Why we

must provide
HIV treatment
information

Most people who test HIV-positive

go through similar experiences.
The shock of diagnosis, isolation,
denial, sometimes prejudice.
But almost right away there
is the need for information:
How long will I live?
Can I get treatment?
Does the treatment work?
Are there side effects?

Simon Collins
UK

Learning
to save
your own
life

Treatment literacy begins when

HIV has brought a radical

You get better health

outcomes from greater

a person asks the rst question:

change in how treatment and

What is the virus? What is the

information about treatment

involvement of people in

CD4 count? It continues as you

is delivered. You begin by

their health care. In a Uganda

ask for more information.

trusting in your doctor but

clinic I visited, people who

doctors have limited time and

started treatment, who

If you keep asking questions,

resources. Doctors speak a

became stronger and got

eventually you get an answer

different language.

their health back, worked as

treatment counsellors for the

you understand. Soon you

can answer for yourself, your

Who has the best interest in

next group of people starting

friends and your communities.

you having the best health?

treatment. They have 99%

Who has the best potential to

adherence in that clinic.

These are the politics of

make treatment work for you?

treatment literacy. You have a

basic right to understand your

You are the one who has

body and health; choose and

the greatest interest in your

have access to free treatment;

staying alive.

have information about

treatment choices.

What is the role of HIV-positive

people in treatment literacy and
peer advocacy? The experience
of being a patient is often
just as important as medical
training. Patients are highly
motivated. They want to live.

Vuyiseka Dubula
South Africa

Many nurses not trained

Our treatment literacy

In the private sector you will

in HIV. They are seeing

practitioners are in the clinic

not come into contact with a

patients with opportunistic

to educate people about what

treatment literacy practitioner

infections but they are not

to expect before they start

and you may never hear about

allowed to prescribe certain

treatment. There is limited

side effects and learn the

medications uconazole,

time to explain everything

things you need to know. So

for example because only

when a patient sees the nurse,

going to the private sector

doctors can prescribe it.

but if the treatment literacy

also has disadvantages.

But the doctor only comes

practitioner has explained

once a month. The nurses

things the nurse can spend

A big problem for us in South

see people who are sick but

only ve minutes instead of

Africa is our president and

cant help them. They tell

an hour. Treatment literacy

our Minister of Health. Our

them, Go home, there are no

practitioners can also do

president says there is no

uconazole tablets.

voluntary counselling and

health care crisis in our country.

testing (VCT) and relieve the

But isnt having only one nurse

If a nurse tells you there is

burden on nurses. There is only

for 500 people a crisis?

no medication and turns you

one pharmacist for 500 people,

away, then the next time you

so our practitioners can

wont spend your money for

also be trained as assistant

transportation. So, you take

pharmacists. Treatment

a ve minute walk, and see a

literacy practitioners are

friendly face at the traditional

now participating on some

healer. They will take time with

clinic committees.

the patient and that patient

may not go back to the HIV

90% of people using public

clinic. Thats why some people

healthcare system are poor

will opt for spiritual healing

people. Only 10% of our

and look for purication with

population uses the private

bleach or something like that.

sector but more money is

allocated for the private sector
than the public.

Irina Deobald
Russia

Why
treatment
literacy?

In one Russian region there

was a shortage of drugs and
people started taking half of
the dose. But this meant they
could develop resistance. The
drugs were back in stock again
in a few weeks, but they didnt
know how to correctly manage
the interruption. They didnt
have the correct information.

Paul Kasonakoma
Zambia

We heard of a person who went

We see many side effects

to a conference and ran out

with stavudine peripheral

of his medicine. He then came

neuropathy and lipodystrophy.

home and counted the number

People dont have the capacity

of days he missed, then took

to go back to the doctor and

them all at once. He died.

say, This is not working for

He didnt know better.

me. If people on treatment

know how to recognise these

People are afraid of the

symptoms in the early stages,

drugs. If you ask the average

then they can change drugs

Zambian about antiretrovirals

before it is too late.

(ARVs), they say the person

with HIV on treatment dies like
a pig fat, instead of skinny
like with AIDS. We say, Look,
we are taking these drugs and
we are living. This makes a lot
of sense to people.

Johanna Ncala
South Africa

In South Africa we are still

ghting the bad information
spread by President Mbeki
and Mattias Rath. (Rath sells
vitamins as a cure for HIV and
tells people that ARVs are
poison. Mbeki doubts that HIV
causes AIDS.)

Francina
Lusungu Nyirenda
Malawi

You can put people on ARVs,

but without information there
are problems. We want people
to know about the effect of
stopping the medications. We
want them to know that they
must continue for life.
In Malawi, we dont have
information in our own local
languages that people can
understand. We have most of
the literature in English, and it
is a matter of translating it so
more people can understand it.

Loon Gangte
India
Rajiv Kae
Nepal

I know four families who sold

I went to a TB conference last

After producing ve books, our

volunteers have learned so

everything they owned to get

year and they talked about

ARV drugs for a family member

the rewards they give patients

much. It is really empowering

with HIV. They didnt know that

for taking their drugs, and the

for them. We talk about every

treatment was for life, and

high tech bottles that beep

detail down to the kind of

when they used up their money,

and have LCDs in the top that

paper we use.

the HIV viral load bounced back

tell when you opened it. Isnt it

and two of them died.

better for people to understand

We had to work with the

why they are taking their drugs

language. A lot of the i-Base

instead of giving them rewards

concepts were specic to

for taking the drugs?

the UK and we had to change

those. Many of the brand

We have come out with ten

name drugs mentioned are

booklets and several fact

not available to us, so we use

sheets. We were inuenced

the generic names. There are

by the early TAC posters. In

possible double meanings and

our next set of posters we will

difcult grammatical points.

have people representing the

Someone translated the

messages in the posters. We

meaning of prevention during

use a lot of materials from

TAC. We used other sources
like i-Base to make our
training manual and treatment
literacy books. We wanted to
share our materials with our
Indian friends as well and we
translated the materials into
Hindi so they will get inspired
to make treatment materials.

labour in the booklet as

preventing HIV while at work.

Sibonelo Mduli
Swaziland
Julius Amoako
Ghana
Csar Mufanequio
Mozambique
In Swaziland, we have the

The drugs are there we dont

There are many taboos in

paternalistic approach to HIV

have a problem with the drug

my country and illiteracy is

treatment. People are just

supply. But all our posters

high. If you speak about HIV

given the pills and told to take

and education are talking

in Mozambique, they think

them at 8.00 in the morning

about prevention which is

it is a death sentence. In

and at 8.00 at night. There is

OK but we need information

the rural areas if someone

no explanation at all.

about treatment too. Lately

has herpes zoster, they say

we are moving backwards.

they were bewitched. We

The government thinks that if

need to educate people. We

too many people learn about

have community training

treatment then too many

programmes. We teach people

people will demand it and it

how to identify and treat

will create a problem.

opportunistic infections and

what to do if they see the
symptoms in their bodies.
But people ask, Where did
you get this information?
They say, You cant tell
medical professionals about
your symptoms or what kind of
medicine you should take.
But we say, You are helping
the doctor because you
are the person who has to
take the medicines.

Sipho Mthathi
South Africa

Traditional medicines have

been used for a long time and
people see that they work to
take away symptoms, but they
are being used poliitically to
divert attention from ARVs.
In TAC we have struggled
internally about the role of
traditional medicine. Research
on traditional medicines has
not been funded. Traditional
medicines have not been
researched and validated the
way ARVs have. But they are
being used by politicians to
undermine choice.

Siama
Abraham Musine
Kenya

If people think the cause of

AIDS is bad will between men
and women, we ask them,
Then how do you explain that
babies also have HIV?

Sibonelo Mduli
Swaziland
Roman Dudnik
Russia

Many people fear taking ARVs,

We have rapidly increased

because they think it will make

access to treatment in Russia.

them worse. They dont know

But we dont have enough

about the side effects, but

patients because they dont

because they know people

know they are infectedor

who have died after taking

they are afraid of side effects,

ARVs, they think it was the

or they are afraid to come

drugs that killed them. Some

back to clinic because they

people die just because they

have a bad relationship with

were not treated in time or

the doctor.

they were treated too late.

Weve also been taught you

It was good that the

cannot take the traditional

government bought a lot of

medicines along with ARVs.

drugs, but they didnt think

So people stop their ARVs.

about the information. Our role

There have been rumours that

We are developing materials to

the drugs are rejects from

inform people that treatment

is to provide this information.

the US or are cheap brands.

is available and motivate them

We are a traditional country

to get tested.

and have traditional medicine,

so we have people stopping
ARVs to take African potato
or other traditional medicines.
We also have paternalistic
doctors, who say you have to
take these pills at a certain
time, and if you ask too many
questions you might get in
trouble. And people in rural
areas especially women
dont have money to travel to
the clinic even if the treatment
is available.

Paul Kasonkomona
Zambia

Treatment
literacy
for whom?

We have deaf people coming

to us now for treatment
information and we are nding
new challenges there. They
translated the positive in
HIV-positive as something
good in sign language.
We need to target messages
to disabled people. We need
simple materials that can be
used with people who are
deaf or blind.
Children often dont know
what they are taking. The
mothers remove the labels
from the bottles. But one
child saw the label and
gured out that she had
HIV, because she had seen
treatment information.

Julius Amoako
Ghana

The posters I take back

from TAC really speak
about treatment education.
Everybody at my hospital sees
the posters. Everybody at my
church sees the posters. Then
they realise that, if there are
really these drugs, then my
brother or my girlfriend did not
have to die from AIDS.

Johanna Ncala
South Africa

How to do
treatment
literacy

In 2003 TAC started treatment

literacy programmes. We
call our treatment education
workers treatment literacy
practitioners, which helps
with their being accepted by
medical professionals. Once
the medical people see we
help get people on treatment,
they want more and more
treatment educators from TAC
to come into the hospitals.

Sostain Moyo
Zimbabwe
Chris Green
Indonesia

The eld of medicine is highly

One of our jobs is to translate

protected in my country. For

between the doctors and the

example, we have nurses who

people in our constituency. We

are trained to do rapid HIV

have to understand both the

testing, but the lab workers

language of the people and

dont allow anyone else to

the medical professionals.

perform the rapid tests, so

not enough tests are done.

If we go to the doctors and

say one of our friends got

If we take up the TAC model

better because of this or

of adherence practitioners

that, they will not accept it.

in the hospitals, they will

It is anecdotal information.

protest that only medical

You have to bring them the

people can offer treatment

information and counselling.
How did others overcome that
protected discipline?

medical literature and say:

Here is why we believe this.

Simon Collins
UK
Siama
Abraham Musine
Kenya
If your Prime Minister

I need to know how to go

becomes ill, he will ask a

about giving information to

doctor about his health. So it

the church leaders. The church

is natural that he thinks the

leaders say if you are faithful to

same is good for you too.

God, you will be healed. Most

We have learned the language

through the churches.

of our people who die are dying

that doctors use. We go to the
scientic literature to nd out
what is true. Because you are
in a difcult situation, you are
trying something radical, and
they are threatened by this.

Loon Gangte
India
Simon Collins
UK

Our job is hard. We have

None of this is xed. The

to learn from the scientic

information we give out

knowledge and put it into

today is based on the best

the language of our people.

we know now but in a year

Still, the scientists cant

it may be different. If it is,

study everything. Deciding

then community treatment

what is best to do for an

advocates are likely to be

individual still depends on

talking about this earler than

understanding that person.

many doctors.

Rajiv Kae
Nepal

We had no formal written

After the books were

proposal or mechanism for

developed we ran training

adapting these materials.

workshops and we got

In the past we worked with

feedback from the people who

Family Health International

used the materials. After two

and had to go through many

years of working on this, I see

cycles of review, but not

changes in the community.

when we adapted the i-Base

I hear people talking about

materials. We included things

how a specic drug in their

in our books that are not in

TB regimen is interacting

the national HIV treatment

with other drugs in their HIV

protocol. But our goal was to

regimen. A few years ago

include the information we

no one was on ARVs and

thought was important that

now they are thinking about

we thought should be shared.

interactions with their ARVs.

For example, we had a chapter

on sperm washing, and a
government ofcer was upset
with this. But we didnt care.
It was important for people to
know that this was available in
some countries.

Linda Mafu
South Africa

Issues about sex are difcult.

We need to nd the right
words that people use in the
local community; words that
are comfortable for them.
We use songs to teach about
side effects and treatments.
It is important to be a part
of the community so we do
not insult the people we are
working with.

Simon Collins
UK

Someone had to invent these

terms in the rst place. The
community quickly replaced
the term treatment compliance with treatment adherence. We use HIV-positive
instead of HIV-infected.

Vuyani Jacobs
South Africa

Our TV programme Beat It is

watched by nearly a million
people each week. Beat It is a
bridge between HIV activists
and government ofcials.
Beat It has made a big
difference in peoples lives.
All the materials are positive,
never negative. People say,
I know you from Beat It and
they tell me they are on ARVs.

Lulekwa Dlelaphantsi
Nombasa Gxuluwe
South Africa

We provide education in clinics,

In dealing with the HIV

We talk about the proteins as

the building blocks or bricks

in churches, and schools. We

lifecycle, we do the scientic

do the virology; looking at the

explanation, then we have the

used to build other parts of

scientic study of the virus

participants act out what is

the body. Instead of saying the

itself. We look at the life cycle

happening in the human body.

gp120, we say the key that

of the virus. We look at the body

opens the lock so that the virus

and study the cells, the tissues,

We try to simplify the scientic

the organs, that make up the

terms so as to reach the

person. Then we look at the OIs

masses of people, who are

(opportunistic infections).

mostly illiterate.

can come inside the house.

People act out the parts of
human cell and the virus. When
the gp120 meets the human

We look at what is happening

to the body when a person has

We refer to the immune

cell, the cell opens and the

shingles. Then we look at the

system as the soldiers of

three enzymes and the RNA

treatments that are available in

the body. What is the role

enter the human cell.

the public health settings.

that the soldiers play in the

body in protecting you from

RT (reverse transcriptase)

We use songs to mobilise

the invaders? Here comes

attaches to the nucleotides

people, so they know what

HIV. Now the soldiers of the

and changes the RNA into

is happening. Songs can

body cant function properly

viral DNA. It must be double

deal with the politics within

anymore. Other people use the

stranded. Then integrase

the HIV sphere. Educational

example of a football team to

enters the nucleus. It puts the

songs deal with shingles, TB

show how the virus operates

viral DNA into the human DNA.

in the body.

Then the nucleus does

different types of TB. If it is in

the head, we point to the head

its work, which starts to

while we are singing.

manufacture more proteins

and more viruses. They come

Here are three songs that we

out as a chain of proteins.

sing in English:

Then the protease is waiting

to cut the chains so the new

You better change your mind.

virus can go off with part of

You better condomise.

the cell membrane.

You do PMTCT where you are.

You do PCR where you are.
All over, the world is talking
about antiretrovirals.

Artur Ovsepayan
Ukraine

In our country, we are not as

Doctors are not able to explain

open and it is difcult to ask

what they know in ordinary

people to sing or dance. In our

language. So we have doctors

education, we use methods

participate with HIV-positive

like asking people how they

people in our seminars. This

understand HIV and how they

helps to bring both groups to

learned about HIV.

the same level and get them to

We always have three main

about how to solve the

come to the same conclusions

topics that people want to

problem of HIV. So we try

talk about:

to decrease the boundaries

between doctors and patients.

Is HIV a punishment from God?

We use this game as a starting

Did it come from space?

point and then move to more

Is it a result of a

complicated topics.

pharmacological experiment?
After we demonstrate the
HIV lifecycle we divide into
three smaller groups and ask
people to demonstrate the
different lifecycle stages. After
that exercise it is easier to
explain the classications of
antiretrovirals and how they
work. It is very important that
everyone can explain how the
ARVs work and can pronounce
their names. When participants
can repeat what you have told
them, then the information will
stay in their minds longer.

Sipho Mthathi
South Africa

I may have a different theory

of ill health than the germ
theory. In the rural areas,
there is often a very different
understanding of ill health.
What do you say when people
say, I dont have a virus, I
have been bewitched?
How do you integrate other
belief systems to promote the
understanding you want to
promote? If I dont understand
germ theory, how can I even
understand what you are
saying? How do you start from
where people are?

Roman Dudnik
Russia
Loon Gangte
India

We adapt existing treatment

There is nothing in Hindi for

materials. We adapted a Dutch

the real people who need it.

training model to our setting. It

We are having the rst

begins with an initial three-day

treatment workshop in Delhi.

face-to-face meeting, then

We take treatment information

continues with a four-month

materials from all over on

internet-based distance

the internet. We will take all

learning phase. The exercises

this and feed all the wisdom

progress in difculty from

into our treatment handbook.

week to week. You can work

Im crazy about simplied,

individually or as a group. At

non-technical and localised

the end you send your work to

language. I dont yet know

the moderator for evaluation

how to document all this

and take a test.

wisdom into a form I can use.

We are observing.
The language people are using
has changed. They are talking
about adherence and side
effects now. In our country you
need to translate materials
into at least seven languages.
I might be missing something,
because all I know is I want
something in Hindi.

Paul Kasonkomona
Zambia

We did the role play with the

gp120 and the CD4, because
people always wonder why the
HIV follows the CD4 cell.

Siama
Abraham Musine
Kenya

At the rst treatment literacy

The T-shirt really breaks the

training we show people how

silence. The people see it and

to communicate with medical

want to know more. It used

people and how to ask for

to be I put it on and all the

what they need. Now we have

people run away. Now they

people getting to the clinic

want to stop and talk to me

before they have AIDS, which

and learn more about HIV.

is much better.
If you are treatment literate,
then you know how to
recognise the infections and
prevent them. People now go to
the clinic about their symptoms
and get proper treatment. They
demand the treatment.

Irina Deobald
Russia

ARVs are now available

through the government,
but there is still a lack of
information. People are afraid
of side effects, but the medical
people dont have time to
discuss the side effects.
The medical staff does not
have the time to communicate
with the clients. We have peer
counsellors to give information
and their own experience. We
have different printed materials.
We do trainings and workshops
for people with HIV. I hope to
nd new tools to make the
information we have more
accessible. We need to use
common language more. We
need cooperation with medical
workers and state structures.

Gregg Gonsalves
USA

Treatment
literacy
when?

It is one thing to learn the

doctors language, but there
is still great resistance to
community-based literacy by
governments. This is a political
struggle. It will be hard. We
know that treatment literacy

Now!

works there is scientic

evidence to say it works. But
it will take campaigning and
lobbying and struggle to make
it a reality.

Johanna Ncala
South Africa

I came to TAC thinking I knew

about treatment because I
was a nurse and came from a
medical background. But TAC
taught me to not just to take
things on faith without asking
why. Now we are asking, Why
I am doing this? Why this is
happening in my life?
Ive learned to be assertive
and stand up for what I believe
to not be ashamed or hide
that I am taking my ARVs.

Paul Kasonkomona
Zambia
Sipho Mthathi
South Africa

We have even pushed the

Science is very much about

government to put people

power and no one willingly

in prisons on ARVs.

gives up power. How can we

reclaim science and make it
about helping our communities?

Rajiv Kae
Nepal

Doing treatment literacy work

is different from other work as
an AIDS activist. It is more like
being a teacher. I really enjoy
the work I am doing these days.

From the June 2006

HIV i-Base guide
Introduction to
Combination Therapy

What, when, why

mL is an abbreviation for

Even if you are well, it is a

millilitre or cubic millimetre,

good idea to get to know

a standard measurement for

something about treatment

volumes of liquid another

now, before you need it. This

abbreviation for this is mm

is particularly important if your

CD4 count is falling, or if you
have a high viral load.

Do not feel rushed or

A low CD4 count does not

Does everyone need

When discussing treatment

When should I start treatment?

Combination therapy using at

treatment?

Ask as many questions as

When to start treatment is

pressurised into doing

mean that you will denitely

least three drugs has now been

At some point, most HIV-

possible until you are happy

something you and your doctor

something you dont

become ill. It is, however,

with the answers.

must discuss together. You are

understand. If you have only

much more likely.

the person who has to take the

recently been diagnosed HIV-

Do the drugs really work?

How long will the drugs work?

and other questions.

In every country that uses

This guide is manly written

ARVs, there has been a

for people starting their HIV

dramatic drop in AIDS-related

used for over ten years. Many of

positive people will need

combination, and for anyone

deaths and illnesses.

the individual drugs have been

treatment, though when

studied for even longer.

people will need it can vary a

Get useful information

pills. So, you have the choice

positive, you will need to deal

Most of the drugs used to treat

lot. HIV infection progresses

from other sources. This

over whether you start, as well

with that rst.

these HIV-related illnesses can

as which drugs you use.

While your CD4 count is

take than anti-HIV drugs.

currently using HIV treatment

who was never given support

Treatment works for women,

information before they

men and children. It works no

The length of time that any

in different people at very

includes the internet, friends,

started treatment.

matter how you were infected

combination will work depends

different rates.

newsletters and phonelines.

be more toxic and difcult to

with HIV. Whether this was

mainly on you not developing

It is recommended to start

above 300, you still have a

What is antiretroviral

sexually, through IV drug use,

resistance. This depends on

About one third of HIV-positive

Even if you are well, it is a

treatment before your CD4

good immune system. Below

Although you may be worried

combination therapy?

or by blood or blood products.

getting, and keeping, your viral

people will stay well for up to

good idea to get to know

count falls below 200. Even at

300, you are at a higher risk

about using treatments, HIV

Combination therapy is the

Taking HIV drugs, exactly as

load to undetectable levels,

10 years after infection, even

something about treatment

this level, there is unlikely to

of infections that cause

and AIDS is still a very real

term for using three or more

prescribed, will reduce the

below 50 copies/mL.

without treatment.

now, before you need it.

be an urgent need for you to

diarrhoea and weight loss.

and life-threatening illness. It

drugs to treat HIV. It is also

virus in your body to tiny

called triple or quadruple

amounts. This then lets your

If your viral load stays unde-

About 60% will start

This is particularly important if

therapy or HAART (Highly

immune system recover and

tectable, you can use the same

treatment after 4-5 years.

your CD4 count is falling, or if

Active AntiRetroviral Therapy).

get stronger by itself.

combination for many years.

is possible to delay treatment

start treatment straight away,

HIV drugs are also called ARVs.

if you are not ready.

If your CD4 count falls below

until it is too late. Illnesses

200, your risk of developing

that can occur at any time

Ask your doctor to tell you

a pneumonia called PCP

when your CD4 count is below

2-3% of people can become

about the different drugs that

increases. If it falls below

200 can be fatal.

you have a high viral load.

These drugs work in different

Regular monitoring, using

UK guidelines state that

ill more quickly and need

you can use. You need to know

100, then your risk of serious

ways and at different stages

blood tests, will check that the

getting your viral load below

treatment much earlier.

the good and bad things about

illnesses increases even further.

of the HIV life cycle.

drugs continue to work.

50 is a main goal when

starting treatment.

Viral load tests measure the

each of them.
2-3% can go for 15-20 years
without treatment.

Results are given as copies/mL.

Take time to think about

what you want to do.

amount of HIV in your blood.

Whether you need treatment

CD4 tests measure how

is something you have to

strong your immune system is.

discuss with your doctor.

Results are given as cells/mm3.

This will usually take place

over several visits.

Even if you start with a very

low CD4 count, you could
regain enough of your own
immune system for your body
to recover from many HIVHIV virus

related illnesses.

entry inhibitors work

by stopping HIV getting
into the CD4 cell

If you use HIV treatment at

the right time, and in the right
way, you should stay well
much longer.

HIV drugs work in

different ways

nukes &
non-nukes
(NNRTIs)
both work by
stopping one
of the main
ways that HIV
reproduces
inside the
CD4 cell

protease
inhibitors work
by stopping any
new HIV virus
from leaving
the CD4 cell

Adherance
Why it is so important

What is adherence?

How much is enough?

Adherence is a word to describe

Taking medication exactly on

taking your drugs exactly as

time is very important.

prescribed. This includes taking

them at the right time. It also

However, there is usually a

Adherence rates

Resistance
What is resistance?

% of people undetectable

Resistance to anti-HIV drugs

81%

occurs when the structure of

at low viral load levels between

Some drugs are cross-

Avoiding resistance is one of

64%

the virus makes tiny changes.

50 and 500 copies/mL.

resistant to others. This

the most important conditions

80-90%

50%

These changes are called

70-80%

25%

mutations. This can mean that

under 70%

6%

window period of about an hour

that is still okay. Some drugs,

It is important that you develop

window period than others.

On the other hand, a US study

involves a complicated daily

Because of this variation, it is

schedule. You may need some

still better to aim for the same

better results.

support to get used to the

time each day.

means that if you become

for using combination

You should have a viral load

resistant to one drug you will

therapy. You need to use a

the drugs no longer work as

test four weeks after starting or

also be resistant to other

combination that is potent

well or even at all.

changing treatment. This should

similar drugs, even if you have

enough to minimise the risk

then be checked at least every

never taken them before. This

of getting resistance to any of

This result was more impressive

You can also be infected

3 months when on treatment.

is particularly true of drugs in

the drugs you take.

of people in prison who took

than nearly every clinical

with a strain of HIV that is

every dose showed much

trial. Most of these people

already resistant to some

Get the results when they

had already failed previous

or all HIV drugs.

are ready (usually after two

There are also varying degrees

stopping resistance involves

weeks). Dont just wait until

of cross-resistance.

reaching and maintaining

Sometimes you may still

tests that measure down to 50

copies/mL.

and some people, have a wider

changes it makes in your life.

How do I avoid resistance?

90-95%

includes following any special

Adherence can be very difcult.

What is cross-resistance?

over 95%

diet restrictions.

a routine. Treatment for HIV

Resistance can develop even

treatments and so were even

Because these patients

Diet restrictions are very

were in prison, every dose

less likely to get a good result.

This is why UK guidelines now

the same class.

The best chance you have of

your next visit.

recommend that everyone

undetectable on viral load

important. Ignoring these can

was supervised. All had viral

The point is not that you need

should have a resistance test

It is better to get your blood

get some benet from

This is the most important

be like only taking half a dose.

loads below 400 copies/mL

to be in prison! It is that if

before starting treatment.

tested 2-3 weeks before you

the second drug but the

thing you have to think about

You will not absorb enough

after a year and 85% were

you nd a way to take all your

You should have a resistance

see your doctor. Then you will

response is less likely to be

If you are starting treatment,

when you start taking a new

of the drug for it to work

below 50 copies/mL.

drugs as prescribed, you will

test if you have just been

have the results back for the

as strong or as durable.

this is a realistic goal.

combination.

properly. Resistance is then

get good results.

diagnosed with HIV, whether or

appointment.

more likely to occur.

not you plan to start treatment.

If your viral load has increased

what they mean

give yourself the extra time and

This may mean you lose the

How does resistance occur?

you should then get a second

Resitance mutations are

space you may need to adjust.

chance to use these drugs in

Mutations that lead to drug

test on the same day, to

usually given a number to say

the future.

resistance are generally only

conrm the results.

where on the virus that the

nothing else should take

The next question is:

taking a treatment with a

Often slight increases are due

a junction on a motorway. If

detectable viral load.

to errors in the test. You can

there is a letter afterwards, this

also have small increases that

stands for the new chemical

Start treatment when you can

During the rst few weeks,

Letters and numbers:

produced when you continue

priority over getting your

exactly how close to perfect

treatment right.

adherence do you have to get?

Many treatment centres now

Unfortunately, the answer is

have an adherence clinic or an

almost 100%

If your viral load is still above

go back down again that are

that the mutation makes. If

500 copies/ml after 2-3

called blips or spikes.

there is a letter before this

A re-test will check what is

should be there rst.

months, or above 50 copies/

adherence nurse.

mL after 6 months, you may

Many studies have shown

need to change your treatment.

that even missing one or two

12

impact on the chances of a

successful treatment.

undetectable viral load levels.

doses that was missed or late.

happening. If the combination

Your doctor should look

risk of further resistance by

closely at why the results are

checking this straight away.

not as good as they could be.

9

only 81% people achieved

That is only one in every 20

stands for the chemical that

is failing, you minimise the

doses a week can have a big

Even with 95% adherence,

change has taken place - like

They will want to discuss how

You will get a better response

you are managing adherence

to a second treatment if you

and side effects. They should

change when viral load levels

also test for resistance and

are still low.

possibly drug levels.

Which drugs?
Which combination?

The information on these

pages is from the June 2006
edition of Introduction
to Combination Therapy.
Information about HIV
treatment can change. If you
are reading this after June
2007, please check the i-Base
website (www.i-Base.info)
for updates.

If you are not using an

Glossary of four main kinds

The strategy for using HIV

of HIV drugs

drugs has been consistent

NNRTI as the third drug, UK

for the last eight years. The

guidelines now recommend

In relation to side effects,

AZT, used with 3TC in a twice-

Tenofovir is a once-daily nuke

In 2006, a new genetic test

for second-line PI therapy

daily combination, has been

that is cleared from your body

(HLA B-5701) started to be

unless there is an interaction

(tipranavir and darunavir)

widely used and studied. Until

by the kidneys.

used more widely by clinics

(see below), most nukes are

Protease inhibitors used

RTI = nucleoside or nucleotide

main principle is that any

that you should use a protease

also need to be boosted by

recently it was recommended

in the UK, to identify those

interchangeable. This means

analogue, also called reverse

combination needs to include

inhibitor boosted by ritonavir.

ritonavir, but both these drugs

as part of rst-line therapy in

Monitoring for kidney toxicity,

patients at greatest risk of

that if you get side effects

transcriptase inhibitor or nukes

at least three drugs.

This includes lopinavir/r

are designed for people with

both the UK and US.

and not using tenofovir with

this side effect. A negative

with one drug you can switch

(Kaletra), which has ritonavir

PI-resistance.

other drugs that are cleared

result with this test does not

to another.

The disadvantages of AZT

the same way, are important

guarantee that you will not

NNRTI = non-nucleoside

Although this is still generally

inside the capsule.

reverse transcriptase inhibitor

true, at the end of this

It also includes saquinavir,

Using a small dose of ritonavir

are related to side effects of

safety cautions. Tenofovir is

get this reaction, but it does

not linked to lipoatrophy.

greatly reduce the risk.

or non-nukes

Nukes that shouldnt

be used together

section we also discuss a few

fosamprenavir or indinavir,

in these combinations

anaemia and fatigue. AZT can

different approaches.

which all require a small dose

provides better and more

also cause lipoatrophy (fat

of ritonavir to also be taken at

sustained drug levels. This

loss). With short-term use, (up

Abacavir was originally

The concern of key resistance

nukes should NOT be used

Combinations usually include

the same time.

reduces the risk of resistance.

to a year) the fat loss may not

approved as a twice-daily

mutations with both tenofovir

together are:

PI = protease inhibitor

Some combinations of

EI = entry inhibitor [T-20

drugs from two different

It also reduces the numbers of

be noticeable in most people,

nuke, but more recently

(K65N) and abacavir (L74V) is

(enfuvirtide) is the only EI

families. This involves choosing

Atazanavir can also be used

pills and dietary requirements

and may reverse when the AZT

has been approved to be

that these changes have cross-

AZT and d4T

approved and is not used in

two nukes, plus either an

- although this is usually only

compared to unboosted PIs.

is then switched to tenofovir

used once-daily. The main

resistance to other nukes.

3TC and FTC

rst-line therapy]

NNRTI or a protease inhibitor

after side effects with an

Some people though nd

or abacavir.

side-effect of abacavir is a

For the small percentage

ddI and tenofovir,

(PI) boosted by ritonavir.

earlier combination.

even small doses of ritonavir

hypersensitivity reaction that

of people who do not get

especially with an NNRTI

increase nausea.

However, UK guidelines do

occurs in up to 7% of people

a successful result, the

abacavir and tenofovir

not now recommend AZT as

who use this drug. Symptoms

resistance will be important.

(in a 3-drug combo until

rst-line preference. They also

of the reaction include fever,

The best results have been

Atazanavir is a once-daily PI.

using combinations like these.

The daily dose is 2x150mg

Whether you use NNRTI- or

This is reected in both UK

pills when it is boosted by

PI-based regimens will depend

recommend that people who

rash, headache, sore throat,

However, there is not clear

by further research).

and US treatment guidelines.

100mg of ritonavir. If this

on discussions with your

are currently stable on AZT-

diarrhoea, abdominal pain,

recommendation to guide

d4T and ddI should not be used

dose causes side-effects, the

doctor, your previous health

based combinations should

tiredness, nausea, vomiting,

the choice between abacavir

together during pregnancy.

ritonavir can sometimes be

and whether you have any

discuss whether they want to

u-like aches etc that get

and tenofovir.

prior drug resistance.

switch to an alternative nuke

progressively worse each day.

before fat loss occurs.

Anyone who gets these

The UK treatment guidelines

recommend the third drug to

stopped and a slightly higher

be an NNRTI, with a preference

atazanavir dose (2x200mg)

for efavirenz over nevirapine.

used instead. Ongoing studies

symptoms must seek urgent

This is mainly because NNRTIs

may lead to atazanavir being

medical advice with a view to

require fewer pills or diet

more routinely used as a rst-

stopping the abacavir.

requirements than most PIs.

line choice in the future.

Once stopped, abacavir must

never be used by that person
again, as the reaction can
return with much greater
severity and is potentially fatal.

RTI

EI

RT
NN

PI

an interaction is explained

For more
information

Participants

AIDS Foundation East-West

Mouna Balil

Jack Lewis

Photography

(AFEW), Russia | www.afew.org

Association for the Fight

Community Health Media Trust

Wolfgang Tillmans

Against AIDS, Morocco

(CHMT)/Beat It, South Africa

Words

AIDS Infoshare

Julius Amoako Bekoe

Lawrence Mbalati

Bob Huff

www.infoshare.ru

Ghana AIDS Treatment Access

Treatment Action Campaign

Design

Group (GATAG), Ghana

(TAC), South Africa

No Days Off

AIDS and Rights Alliance

Polly Clayden HIV i-Base, UK

Sibonelo Mdluli

Editor

for Southern Africa

Simon Collins HIV i-Base, UK

Women and Law in Southern

Polly Clayden

www.arasa.info

Irina Deobald

Africa Research and

Proofreader

AIDS infoshare, Russia

Education Trust, Swaziland

Svilen Konov

All-Ukrainian Network of

Vuyiseka Dubula

Bongiwe Mkhutyukelwe

PLWH, Ukraine

Treatment Action Campaign

Treatment Action Campaign

Produced by the Treatment

www.network.org.ua

(TAC), South Africa

(TAC), South Africa

Action Campaign (TAC),

HIV i-Base and Wolfgang

Roman Dudnik

Sipho Mthathi

Collaborative Fund

AIDS Foundation East and

Treatment Action Campaign

Tillmans. Made possible

www.hivcollaborativefund.org

West (AFEW), Russia

(TAC), South Africa

with generous support

Nomfundo Eland

Sostain Moyo

from Benedikt Taschen

Community Health Media Trust/

Treatment Action Campaign

Zimbabwe Activists on HIV/

and TASCHEN.

Beat It | www.beatit.co.za

(TAC), South Africa

AIDS (ZAHA), Zimbabwe

Jaime Fabres HIV Treatment

Csar Mufanequio Mozambi-

Treatment Literacy

European AIDS Treatment

Working Group (gTt), Spain

can Treatment Access Move-

meeting organised by

Group (EATG) | www.eatg.org

Loon Gangte Delhi Network of

ment (MATRAM), Mozambique

TAC and HIV i-Base

Positive People (DNP+), India

Siama Abraham Musine Kenya

Meeting co-ordinator

Gay Mens Health Crisis

Chris Green

Organisation of PLWA, Kenya

Molly Slingsby

(GMHC), USA | www.gmhc.org

Spiritia Foundation, Indonesia

Johanna Ncala

Gregg Gonsalves AIDS Rights

Treatment Action Campaign

With support from the

Grupo de Trabajo Sobre

Alliance for Southern Africa

(TAC), South Africa

European AIDS Treatment

Tratamientos del VIH (GTT)

(ARASA), Namibia

Tantaswa Ndlelana

Group (EATG) and UNAIDS

www.gtt.vih.org

Nombasa Gxuluwe

Treatment Action Campaign

Treatment Action Campaign

(TAC), South Africa

Thank you to Mandla Majola

Ghana Treatment Access Group

(TAC), South Africa

Amon Ngavetene

and the TAC Khayelitsha

(GATAG) | www.gatag.org

Bob Huff Gay Mens Health

AIDS Law Unit, Legal Assis-

Branch, Patrick Duffy,

Crisis (GMHC), USA

tance Centre, Namibia

Horst Neuzner, Scott King

and Gregg Gonsalves

HIV i-Base, UK

Vuyani Jacobs

Francina Lusungu Nyirenda

www.i-base.info

Community Health Media Trust

Malawi Network of AIDS

(CHMT)/Beat It, South Africa

Service Organisations

Treatment Action Campaign

Legal Assistance Centre, AIDS

Rajiv Kae

(MANASO), Malawi

34 Main Road, Muizenberg

Law Unit, Namibia | www.lac.org

Nava Kiran Plus (NKP), Nepal

Artur Ovsepyan All Ukrainian

7945, South Africa

Paul Kasonkomona

Network of PLWHA, Ukraine

Treatment Action Campaign

Treatment Advocacy and Liter-

Olena Stryzhak All Ukrainian

HIV i-Base

(TAC) | www.tac.org.za

acy Campaign (TALC), Zambia

Network of PLWHA, Ukraine

3rd Floor, East Thrale House

Selby Mabele Treatment Action

Wim Vandevelde

44-46 Southwark Street

Treatment Advocacy and

Campaign (TAC), South Africa

Grupo Portugus de Activistas

London SE1 1UN, England

Literacy Campaign (TALC)

Lorraigne Matthys HIV and

Sobre Tratamentos de VIH/

www.talczambia.org

AIDS Diakonia, Botswana

SIDA (GAT), Portugal

ISBN XXX XXX XXX

Photography by
Wolfgang Tillmans

The worlds political and health

Many treatment activists

Community Health Media

leaders have committed to

have learnt the science and

Trust (CHMT) in South Africa

the goal of providing universal

treatment of HIV. Many of us

have produced treatment

access to HIV treatment for all

educate our communities on

literacy DVDs with an

who need it by 2010.

these issues using innovative

animated sequence of the

ways developed in other

viral lifecycle. TAC show how

But unless people with

communities. Activists and

they provide information to

HIV receive good quality

community members with

rural communities using songs

information about their

HIV learn through songs,

and role-plays. Nava Kiran

disease and their medications,

photos, booklets, pamphlets,

Plus (NKP) have translated

the full benets of HIV

games, posters, videos,

and adapted i-Base materials,

treatment will not be realised.

workbooks, plays, fact sheets,

produced for the UK, for

and formal training. All these

their community in Nepal. We

Good treatment information

things help build what we call

hope that groups starting

helps people with HIV to

Treatment Literacy.

new treatment literacy

to understand the critical

This report is from a global

experiences, borrow ideas,

importance of adherence to

treatment literacy meeting

and be inspired.

HIV treatment regimens, to

in held in Cape Town

make informed decisions,

programmes will use our

recognise the symptoms

organised by the Treatment

We believe that good health

of advancing HIV disease,

Action Campaign (TAC) from

outcomes can only succeed

and how to manage

South Africa and HIV i-Base

and thrive in places with

treatment side effects more

from the UK to critically

strong support for community

effectively when they occur.

review existing treatment

provision of health and

Informed patients and good

literacy materials, plan new

treatment education. We

treatment information can

collaborations to improve the

believe community treatment

help healthcare workers

quality of treatment literacy

literacy activists and

provide appropriate care and

curricula, and explore new

educators will be critical to

maximise the benets of their

methodologies for sharing

the success of ambitious

efforts and limited resources.

treatment information among

plans to increase treatment

diverse audiences and

access by 2010. We believe

multiple cultures.

that universal access to HIV

Treatment information also

helps activists to understand

treatment can never become

the focus of their advocacy,

a reality without us.

to ght for their rights, to take

a critically informed view of
new scientic ndings, and
to drive and inform good
treatment policies.