Challenges faced by TB Patients

Imagine you are locked in a room, isolated, and everybody else in the world is having
fun out there. Even worse, nobody wants you anywhere close to them because they
think youre a carrier of some gross disease. How does it feel? Bad? Worse? Pathetic?
Well, unfortunately that is how a person suffering from Tuberculosis (TB) is usually
treated! The question is why one could possibly think of doing anything like this. The
answer to that lies with not anybody else, but within you!

There has been an unprecedented rise in the incidence of TB. It is regarded as one of
the most infectious diseases that have continued to dominate the global burden of
communicable diseases. Globally speaking, TB accounts for deaths of about 2 million
and about 9 million infections annually. Though an ancient disease, TB is regarded as
the most common infectious agent responsible for global human disability and
mortality. Having stated the statistics & facts, the ultimate challenge associated with
addressing the problem of TB is stigma. People suffering from TB have constantly
faced (and are still facing) a discrimination by friends, neighbours, family, employees
at organisation and possibly even at public places if they get to know. The constant
fear of the spread of disease has led to a widespread desertion of such patients and
consequently, they have been shunned by their respective families and receive
diminutive amount of care. They are very often abused and even humiliated by their
own family members who tend to regard them as a burden to the family.
Talking of the procedural challenges the TB patients deal with, the daily
dosage of injections are really painful. Patients sometimes even develop painful
swellings at the injections site. Moreover, these injections cannot be given by the
regular community health workers, instead the patients have to pay a minimum
amount per day to a local nurse. These are patients who are living below poverty line
as defined by the World Bank. The social stigma of these patients is such that they
often lose jobs and livelihood. So there is very little food on the table. This, combined
with the expenses they incur to get access to the treatment makes matters worse.
Not to forget that the side effects of the second line drugs are multifarious.
Patients suffer from nausea, vomiting, acidity, electrolyte imbalance, thyroid
disturbance, psychological problems such as depression and suicidal tendencies, and
even liver and kidney problems. These patients have to make several visits to the
public hospital for over two years, for repeated tests and consultation by the TB
specialists. They are forced to incur huge expenses in transport. The even have to buy
the expensive antibiotics on their own. Unfortunately, the Government of India does
not provide free medication for these patients. All this, ultimately resulting in a lower
quality of life of the patient.

Other difficulties that patients often face but are not highlighted are the ones like the
appointment times with doctors that are not convenient to the patients, long waiting
periods and even lack of privacy at the health care facilities where they undergo
regular treatment. Sometimes, patients tend to have an inclination towards causing
disruption in taking drugs because of the usually lengthy period of treatment in
addition to the fear of the never-ending agonising injections. Outside the health
facility, further limits to successful treatment uptake might be linked to low voluntary
counselling and testing uptake by adult TB patients. These challenges are multifaceted
behavioural problems arising from various reasons. These challenges depend on
sociological factors like race and gender, which might influence adherence. Cultural
beliefs, especially in relation to usage of traditional medicines, can also be a challenge
in addition to the adverse effects of poverty on families and communities, which may
be characterised by constant hunger, trauma and issues of food insecurity.

At a macro level, it can be said that patients tend to experience three sets of
indistinguishably linked barriers to successfully treating TB: attending the health
centre initially, attending the health centre repeatedly and experiences while getting
the treatment at the health centre. These barriers are further complicated by
demography, poverty, gender and various such stimulus. The challenge before us lies
in moving beyond just documenting the barriers from patients' perspective to actually
addressing them.
Such challenges, when not addressed, the possibility of adhering to the
treatment is compromised. It is only when we consider that these patients of TB are
the same like us in all parameters and have inalienable rights like all of us, can we be
able to address the challenges.