is feeling much better. The patient had
started working also as he felt better. But then again his condition started worsening
and so he was admitted here a few days ago. The doctor has said that they have now
replaced the old drugs with more powerful ones. He is facing some problems in
urination and so he will remain here for another 2-3 days and would be relieved after
that and the medicine would continue till the doctor says. By God’s grace all is going
well now. Now he has the confidence that he will get well soon but had he known
about this place earlier then treatment would have started early too. In the villages,
those persons who know even a little about TB, apply their own knowledge and ask to
shift the patient to so or so place.”
The brother and mother of Saral were all praises for the doctors and the staff who are
very efficient and nice. They said that he was just a bag of bones when he came to
this hospital and now his health has improved because of the good care that he has
been given.
The advice of patient’s brother to other people: it is important to meet the right
doctor and contact qualified persons for seeking proper treatment. They should not
listen to every person who has some advice to offer. Instead they should apply their
own sense, otherwise nothing other than simple time waste would come in hand.
The nurse informed that perhaps the family is not realizing that XDR-TB is very
difficult to treat. Of course right now they are very happy that since they brought
the patient here, he has improved tremendously.
Deserted by husband’s family, in her

father’s care: she needs an oxygen
cylinder to breathe…
I met 18 years old Rinki in Febraury 2013 in the Model MDR-TB Ward 8 of LRS Institute,
Delhi. (There are 24 such state of the art wards in this hospital which are one of their
kind in India and are equipped with the most advanced infection control gadgets). She

121
was breathing through an oxygen cylinder
fitted in her ward. Rinki had completed 18
months of her MDR-TB treatment at LRS
Institute in February 2013. She had tested
negative and was in the continuation phase
of medication. However TB had taken its
toll by way of damaging her lungs, making
her dependent on an oxygen cylinder to
breathe. When she does not use the
oxygen cylinder she suffers from intense
body pain and feels very uncomfortable as
she gasps for breath. The oxygen cylinder
seems to have become her lifeline now as
TB has ravaged her lungs.
Rinki comes from a very poor family and

could study till class 6 only. She was
married at a very young age, but was
thrown out of her in-laws house when she
contracted TB. A native of Bihar, Rinki
lives with her parents and brother in a
slum of Delhi. Her brother is a roadside
vendor and the sole bread winner. Her
father, who stays with her in the hospital
from 4 pm till 10am, is a patient of
hypertension. He used to ply a rickshaw
but now his health does not permit him to
do that. Rinki’s mother is also sick with many gastric ailments.
Rinki was put on TB treatment in 2009 when she was 14 years old. She completed 6
months therapy at LRS Institute and then tested negative. She remained okay for 6
months. Meanwhile she was married off by her parents (despite being so young and
recuperating from a debilitating disease). But after some time her problem of cough
and fever recurred and she was ill again. This time she was put on a 10 month
treatment course. But her in-laws did not pay much attention and there was
carelessness in taking medicines regularly. This disruption in treatment further
deteriorated her condition. She was admitted in LRS Institute for 4 months, and then
she became better and was discharged. After 1 month she was sick again. This whole
cycle repeated once again. She was eventually diagnosed with MDR-TB one and half
years ago. Since then she has been on MDR-TB treatment for the last 18 months. Now
she is negative and in the continuation phase of treatment. But her lungs are
damaged, so she needs an oxygen cylinder to breathe.
When she is out of the hospital she needs a cylinder which costs 300 per day which
her poor parents can ill afford. So she just keeps flitting in and out of the hospital
where mercifully she is able to get free admittance. But the hospital administration

122
has its own logistic problems. They find it difficult to keep a patient in the ward for
an indefinite period of time, although they are doing their best to help her.
Rinki repeatedly told me that she felt very guilty for putting her parents to so much
of trouble because of her seemingly never ending illness. No one else has TB in her
family. Her father has resigned himself to his fate. He said that, “Perhaps taking TB
medicine is like spraying insecticide in the body. If any germ remains, TB recurs—else
why did my daughter get it over and over again?”
The Sister-in-charge of the ward said that although Rinki had become negative, but as
soon as she goes home after getting discharged she starts facing problems of oxygen
shortage and then she returns as they are too poor to afford an oxygen cylinder
continuously. Her condition will improve gradually but for that she regularly needs
nutritious and protein rich diet and fresh fruits which the family is perhaps unable to
afford. Once her MDR-TB medication is over she would be prescribed some lung
exercises to improve her lung condition.
MDR-TB survivor also bravely battles

against a rare genetic disease
She is a brave woman who is a living example of
the oft-quoted adage - 'When the going gets
tough, the tough gets going...' Read her story in
her own words -a real-life experience, full of grit,
courage and determination, to continue living and
spreading light despite seemingly insurmountable
challenges.
“I have been suffering from a rare genetic

disorder called Von Hippel Lindau (VHL) Syndrome
since my early childhood. This disorder results in
excess blood flow due to hypoxia inducible factor
(HIF) resulting in repeated tumor growths in
different organs of my body. VHL is a lifetime
disease. Patients need to be constantly checked
and treated/operated for the tumors and cysts
that develop at various sites in the central
nervous system and visceral organs throughout
their lifetime. Because of the complexities
associated with management of the various types
of tumours in this disease, treatment is
multidisciplinary.

123
Very often timely aggressive surgical intervention is the only cure. As a VHL liver
124
transplant patient, I have undergone and 9 surgeries one brain tumor removal, besides
grappling with MDR-TB which was diagnosed in 2010. I developed MDR-TB.
Manifestation of my latent TB happened under immune compromised situation,
confirmed by a radiological conference facilitated by Dr Randeep Guleria at All India
Institute of Medical Sciences (AIIMS). I developed pulmonary, bone and lymph
involvement, to such an extent that it gnaws my bones and I walk with help of a four-
toed stick.
The latest CT study of my chest reveals multiple nodules, many of them calcified, and
also fibroatelectatic lesions in both lung fields. The appearance is consistent with
chronic tubercular lesions. Compared with previous CT chest studies of 2010 and
2011, there is relative regression of the lung parenchymal lesions. CT study of head
reveals an enhancement in right cavernous sinus as well as right convexity. In view of
the size of lesion and my age (33years), radiosurgery-- cyber knife—has been
suggested by doctors at Medanta Medicity Hospital.
My father’s sudden demise in 2010 has left me and my mother in a penniless situation,
and my younger brother is now the sole earning member of the family. We are left
with nothing to carry on my treatment. We are homeless, being evicted by landlords
as and when they feel I am contagious because of my TB. At present I am living in a
crummy rented place with narrow stairs, without ventilation, which is having adverse
effects on my lung lesions, bone TB and hypoxia related VHL tumours which are
growing fast. Initial support was provided by my friends and well-wishers but they and
my brother can no longer pull the economy of my diseases together.”
Note: Presently as of 1 May 2013, she is struggling to raise resources enough to meet
her healthcare financial expenses for a range of conditions.
We are homeless, being evicted by landlords as and

when they feel I am contagious because of my TB. At
present I am living in a crummy rented place with
narrow stairs, without ventilation, which is having
adverse effects on my lung lesions, bone TB and
hypoxia related VHL tumours which are growing fast

125
We can stop TB: With a little bit of
love and a pinch of will power...
This is the story of Munnawar Khan Pathan,
a 49 years auto rickshaw driver of
Ahmedabad who has successfully battled
multidrug-resistant TB (MDR-TB) through
his will power and the loving efforts of his
doctor Dr R M Leuva. His is an example of
how a caring and committed doctor can
help an MDR-TB patient to complete the
two years long ordeal of toxic medication
and get fully cured. Last month, in
February 2013, I was in Ahmedabad,
talking to a healthy and beaming
Munnawar, little realising that he had been
through terrible times before eventually
conquering MDR-TB. Although I had spoken
to many patients afflicted with this serious
form of the disease, this was the first time
I was face to face with a cured MDR-TB
patient.
Munawwar’s ordeal began in 2006 when he was diagnosed with TB for the first time.
“At that time I used to eat gutkha, smoke cigarettes and bidi. Firstly I showed myself
in the Ahmedabad Municipality TB Centre but my condition did not improve. I was also
not very regular with my treatment and would go on and off medicines. In 2008 I
sought treatment in the private sector, but my condition deteriorated. But God is
great. He came to me in the garb of Leuva Sahib (who had treated me earlier). Dr
Leuva stopped me one day while I was driving my auto rickshaw and asked me to
meet him in the hospital as he wanted to talk to me. I felt very happy and proud that
such a reputed doctor had called me personally. So I went to him and he gave me the
confidence that I will be cured of my TB. My medicines for MDR-TB started in October
2009. On Dr Leuva’s insistence I gave up smoking bidi, cigarette, and eating gutkha,
and started taking my medicines religiously. I had to stay in the hospital for 19 days. I
had to take 13 tablets every day. I always ate them together in one go and also took
injections for 6 months. While on treatment I once fractured my leg and was admitted
to a nearby hospital for about 4 months. During that time Leuva sahib would come
personally to give me injections. So my treatment was not disrupted.”
“Now I have been completely cured since 2011. I owe all my good health to Dr Leuva.
It is only because of him that I am standing perfectly well on my feet today along with

126
my family members and driving my vehicle as well. I am so indebted to him that even
if would call me at midnight I would go readily to offer any help I can.”
Explained Dr Leuva, “Munawwar had been a Cat 1 treatment failure earlier and hence
a presumptive MDR-TB patient. I was there in the same government hospital where
Munawwar had sought treatment earlier and I knew he had been defaulting on
treatment. At that time there was no government programme to treat MDR-TB. So he
had shifted to the private sector and was on kanamycin under the private doctors.
When government programme for MDR-TB treatment started in Gujarat, I
remembered him and thought to bring him to the government clinic so that he could
get free treatment. I knew that he sometimes came to this particular spot. So I would
stand there every day waiting for him as I did not have his home address. I finally
found him one day, and asked him to come to the hospital. Initially he did not want to
take the treatment as he had no faith in the government programme. Moreover it
took 4 months for the test report to come and confirm the diagnosis of MDR-TB. Even
after the diagnosis it took a lot of effort to make him agree to begin treatment. While
on treatment he once fractured his leg and was confined to bed. I ensured to give him
his daily dose of injections during this period by doing home visits as a special case.
Today he is standing in front of you—fit and fine.”
Munawwar has since become a TB advocate and his mission is to spread awareness
about TB in the general population. I found his auto rickshaw decorated with several
hoardings with informative messages on TB and advertisements about the government
TB programme. Now whenever Munnawar sees any patient suffering from TB then he
goes to the patient and tells him/ her that once he also had the same problem and
now he is doing well after taking treatment. He always keeps the hospital card in his
pocket to show others how he got well and from where he took his treatment. He has
brought many patients to the programme who had either left treatment midway or
were hesitant to begin treatment.
“If I find any person suffering from TB, I try to share their suffering and problem and
bring them free of cost in my auto to this DOTS centre. This is the only way I can show
my gratitude for all that Leuva sahib did for me. I have brought many patients here.
Sometimes the patient gets angry on me but I do not mind it as deep inside my heart I
“If I find any person suffering from TB, I try to share their
suffering and problem and bring them free of cost in my auto to
this DOTS centre. This is the only way I can show my gratitude for
all that Leuva sahib did for me. I have brought many patients
here. Sometimes the patient gets angry on me but I do not mind it
as deep inside my heart I know how painful the whole process is.
My work is only to make them understand because a person gets
irritated while on treatment as I have gone through all this myself

127
know how painful the whole process is. My work is only to make them understand
because a person gets irritated while on treatment as I have gone through all this
myself. I also tell the people suffering from TB that there is no need to seek such
costly treatment in the private sector. I too wasted so much of my money in taking
medicine from the private doctors but it did no good,” confided Munawwar.
Dr Nevin Wilson, Regional Director of the South-East Asia Office, International Union
Against Tuberculosis And Lung Disease (The Union), rightly believes that, “Patients
and communities are central to TB control. Patients must be empowered to act
positively for their own good through full knowledge of their illness and the risks
involved in not completing treatment. They also require support to complete a full
course of treatment. This support has to be continuous and includes the regular
provision of medication; counselling to understand the side effects of medication and
the need to persist with complete treatment.”
Seeing is believing, and, coming across a grateful patient advocate and a devoted (yet
very humble) doctor, restored my faith in our combined ability to control the menace
of all forms of TB—sensitive and resistant. There are many more such healthcare
professionals and advocates doing inspiring work in our midst. We just need to help
them multiply their efforts, in whatever way we can, to fulfill our mission of a TB free
world.

128
The Patients’ Charter for Tuberculosis Care (the Charter) outlines the rights and
responsibilities of people with tuberculosis (TB). It empowers people with the disease and
their communities through knowledge of the disease. Initiated and developed by patients
from around the world, the Charter makes the relationship with health-care providers a
mutually beneficial one.
The Charter sets out the ways in which patients, communities, health-care providers, both
private and public, and governments can work together as partners in a positive and open
relationship, to improve standards of TB care and enhance the effectiveness of the health-
care process. It allows all parties to be held more accountable to each other, fostering
mutual interaction and a “positive partnership”.
Developed in tandem with the International Standards for Tuberculosis Care (1) to promote a
“patient-centred” approach, the Charter adheres to the principles on health and human rights
of the United Nations, UNESCO, WHO and the Council of Europe, as well as other local and
national charters and conventions (2).
The Charter embodies the principle of Greater Involvement of People with TB (GIPT). This
affirms that the empowerment of people with the disease is the catalyst for effective
collaboration with health-care providers and authorities and is essential to victory in the fight
to stop TB. The Charter, the first global “patient-powered” standard for care, is a
cooperative tool, forged from a common cause, for the entire TB community.
PATIENTS’ RIGHTS
1. CARE
a. The right to free and equitable access to TB care, from diagnosis to completion of
treatment, regardless of resources, race, gender, age, language, legal status, religious
beliefs, sexual orientation, culture or health status.
b. The right to receive medical advice and treatment that fully meets the new
International Standards for Tuberculosis Care, centring on patient needs, including
those of patients with MDR-TB or TB-HIV co-infection, and preventive treatment for
young children and others considered to be at high risk.
c. The right to benefit from proactive health sector community outreach, education
and prevention campaigns as part of comprehensive health-care programmes.
2. DIGNITY
a. The right to be treated with respect and dignity, including the delivery of services,
without stigma, prejudice or discrimination by health-care providers and authorities.
b. The right to high-quality health care in a dignifi ed environment, with moral support
from family, friends and the community.
3. INFORMATION
a. The right to information about the availability of health-care services for TB, and
the responsibilities, engagements and direct or indirect costs involved.

129
b. The right to receive a timely, concise and clear description of the medical
condition, with diagnosis, prognosis (an opinion as to the likely future course of the
illness) and treatment proposed, with communication of common risks and appropriate
alternatives.
c. The right to know the names and dosages of any medications or interventions to be
prescribed, its normal actions and potential side-effects and its possible impact on
other conditions or treatments.
d. The right of access to medical information relating to the patient’s condition and
treatment and to a copy of the medical records if requested by the patient or a person
authorized by the patient.
e. The right to meet, share experiences with peers and other patients and to voluntary
counselling at any time from diagnosis to completion of treatment.
4. CHOICE
a. The right to a second medical opinion, with access to past medical records.
b. The right to accept or refuse surgical interventions if chemotherapy is possible and

to be informed of the likely medical and statutory consequences within the context of
a communicable disease.
c. The right to choose whether or not to take part in research programmes without
compromising care.
5. CONFIDENCE
a. The right to respect for personal privacy, dignity, religious beliefs and culture.
b. The right to confidentiality relating to the medical condition, with information

released to other authorities contingent upon the patient’s consent.
6. JUSTICE
a. The right to make a complaint through channels provided for this purpose by the
health authority and to have any complaint dealt with promptly and fairly.
b. The right to appeal to a higher authority if the above is not respected and to be
informed in writing of the outcome.
7. ORGANIZATION
a. The right to join, or to establish, organizations of people with or affected by TB,
and to seek support for the development of these clubs and community-based
associations through health-care providers, authorities and civil society.
b. The right to participate as “stakeholders” in the development, implementation,

monitoring and evaluation of TB policies and programmes with local, national and
international health authorities.
8. SECURITY

130
a. The right to job security after diagnosis or appropriate rehabilitation upon
completion of treatment.
b. The right to nutritional security or food supplements if needed to meet treatment

requirements.
PATIENTS’ RESPONSIBILITIES
1. Share information
a. The responsibility to provide as much information as possible to health-care
providers about present health, past illnesses, any allergies and any other relevant
details.
b. The responsibility to provide information to health-care providers about contacts

with immediate family, friends and others who may be vulnerable to TB or who may
have been infected.
2. Follow treatment
a. The responsibility to follow the prescribed and agreed treatment regimen and to
conscientiously comply with the instructions given to protect the patient’s health and
that of others.
b. The responsibility to inform health-care providers of any difficulties or problems in

following treatment, or if any part of the treatment is not clearly understood.
3. Contribute to community health

a. The responsibility to contribute to community well-being by encouraging others to
seek medical advice if they exhibit symptoms of TB.
b. The responsibility to show consideration for the rights of other patients and health-
care providers, understanding that this is the dignified basis and respectful foundation
of the TB community.
4. Solidarity
a. The moral responsibility to show solidarity with other patients, marching together
towards cure.
b. The moral responsibility to share information and knowledge gained during

treatment, and to share this expertise with others in the community, making
empowerment contagious.
c. The moral responsibility to join in efforts to make the community free of TB.
Help turn these words into realities. Support the drive towards implementation in the
community.
Source: Patients’ Charter for Tuberculosis Care © 2006 World Care Council

131
132
Source: Guidelines for PMDT in India: May 2012
Summary of recommendations for Airborne Infection Control in M/XDRTB
WARDS
Key Recommendations:
 Located away from the other wards, with adequate facilities for hand washing and
good maintenance and cleaning.
 Adequate ventilation (natural and/or assisted ventilated) to ensure >12 Air Changes
per Hour (ACH) at all times.
 Adequate space between 2 adjacent beds, at least 6 feet
 Cough hygiene should be promoted through signage and practice ensured through
patients and staff training, ongoing reinforcement by staff
 Adequate sputum disposal, with individual container with lid, containing 5% phenol,
for collection of sputum
 All staff should be trained on standard precautions, airborne infection control
precautions, and the proper use of personal respiratory protection. A selection of
different sizes of re-usable N95 particulate respirators should be made available for
optional use by staff.

133
It is crucial that patients with Rifampicin resistance be referred for treatment as soon as
possible. If Rifampicin resistance – with or without INH resistance – is confirmed, the DTO will
trace the patient, with help of the Medical Officer – TB control (MO-TC) and Senior
Treatment Supervisor (STS) and bring them to the DTC where they will be counselled by the
DTO. Counselling should include (1) information on the lab results, and the reliability of lab
results from RNTCP certified C-DST laboratories, (2) the need for additional treatment, (3)
the importance of rapid initiation of treatment, (4) the services RNTCP offers for PMDT, (5)
what patients should do next, and (6) infection control precautions that are necessary, and
reassurance to the family against panic or unnecessary stigmatization of the patient. After
counselling, the patient is referred to the concerned DR-TB Centre with their DST result and
PMDT referral for treatment form
All MDR-TB cases will be offered referral for HIV counselling and testing at the nearest centre
if the HIV status is not known or the HIV test is found negative with results more than 6
months old
Patients should receive counselling on:

1) the nature and duration of treatment,
2) need for regular treatment,
3) possible side effects of these drugs and
4) the consequences of irregular treatment or pre-mature cessation of treatment.
It is advisable to involve close family members during the counselling, since family support is
an essential component in the management. Patients should be advised to report any side
effects experienced by them. Female patients should receive special counselling on family
planning.
PROVIDING COUNSELLING TO PATIENT AND FAMILY MEMBERS

Providing counselling and health education to the MDR-TB patients and their family members
about the disease and about the necessity of taking regular and adequate treatment is of
utmost importance. Health education and counselling is provided to all patients and family
members at different levels of health care, right from one at the periphery to those at the
DR-TB Centre facility. It is started at the initial point of contact and carried on a continuous
basis at all visits by the patient to a health facility. The counselling and motivation is
required to be done not only of the patient but also of the family members.
SOCIAL AND EMOTIONAL SUPPORT
Having MDR-TB can be an emotionally devastating experience for patients and their families - there
may be stigma attached to the disease and this may interfere with adherence to therapy. In addition,
the long nature of MDR-TB therapy combined with the medications’ adverse effects may contribute to
depression, anxiety and further difficulty with treatment adherence. The provision of emotional
support to patients may improve chances of adhering with therapy. This support may be provided
formally in the form of support groups or one-on-one counselling with trained providers. Informal
support can also be provided by physicians, nurses, community workers or volunteers, and family
members. Ideally a multidisciplinary team, comprising of a social worker, nurse, health educators,
companions, and doctors, should be set up to act as a “support to adherence” team to the patient.
Linking up these cases with the available social welfare schemes through active engagement with the
civil society partners and NGOs is another option the programme officer must explore to promote
treatment adherence.

134
One of the five components of PMDT in India:

Diagnosis of MDR-TB through quality-assured culture and drug susceptibility testing (DST):
- Proper triage of patients for C-DST testing and management under PMDT
- Co-ordination with National and Supra-National Reference Laboratories
Laboratory services required for introduction of PMDT

Optimal management of MDR-TB requires both mycobacterial and clinical laboratory services. At a minimum, the State
level Intermediate Reference Laboratory (IRL) or any other RNTCP-certified Culture & DST laboratory should provide:
- Diagnostic culture on solid and/or liquid media,
- Confirmation of resistance to rifampicin by either molecular tests (Line probe assay or other RNTCP-approved
technology);
- Confirmation of the species as M. tuberculosis or non- tuberculous mycobacteria (NTM); and
- testing for susceptibility to at least isoniazid and rifampicin by solid or liquid culture.
Definition of accreditation and certification:

Laboratory Accreditation means third-party certification by an authorized agency using internationally approved
standards for evaluating the competence of laboratories to perform specific type(s) of testing and is a formal
recognition of competent laboratories. It includes all aspects of the laboratory including physical infrastructure,
biosafety, competencies of staff, processes, procedures and quality system elements (QSE) enumerated in the system i.e
(ISO, CAP, NABL etc). Certification is a process by which a specific procedure being performed in the laboratory i.e DST
in TB labs is being quality assured by means such as standard EQA system (retesting and panel testing) by a higher level
laboratory to ensure quality of that service.
A patient is confirmed to have MDR or XDR TB only when the results are from a RNTCP quality-assured Culture &
DST Laboratory and by a RNTCP-endorsed testing method.
It is to be noted that rifampicin resistance is quite rare without isoniazid resistance. The great majority of DST results
with rifampicin resistance will also be isoniazid resistance, i.e. MDR TB. Therefore RNTCP has taken the programmatic
decision that patients who have any Rifampicin resistance, should also be managed as if they are an MDR-TB case, even
if they do not formally qualify as an MDR-TB case as per the above definition. Therefore programme and clinical actions
will be driven primarily by rifampicin DST results.
METHODS FOR DRUG SUSCEPTIBILITY TESTING

Presently, 3 technologies are available for diagnosis of MDR TB viz. the conventional solid egg-based Lowenstein-Jensen
(LJ) media, the liquid culture (MGIT), and the rapid molecular assays such as Line Probe Assay (LPA) and similar Nucleic
Acid Amplification Tests like Xpert MTB/Rif.
Conventional DST evaluates if M. tuberculosis grows in the presence of drug-containing media, and is also known as
phenotypic DST. Molecular DST evaluates for the presence of genetic mutations that are highly associated with
phenotypic resistance, and is also known as genotypic DST.
The differences between the tests should be understood. Phenotypic DST is available for more drugs, and is considered
very reliable for isoniazid (H), rifampicin (R), and streptomycin (S), and somewhat less reliable for other drugs such as
ethambutol (E).
Molecular/genotypic DST is highly reliable for rifampicin, but has limited sensitivity for detection of isoniazid resistance.
Results from any RNTCP-approved tests are considered equivalent, and can be the basis of clinical action, though in
some settings additional testing will be done.
Molecular/genotypic tests are much faster than phenotypic tests, as molecular tests don’t require growth of the
organism, and M. tuberculosis is notoriously slow growing. The turnaround time for C-DST results by Solid LJ media is
around 84 days, by Liquid Culture (MGIT) is around 42 days, by LPA is around 72 hours and by CB-NAAT is around 2 hours.
135
DST for Ofloxacin (O) and Kanamycin (Km) and Pyrazinamide (Z) will be introduced and gradually scaled up to all RNTCP-
certified C-DST Laboratory in the near future.
MDR DIAGNOSTIC TECHNOLOGY CHOICE
1. Molecular DST (e.g. LPA DST)
2. Liquid culture isolation and LPA DST
3. Solid culture isolation and LPA DST
4. Liquid culture isolation and Liquid DST
5. Solid culture isolation and Solid DST
SPECIMEN COLLECTION
An often-overlooked problem is that of obtaining adequate good quality specimens at the peripheral laboratories. Unless
specimens are collected with care and promptly transported to the laboratory under temperature control, diagnosis may
be missed, and the patient could miss the chance to be detected and put on the correct treatment. A good sputum
specimen may literally make the difference between life and death, and allow containment of the disease and prevent
spread to others in the family and community.
The Laboratory technician needs to explain the process of collecting “a good quality sputum specimen” and avoid using
vernacular terminologies that convey the meaning as saliva instead of sputum. In addition though the general guideline
for collection of sputa is one spot and one morning, this does not preclude from collecting 2 spot specimens that need to
be collected with a gap of at least one hour (60 minutes) if the patient is coming from a long distance or there is a
likelihood that the patient may default to give a second specimen.
A good sputum specimen consists of recently discharged material from the bronchial tree, with minimum amounts of
oral or nasopharyngeal material. Satisfactory quality implies the presence of mucoid or mucopurulent material. Ideally,
a sputum specimen should have a volume of 3-5ml. The patient must be advised to collect the specimen in a sterile
container (falcon tube) after through rinsing of the oral cavity with clean water.
Specimens should be transported to the laboratory as soon as possible after collection. If delay is unavoidable, the
specimens should be refrigerated up to 1 week to inhibit the growth of unwanted micro-organisms.
SPECIMEN TRANSPORTATION TO CULTURE-DST LABORATORIES

Fresh sputum samples will need to be transported from the DMC to the RNTCP-certified CDST laboratory in cold chain
within 72 hours. Ideally an agency (courier / speed post) with a pan district presence should be identified for this
purpose. Two innovative models for specimen collection and transport using fresh samples in falcon tubes to be
transported in cold chain using gel packs and their technical specifications have been developed by Gujarat (from
peripheral DMCs) and Andhra Pradesh (from high burden DMCs at TUs/DTCs).
The following points are critical for the collection of fresh sputum samples at DMCs:
- The falcon tubes and the 3 layer packing materials like thermocol box, ice gel pack (prefreezed at -20 degree for 48
hours), request for C-DST forms, polythene bags, tissue paper roll as absorbent, parafilm tapes, brown tape for
packaging box, permanent marker pen, labels, bio-hazard sticker, scissors, spirit swab etc. should be supplied to the
DMCs for collection of sputum through the DTO.
- The falcon tubes should carry a label indicating the date of collection of the samples and the patient’s details like
name, date of sample collection, name of DMC/DTC, Lab. No:- XYZ, specimen A or B
- The Lab technicians (LT) at DMCs should be trained to carefully pack the sputum samples in the cold box to avoid
spillage of the samples.
- The LT of DMC issuing the falcon tubes to the patients should also give clear instructions to the patients on correct
technique of collection of the sputum. Also the date of issue of the falcon tubes to the patient should be recorded.
- The LT of the DMC should ensure that the request for C-DST form is packed in a separate plastic zip pouch and placed
in the cold box before sealing the lid of the box. Also, the biohazard symbol should be pasted on the external side of the
cold box along with the label indicating the postal address of the RNTCP-certified C-DST Lab assigned.
- The LT of the DMC should promptly inform the sample transport agency like a courier / speed post service, speed post
or a human carrier to collect and transport the samples
136
As per the national guidelines for Biomedical waste management the containers used for transporting sputum samples to
the RNTCP-certified laboratory should be labelled with a “BIO-HAZARD” sticker.
CRITERIA FOR PRESUMPTIVE CASES OF MDR-TB

Criteria A –
Criteria B – in addition to Criteria A:
Criteria C – in addition to Criteria B

-ve previously treated pulmonary TB cases at diagnosis,
HIV TB co-infected cases at diagnosis
A patient who is a presumptive case of MDR-TB, should be referred by the respective medical officer –
peripheral health institute (MO-PHI) to the nearby DMC that has been developed for sample collection for C-
DST at the earliest i.e. as soon as the sputum results are available. If the diagnosis is based on Line Probe
Assay (LPA), the patient’s results will be available within 48 hours and the decision of starting the patient on
the appropriate regimen can be taken after results are available.
PRE-TREATMENT EVALUATION
The patient should be hospitalised (at the DR-TB Centre) for pre-treatment evaluation and treatment
initiation. Pre-treatment evaluation should include a thorough clinical evaluation by a physician, chest
radiograph, and relevant haematological and bio-chemical tests. Since the drugs used for the treatment of
MDR-TB are known to produce adverse effects, a proper pre-treatment evaluation is essential to identify
patients who are at increased risk of developing such adverse effects. A thorough clinical examination should
be done during the pre-treatment evaluation. The pre-treatment evaluation will include the following:
1. Detailed history (including screening for mental illness, drug/alcohol abuse etc.)
2. Weight
3. Height
4. Complete Blood Count with platelets count
5. Blood sugar to screen for Diabetes Mellitus
6. Liver Function Tests
7. Blood Urea and S. Creatinine to assess the Kidney function
8. TSH levels to assess the thyroid function
9. Urine examination – Routine and Microscopic
10. Pregnancy test (for all women in the child bearing age group)
11. Chest X-Ray
All MDR-TB cases will be offered referral for HIV counselling and testing.
GROUPING OF ANTI-TB DRUGS

Group 1: First-line oral anti-TB agents: Isoniazid (H); Rifampicin (R); Ethambutol (E); Pyrazinamide (Z)
Group 2: Injectable anti-TB agents: Streptomycin (S); Kanamycin (Km); Amikacin (Am); Capreomycin (Cm); Viomycin
(Vm)
Group 3: Fluoroquinolones: Ciprofloxacin (Cfx); Ofloxacin (Ofx); Levofloxacin (Lvx); Moxifloxacin (Mfx); Gatifloxacin
(Gfx)
Group 4: Oral second-line anti-TB agents: Ethionamide (Eto); Prothionamide (Pto); Cycloserine (Cs); Terizadone (Trd);
para-aminosalicylic acid (PAS)
Group 5: Agents with unclear efficacy (not recommended by WHO for routine use in MDR-TB patients): Clofazimine
(Cfz); Linezolid (Lzd); Amoxicillin/Clavulanate (Amx/Clv); thioacetazone (Thz); imipenem/cilastatin (Ipm/Cln); high-
dose isoniazid (high-dose H); Clarithromycin (Clr)
137
ENABLERS AND INCENTIVES
MDR-TB treatment can be successful with high overall rates of adherence when adequate support measures are
provided. These measures include enablers and incentives for delivery of DOT to ensure adherence to treatment and
may include the following:
rsement of travel expenses to patient and attendants for visits to DTC and designated DR-TB Centre
education on MDR-TB treatment;
ctions;
-salaried DOT providers
INDOOR ADMISSION
The patient will be admitted in the designated DR-TB Centre in-door facility for at least seven days post-treatment
initiation. This period of admission will allow for
investigations to be undertaken;
olerance of the Regimen for MDR-TB;

families;
the services in the respective district where the patient resides (including identification and
training of a local DOT provider and family treatment supporter);
The hospital should provide comfortable living conditions, adequate food, proper ventilation and sufficient activities to
keep the patients occupied. Further admission may be necessary during ambulatory treatment for management of
severe adverse drug reactions, complications, to assess need and fitness for surgical intervention; social reasons, etc.
After admission at the DR-TB Centre for at least seven days post-treatment initiation, the patient can be discharged to
the residence district with up to a maximum of one week’s supply of drugs, arrangements for injections in transit, and a
copy of the treatment card and referral form. The respective DTO should be informed by the attending physician of the
patient’s planned discharge 3 days prior to the actual date of discharge, by means of the RNTCP PMDT referral for
treatment form which can be sent by email.

138
M/XDR TB TREATMENT OUTCOME DEFINITIONS
Standardised treatment outcome definitions are to be used following treatment of an MDR-TB case. These
definitions apply to patients with rifampicin resistance (who are taken to be MDR-TB for management
purposes), and XDR-TB cases as well:
: A patient who has completed treatment and has been consistently culture negative (with at
least 5 consecutive negative results in the last 12 to 15 months). If one follow-up positive culture is
reported during the last three quarters, patient will still be considered cured provided this positive
culture is followed by at least 3 consecutive negative cultures, taken at least 30 days apart, provided
that there is clinical evidence of improvement.
: A patient who has completed treatment according to guidelines but does

not meet the definition for cure or treatment failure due to lack of bacteriological results.
: Treatment will be considered to have failed if two or more of the five cultures
recorded in the final 12-15 months are positive, or if any of the final three cultures are positive.
: A patient who dies

139
140

Best Practices in Programmatic Management of Drug Resistant Tuberculosis PMDT in India Publication PDF

Hochgeladen von

Dokumentinformationen

Originaltitel

Copyright

Verfügbare Formate

Dieses Dokument teilen

Dokument teilen oder einbetten

Freigabeoptionen

Stufen Sie dieses Dokument als nützlich ein?

Sind diese Inhalte unangemessen?

Copyright:

Verfügbare Formate

Best Practices in Programmatic Management of Drug Resistant Tuberculosis PMDT in India Publication PDF

Hochgeladen von

Copyright:

Verfügbare Formate

This publication is a five-part series on “Best Practices in Programmatic

Management of Drug-resistant Tuberculosis (PMDT) in India” that Citizen

Citizen News Service - CNS

Best Practices in PMDT in India | July 2013

Listen to me as I do not want anyone to go through what I am 99

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

• Documenting best practices and lessons learnt in rolling out prevention,

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

We found resident and senior doctors at

Best Practices in PMDT in India | July 2013

DR SK SHARMA, Professor and Head of the department of Medicine,

Best Practices in PMDT in India | July 2013

DR RM LEUVA, District TB Officer (DTO), Ahmedabad Municipal

Best Practices in PMDT in India | July 2013

There is maximum ventilation in the wards. We make

King George’s Medical University (KGMU), Lucknow

KS Roy Hospital, Kolkata

Best Practices in PMDT in India | July 2013

MS BANSRI MONDAL, Nursing

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

The patients I spoke to said

LRS Institute of TB and Respiratory Diseases, Delhi

Best Practices in PMDT in India | July 2013

Rajan Babu Institute of Pulmonary Medicine and

Best Practices in PMDT in India | July 2013

Recommended air exchange is 12 per hour, here in the

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

Civil Hospital, BJ Medical College, Ahmedabad, Gujarat

We need trained counsellors at macro and micro

Best Practices in PMDT in India | July 2013

“Initial counselling is most important. We must counsel the presumptive MDR-TB

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

Calcutta Rescue Centre, Kolkata

Ms Bobita Chakarbarty, Nursing Supervisor:

Best Practices in PMDT in India | July 2013

One of my patients is a young girl who

A female patient: Even in school I keep a

Best Practices in PMDT in India | July 2013

King George’s Medical University (KGMU), Lucknow

We need to raise awareness about overarching benefits of daily adequate sunlight

KS Roy Hospital, Kolkata

Best Practices in PMDT in India | July 2013

There is one TB-HIV counsellor

Bansri Mondal, Nursing Superintendent:

A lot of stigma is still there, especially in

Best Practices in PMDT in India | July 2013

Another MDR-TB Patient:

Best Practices in PMDT in India | July 2013

COUNSELLING OF FAMILY MEMBERS

Best Practices in PMDT in India | July 2013

Best Practices in PMDT in India | July 2013

COUNSELLING AT DIFFERENT LEVELS

Best Practices in PMDT in India | July 2013

Dr Bandita SenGupta, Project Manager, CARE India

Best Practices in PMDT in India | July 2013