1. health and fitness
2. disease
3. aids and hiv

HIV in our lives
Information for people living with HIV/Aids,
their support groups and clinics
1
TAC activist
Runner for health
HIV and LGBTI Advocate
Tantaswa Ndlelana
Photo by Eric Miller
Mother of two, actively teaching tolerance
3
Acknowledgments
In our lives: Information for people living with HIV/Aids, their support groups and clinics.
Published by Treatment Action Campaign
122 Longmarket Street, Cape Town, 8001, South Africa
Tel: 021 422 1700. Fax: 021 422 1720
Email info@tac.org.za
Website: www.tac.org.za
December 2013
© Treatment Action Campaign
This edition of HIV in our lives is adapted from
the in our lives series, originally conceived by
Sipho Mthathi and TAC activists with Polly
Clayden from HIV i-Base.
This edition was put together by Polly Clayden,
Matt Sharp and TAC activists.
Thanks to Francesca Conradie, Eric Goemaere,
Gilles van Cutsem and Francois Venter for
review of this edition and everyone who has
contributed to the series over the years.
About i-Base
Attribution-NonCommercial-ShareAlike
CC BY-NC-SA
This license lets others remix, tweak, and build upon your work non-commercially,
as long as they credit you and license their new creations under the identical terms.
Project managed by Lieve Vanleeuw
Edited by Liz Sparg
Design by Design for development www.d4d.co.za
Photographs by Eric Miller and Samantha Reinders
Printed by Creda Communications
HIV i-Base is a London-based HIV treatment
activist organisation. HIV i-Base works in the
United Kingdom and internationally to ensure
that people living with HIV are actively engaged
in their own treatment and medical care and
are included in policy discussions about HIV
treatment recommendations and
access - www.i-base.info
About the photographs
Thank you to all the people who agreed
to appear in this book. Our intention was
to help bring HIV more into the centre
of our lives, rather than keep it hidden.
Contents
Aids activist
Runner for Health
Love for mother, for family
Involved in community structures
Lumkile Sizila
Photo by Eric Miller
Abbreviations used in this handbook
2
How to use this handbook
4
Our plan to fight HIV
6
A brighter future
8
The first day
10
1. Health, illness and OUR BODIES’ defence systems
12
Germs cause illnesses
Cells, tissues, organs and systems
Germs and our immune systems
13
14
15
2. What is HIV? What is AIDS?
20
3. Monitoring and managing HIV
26
The WHO stages of HIV
Blood tests
Diet and nutrition
27
28
29
4. HIV treatment
30
Taking effective treatment
Antiretroviral medicines (ARVs)
When to start ARVs
Adherence
Drug resistance
Drug side effects
31
32
38
44
47
48
5. Tuberculosis
52
Diagnosing TB in South Africa
Treating TB
Preventing TB
56
57
61
6. HIV complications
62
HIV complications of the mouth, ears and eyes
HIV complications of the skin
Other HIV complications
63
64
65
7. Pregnancy and HIV
70
Infant feeding – TAC’s position
74
8. Sexually transmitted infections
76
Risks of unprotected sex
Symptoms of STIs
77
78
9. Take control
80
Taking ARVs to prevent HIV
Safer sex
Disclosure
Attending the clinic
Support groups
81
82
86
88
89
TAC provincial offices
91
Glossary
92
Abbreviations used
in this handbook
NNRTIs
NNRTIs
NRTIs
NRTIs
aids
aids
acquired immunedeficiency syndrome
hpv
hpv
human papilloma
virus
ART
ART
antiretroviral
treatment
irs
irs
immune reconstitution
syndrome
ARVs
ARVs
antiretrovirals
iviv
intravenous
cmv
cmv
cytomegalovirus
ks
ks
Kaposi
sarcoma
d4T
d4T
stavudine
lft
lft
liver function
test
dna
dna
deoxyribonucleic
acid
mcc
mcc
Medicines Control
Council
fda
fda
Food and Drug
Administration
mdr-tb
mdr-tb
fdc
fdc
fixed-dose
combination
2
msf
msf
non-nucleoside reverse
transcriptase inibitors
RNA
RNA
ribonucleic
acid
nucleoside
reverse transcriptase
inhibitors
RTIs
RTIs
reverse transcriptase
inhibitors
SAHPRA
SAHPRA
South African
Health Products
Regulatory Authority
SANAC
SANAC
South African
National Aids Council
nsp
nsp
National
Strategic Plan
OIs
OIs
opportunistic infections
pcp
pcp
pneumocystis jiroveci
/carinii pneumonia
STIs
STIs
sexually transmitted
infections
PEP
PEP
post-exposure
prophylaxis
TAC
TAC
Treatment Action
Campaign
PIPI
protease
inhibitor
PN
PN
TB
TB
tuberculosis
peripheral
neuropathy
TOP
TOP
termination
of pregnancy
WHO
WHO
World Health
Organisation
multi-drug-resistant
tuberculosis
PrEP
PrEP
pre-exposure
prophylaxis
Médecins Sans
Frontières
R&D
R&D
research
and development
XDR-TB
XDR-TB
extensive drugresistant tuberculosis
3
How to use this handbook
This new edition of HIV in our lives contains
the most up-to-date information about medical
issues for people with HIV/AIDS in language
that is easy to understand. Learning about
HIV is sometimes like learning a new language.
Some new terms may be difficult to understand.
For this reason, we have included a glossary in
the back of the book.
We have updated and combined four existing
handbooks: HIV in our lives, ARVs in our lives,
Pregnancy in our lives and TB in our lives.
Many of the topics in each of these handbooks
are included in this new one. Much of the
information can be used as fact sheets for
support groups or clinics.
TAC believes people with HIV, and their
healthcare workers, should become familiar
with this information in order to be as
informed as possible. While information
about HIV treatment is provided here, all
treatment administration must be under
close supervision of your doctor or nurse.
Mother
Jazz singer
Activist
Journalist
Member of the TAC community
Mary-Jane Matsolo
4
Photo by Eric Miller
5
Our plan to fight HIV
We have come a long way from the bad old
days, when the government questioned whether
HIV causes AIDS and refused to provide us with
treatment. Even though we still have a long
way to go, we are now on the right path. Under
the leadership of Minister Aaron Motsoaledi,
South Africa has turned a new page in our fight
against HIV.
We now have the biggest HIV treatment
programme in the world. Most people who need
treatment are finally able to get it. Effective HIV
prevention measures, like condom distribution,
medical male circumcision and early testing are
all supported by the government.
But, even though most of our health policies
are now good, this doesn’t always translate
into better services in our clinics and hospitals.
In many provinces, clinics and hospitals
still regularly run out of important HIV and
tuberculosis (TB) medicines. In some provinces,
clinics are understaffed and equipment is
broken. Often, nurses and doctors are forced to
work under very difficult conditions.
Treatment Action Campaign (TAC) believes that
everyone has a role to play in helping to fix this
and keeping government accountable for poor
service delivery. If you live in an area where
TAC is present, you can consider becoming a
member. Or you can find out about your clinic
committee or local AIDS council and join that.
These structures offer a way for people to have
a say in how government responds to HIV, TB
and other sexually transmitted infections (STIs)
in our communities.
Local AIDS councils can report to district AIDS
councils, district AIDS councils can report to
provincial AIDS councils and provincial AIDS
councils can then report to the South African
National AIDS Council (SANAC). In this way,
complaints about healthcare in your community
can be communicated until they are dealt with
effectively.
All of these councils function according to a
plan, in the same way that a soccer team plays
a match with a specific strategy. South Africa’s
plan for HIV is called the National Strategic Plan
(NSP) on HIV, STIs and TB 2012–2016. If you
have access to the internet you can find this
plan at www.sanac.org.za/nsp.
The NSP aims to reduce new HIV infections by
50% by 2016, to make sure 80% of people who
need HIV treatment are getting treatment by
2016 and to reduce TB deaths and infections
by 50% by 2016. Meeting this target will not
be easy – but if we all get involved in our own
communities we will have a much better chance
of succeeding.
Local
AIDS
Councils
SANAC
District
AIDS
Councils
Anele Yawa
Treatment Action Campaign
Provincial
AIDS
Councils
6
Photo by Samantha Reinders
A brighter future
I am often asked why I have chosen to dedicate
my professional life to the treatment of HIV. It
is quite simple: it is amazingly rewarding. While
I know HIV infection still sometimes carries
a stigma, to me it is a disease with a good
prognosis. The change from an invariably fatal
illness to a disease that is easier to manage than
diabetes is, has been nothing short of a medical
sensation; a tribute to exceptionally talented
and hardworking scientists and clinicians.
We now understand how HIV infection works,
how the virus undermines the immune system
and how it reproduces. The understanding of
the HIV life-cycle has enabled us to formulate
medications to control replication. Once we
have the viral replication under control, the
HIV-infected person’s immune system returns
to as near normal as to make little clinical
difference; provided that they then adhere
to their medication. Add to that a dose of
advocacy, and now we have medication that
the state can afford.
Now treatment is so simple that first-line
treatment is one tablet, once a day. I have
had patients who have been so ill that I thought
they would not survive, but who are still in my
care ten years later. I have known children who
were diagnosed as infants and who are now
in university.
I remember a couple who came to see me.
The woman was infected with HIV when she
was young and she lost her first baby to HIV.
She went on to meet the man of her dreams:
a wonderful, caring man who loves his wife
and also happens not to be infected with HIV.
After being on treatment for years, she had a
normal CD4 count and an undetectable viral
load. Like many couples, they wanted a baby.
Needless to say, they were afraid that they may
have an HIV-infected baby. We discussed safe
conception and they decided to go ahead. After
a couple of tries, she fell pregnant. She said,
‘I love my husband and I will love my baby. I
will never miss a tablet.’ Their baby girl is now
in Grade 1. She does not have HIV. Her mom is
putting money aside for her daughter’s tertiary
education and is shocked at the cost of matric
dance outfits. But she is looking forward to
seeing her daughter dancing there in ten
years’ time.
But the other good news is that we have such
safe medication, with such low side effects
that in some countries we are now starting
treatment sooner. The latest World Health
Organisation (WHO) treatment guidelines
now recommend starting at a CD4 count of
500. So, we do not even wait for a person to
get any HIV- or AIDS-related conditions. My
hope is that, in my lifetime, mother-to-child
transmission will be eradicated and we will
have to rewrite the textbooks. Gone will be
the old days of deathly ill people presenting
to healthcare workers. All we will have to do
when we diagnose people with HIV is to give
them the tools to adhere to their therapy. And
AIDS will be a thing of the past.
AIDS
Dr Francesca Conradie
President of the Southern African HIV Clinicians Society
8
Photo by Samantha Reinders
Fatal
Disease
Easier to
manage than
diabetes
9
The first day
STEP 3
Perhaps you have just found out that you are HIV positive, and you are feeling
shocked and scared. Learning that you are HIV positive can change your life,
but there is a lot of help for you in South Africa. Here are a few steps that may
help you plan and structure your life, now that you have been diagnosed:
STEP 1
Take control!
Go on with your life as best you can. Stay as busy
as possible. Make a plan to get the best care and
treatment possible. Learning all you can about HIV
and the best treatment will give you more confidence.
STEP 2
Stay connected
to your clinic
You may have received information when you learned
you were HIV positive, but you may still have a
thousand more questions. Be strong and confident
about asking everything you are not clear about. For
example, you may have many questions about passing
HIV on to your family or partner. (Remember, you
will not pass on HIV by means of casual contact in a
household.) Questions about disclosing your status to
your partner or family can be addressed by your nurse,
doctor or counsellor.
10
Ask for help and support
from friends and family
Your family and friends are often the best people to
give you support. They know and understand you and
are there for you.
STEP 4
Join a support group
Getting support from peers (people like yourself) can
help you get through a difficult time. Your peers have
been down a similar road as you are going down now
and can provide support and guidance.
STEP 5
Stay healthy
Live as healthily as possible! Eat good nutritious food
and try to exercise. Limit the amount of alcohol you
drink and do not smoke. Make sure you monitor your
CD4 count regularly and start antiretroviral treatment
(ART) as soon as you need it.
Having HIV does not make you a second-class citizen. You have a right to
confidentiality: it is the law. Clinics are not allowed to discriminate against you.
Our government has issued a Patients’ Rights Charter that says: ‘Everyone has the right
to access healthcare services that include provision for special needs in case of … persons
living with HIV or AIDS patients’. Unfortunately, some healthcare workers still do not
comply with the Charter. Later in this handbook we give some suggestions of what you
can do if this happens.
11
Germs cause illnesses
In order to understand HIV, it’s important to
look at how our bodies work and how germs,
including HIV, cause illness. Our bodies are built
from different bits and pieces which, when
connected and working together, make us
full human beings who move, breathe, think
and so on.
1
HEALTH, ILLNESS
AND OUR BODies’
DEFENcE SYSTEMs
When you get sick you
might ask yourself:
Depending on how
you understand illness
and what causes it,
you might say:
We take our bodies for granted. We do not
think of our bodies as places where complex
processes occur to keep us alive. We are not
aware of most of the things our bodies do
naturally – how our hearts beat, how our blood
flows or how our lungs breathe air. Most body
processes happen without us feeling anything.
Our bodies are like silent machines that go on
with their business quietly and only alert us
when something is wrong.
So what has gone wrong now?
Well, my ancestors are angry, I must slaughter a goat
to appease them, then this pain will go away.
My blood is dirty, so I must get ibhotile (herbal mix) from my
sangoma/inyanga (traditional healer) and things will be better.
I will go to the clinic; perhaps they have
medication that can help me.
In this handbook, you will read about medicines that you will get from the clinic or hospital and that
have been thoroughly tested and proven to work. You will not read about traditional medicines or
other complementary medicines.
12
13
Cells, tissues, organs and systems
The cell is the basic unit of life. All life originates
from one cell or a cluster of cells. More
complicated living things – like animals and
plants – are made of billions of cells. Cells can
be compared to little bricks that, when put
together and connected by certain components,
build a full human being, like bricks can make
a house.
The cell is filled with a substance called
cytoplasm (a watery fluid) and a nucleus. The
nucleus is like a boss shouting orders at the bits
that do the work in the cell. While all cells have
similar parts, like the nucleus and cytoplasm,
different cells may have different parts,
depending on what their function is.
The deoxyribonucleic acid (DNA) of the cell
is kept inside the nucleus. DNA is the genetic
code of the cell. It contains all the information
necessary for the cell to function, like a
blueprint or recipe.
Human beings have many different types
of cells. For example, bones are made of a
particular type of cell, which is different from
the cells in blood, the stomach, nails or muscles.
A group of cells combined together makes a
tissue. A group or cluster of specific tissues
together makes an organ. Different organs
work together, assisted by various chemical
processes. This is called a system.
All the cells, organs, and
systems of the body must
work properly for a human
being to survive.
The heart is an organ that works as part of the
circulatory system to pump blood to different
parts of the body. Without this, we would
die. Lungs are organs that work as part of the
respiratory system to help us breathe. The
stomach is an organ that works as a key part
of the digestive system. This system helps our
bodies to process food we eat so that it can be
used as fuel for the different parts, including
cells. If the digestive system is not working
properly, the body cannot get enough fuel to
maintain the balance needed to keep it healthy
and alive.
cytoplasm
Germs and our immune systems
A germ, or a virus, is a very small organism
in our environment. It can only be seen by
a very special type of microscope. We are
exposed to all sorts of germs all the time.
There are germs in the air we breathe, the
water we drink, the food we eat and in our
surroundings. Some germs live in our bodies
for as long as we are alive. Some germs
constantly try to find an opportunity to
multiply and take over the environment.
Sometimes they do this in our bodies. Other
germs may be harmless, and a few may even
work happily together with our bodies, often
to keep other germs out.
Because there are so many germs around us, it is important
to prevent them from spreading in our bodies:
We should wash our bodies and hands
to limit the number of germs on our skin.
Germs grow in rubbish so it is important
to get rid of rubbish to limit the number
of germs in our immediate environment.
We need to find clean water to drink to
protect ourselves from dangerous germs like
bilharzia, cholera and others.
nucleus
nucleotides
DNA
cell
But even with all these measures, some germs can still make
their way into our bodies and make us ill.
The skin is the body’s biggest organ. It provides a natural barrier against germs that our bodies
would otherwise be constantly exposed to. When this natural barrier fails and germs enter our
bodies, the immune system responds in a coordinated and collective way to rid our bodies of
the germs. Without our immune system, humans would not survive very long on earth.
14
15
White blood cells form the main part of the
immune system. T-lymphocytes are a very
important type of white blood cell. CD4 cells
(or T-helper cells) are one important type
of T-lymphocytes. (You will read about CD4
cells again later when we explain how HIV
replicates itself.)
The immune system: our invisible protection
CD4 cell
lymph
nodes
white
blood
cell
antibody
germ
White blood cells are produced in the bone
marrow, in the middle of bones. They are
then released into the blood from there. Most
immune system cells are then kept in the lymph
nodes until they are needed elsewhere in the
body. Lymph nodes are widely distributed
throughout the body, and are the small lumps
or nodules that you can sometimes feel in
your neck, under your armpits, or in the crease
between your legs and your body.
The immune system performs a set of processes
to protect us and keep us alive. When white
blood cells (amajoni omzimba – soldiers of the
body) recognise a germ they make many copies
of themselves and attack the germ. This is why
lymph nodes often swell if there is an infection
in the body. Some people worry that they are
getting sicker when their lymph nodes swell,
but it is also a good sign that their immune
system is still able to fight.
The immune system works more or less like
a soccer team or an army. Each of the different
cells of the immune system has a special role
to play that is as important as all the others.
Co-operation between the cells is important,
otherwise certain steps in the response to kill
the invader will be missed and then things
can go wrong.
Here is a summary of the
processes that the immune
system performs to fight
a germ:
Once the white blood cells have identified
a germ, CD4 cells release chemicals that
communicate with all the other cells of the
immune system. (These cells are like cell
phones with unlimited airtime!)
Antibodies are tiny Y-shaped proteins that
attach themselves to the germ and destroy it.
This enables the immune system to fight off the
vast majority of all the germs it sees. The body
produces different antibodies for every different
germ. For example, an antibody against the
polio virus can only fight this virus. It cannot
fight the hepatitis virus. Most antibodies are
in the blood but some are found in fluids like
saliva, breast milk and vaginal fluid. This is
why there are also HIV saliva tests. They test
for antibodies to HIV in the saliva.
After the immune system has defeated a germ
invasion, the CD4 cells keep a memory of
the germ. This means that there will be large
numbers of CD4 cells that could fight that
specific germ if it infects the body again in
the future: memory cells help the body to fight
germs that it has met before more easily and
more quickly than it can fight new germs and
new infections. This is how vaccinations work
– we give the body something that looks like
the germ (for example, the measles germ) and
the immune system remembers it, so that when
your body is later exposed to the actual measles
germ, it easily kills it.
The immune system has to deal with new
germ invasions all the time and has to learn
new ways to respond to them. If the immune
system did not adapt to deal with new
infections, all humans would probably have
died a long time ago. Without the immune
system, our best attempts to keep healthy
would not be very effective.
The problem with HIV is that it is a
disease of the immune system. It attacks
the cells that are there to defend the
body against it. Although the body forms
antibodies to fight HIV, the immune
system cannot completely eliminate the
virus because HIV infects the immune
system cells directly. It’s a bit like tsotsis
putting their members into the police
force, to undermine it from within.
17
Different types of germs cause different illnesses
Some germs live in our bodies without causing
harm and some germs help our bodies. We refer
to these germs as ‘friendly germs’. For example,
there are bacteria that live in our stomachs and
assist with processing the food we eat and kill
other germs that cause harm. These include
the bacteria that are in yoghurt (Lactobacillus
bacteria). Other friendly germs live in a
woman’s vaginal areas and keep it acidic to kill
off other germs that might cause harm.
But most germs are not friendly. Given the
chance, most germs will multiply and make us
ill. For example, TB is very common in South
Africa, and many people carry the TB germ
inside their bodies. However, not everyone
who carries the TB germ is sick with TB – most
people with a strong immune system do not get
ill with TB. But if their immune system becomes
weak, for example if they have HIV or if they
are malnourished or have some stress in their
bodies, then the risk of becoming ill from TB
is much higher.
This does not mean that all people with TB
have HIV. It just means that it is more likely
for a person who is HIV positive and who has
a weak immune system to get ill from TB. This
is because TB is a very common illness in South
Africa and it takes advantage of weak immune
systems. Infections that do this are called
opportunistic infections (OIs) or thatha-machance illnesses.
Generally, germs are grouped into four groups:
bacteria, viruses, funguses and parasites. For
the treatment of diseases, it’s important to
know which germ group is making you ill.
Each treatment can only heal you for a specific
illness. For example, TB is a bacterial infection,
and the medication, fluconazole (also called
Diflucan) can only treat a fungal infection.
This means you cannot give fluconazole to
treat TB because a bacterial infection needs
antibacterial treatment. Similarly, antiviral
treatments only treat viral infections. They
will not work for bacterial or fungal infections.
In most cases, even different viruses (such
as HIV, hepatitis C or herpes) have different
treatments from each other.
There are illnesses that your body is generally
able to fight off and you won’t die or get too
sick if you don’t take medications to treat them.
There are also illnesses or diseases, like TB,
that can be cured if you take the appropriate
medicine. And there are illnesses that require
taking medication for the rest of your life, for
example, diabetes, hypertension and HIV. These
illnesses work differently and are caused by
different things. But they are all called ‘chronic’
illnesses, because they all last a long time,
or forever. Although chronic illnesses do not
yet have a cure, there are treatments for them,
which must be taken for life.
Antiretrovirals (ARVs) are a kind of antiviral
treatment. If taken properly and for life, ARV
medicines stop HIV from multiplying and keep
it under control in our bodies.
Activist for equal rights for all
Committed, helpful, friendly and willing
Pupa Zukisa Fumba
18
Photo by Eric Miller
19
2
What is HIV?
What is AIDS?
When asked to explain what HIV is,
some will say ubhubhane, ugawulayo,
or amagama amathathu. Many of us know it
as the mysterious illness that ‘took away my
mother, my child, my cousin who was paying
for my school fees’, as an ‘idliso (poison) from
my jealous neighbour’ or as the ‘mysterious
illness that is making me think and feel weak’.
We all understand illness differently. However,
one thing is certain – because of HIV, millions of
people have died.
HIV is a very small germ,
called a virus. It can only be
seen by a very special type of
microscope. HIV is transmitted
by blood, semen, vaginal
secretions and breast milk.
When you test HIV positive it means you
have HIV antibodies – specific proteins of the
immune system that seek out germs and mark
them for destruction. This is what happens to
most germs when they come inside the human
body – the body creates antibodies after it is
infected with a foreign virus. The body takes
up to three months to develop these HIVspecific antibodies after infection, although
for most other viruses the body develops
antibodies much sooner. Usually, if a germ
comes into the body, the immune system will
quickly control it. However, HIV antibodies do
not work very well.
CD4 cells have things on their surfaces called
CD4 receptors, which are like the ‘door locks’ of
the CD4 cells. Nothing can come inside the CD4
20
cell unless it has a ‘key’ that can fit into the CD4
receptor. HIV has a ‘key’ on its surface called the
gp120 that fits the CD4 receptor and this is how
it gets into the CD4 cell.
A CD4 cell count provides a marker of the
strength of your immune system. A normal CD4
count is above 600. However, HIV targets and
destroys the CD4 cells. As HIV takes control of
the body, over a number of years the CD4 cell
count falls.
Everybody is different – some people’s CD4
cell count falls quickly; for others this falls more
slowly. On average, it takes six to eight years
after being infected with HIV before someone
needs treatment for HIV; but everyone is
different. That is why it is important to measure
your CD4 count at least once a year before
starting treatment.
If you have a CD4 cell count below 200, it
means that you have developed Acquired
Immune-Deficiency Syndrome (AIDS), which
means your chance of getting sick is very high.
Even if your CD4 count is between 200 and
350, you have a higher risk.
If you can, you should start ARVs before you
have a low CD4 count, so that you can prevent
your body from getting very sick. In South
Africa the guidelines are to start ARVs when our
CD4 count is 350 or below (see the section on
HIV treatment, page 30). When your CD4 cell
count is low, your immune system is damaged,
but with treatment the virus can be controlled.
Many people can also restore their immune
system even if they start treatment late.
21
These are the steps
of the HIV lifecycle
1
HIV attaches to a CD4 cell
by binding the CD4 receptor
(like putting a key into a lock).
2
How the virus
actually multiplies
inside our bodies
5
The HIV DNA is integrated into
the infected cell’s DNA by using
the integrase enzyme (like
mixing cocoa into a cake batter).
6
When the infected cell is activated,
the HIV DNA is copied into
messenger RNA, which is now a
long single strand of genetic code
or raw material on how to make a
new virus (like a recipe).
2.HIV also attaches to one of two
co-receptors known as CCR5 or
CXCR4 (the second lock).
rna
CD4 receptor
CD4 receptor
hiv/cd4
dna
Hiv
Cell
Hiv
Cell
hiv/cd4
dna
CD4 cell
CD4 cell
CD4 cell
CD4 cell
3
Hiv
Cell
CCR5 / CXCR4 receptor
8
The viruses push out of the
infected cell in a process called
‘budding’ and soon break free
of the infected cell.
HIV fuses with the CD4
cell (like two soap bubbles
becoming one). It empties its
contents – virus ribonucleic
acid (RNA) and its enzymes –
into the CD4 cell (like taking
off a coat).
Hiv Dna
HIV
cell
reverse
transcriptase
enzyme
4
Rna
CD4 cell
Hiv cell
The HIV genetic code (RNA)
changes into HIV DNA by
using the reverse transcriptase
enzyme (like translating a
plan from Zulu to English).
Sets of raw material and protein
products for a new HIV virus come
together near the surface inside the
CD4 cell, and the virus is assembled.
hiv/cd4
dna
HIV
cell
CD4 cell
CD4
cell
Dna
7
9
CD4 cell
HIV
cell
Thousands of new copies of HIV
are made in each CD4 cell and
these new viruses go on to infect
other CD4 cells in our body.
The CD4 cells become like large
factories for HIV.
The immune system tries to defend the body
by making more CD4 cells. However, this mostly
creates more cells for HIV to infect. Over time,
there are so few CD4 cells to defend the body
against germs that opportunistic infections
(OIs) take over. This stage of HIV infection is
called AIDS.
If your CD4 cell count is under 200 your
immune system is damaged and you may
develop OIs, because the germs that cause
the infections have the opportunity to take
hold when your immune system is damaged.
OIs are rare in people without HIV or in people
who have higher CD4 counts because they are
on ART.
Many CD4 cells ‘go to sleep’ (become inactive)
after they are infected and these sleeping cells
cannot be ‘seen’ by ARVs until they ‘wake up’
(become activated). Some of the cells may
sleep for more than ten years! With millions
of sleeping cells in the body, you can see one
reason why HIV cannot be wiped out. That is
also why, for now, the best way that we know
to control HIV is to take ARVs for life. (See
section on HIV treatment, page 30).
ARVs help you become healthier. But it is
important to remember that ARVs will not
destroy all the HIV in your body. Instead,
they keep the amount of HIV so low in your
blood that your immune system can recover.
Antibodies to HIV will always remain and the
test result will always be positive, even if you
take ARVs.
24
It is important to keep your immune system
healthier by attending a clinic regularly to be
examined and treated for other germs and
infections. Some infections can be prevented
before they occur. Treating infections speedily
keeps HIV reproduction under control, as long
as the HIV has not progressed too much in the
body. But if the HIV is more advanced (your
CD4 cell count is lower than 350), you need
to get ARVs.
Some HIV-positive people spend all their money
going to a healer (umthandazeli) or a so-called
doctor who has found some ‘miracle cure’.
There is currently no known
cure for HIV/AIDS. If there was,
the world would know about
it! Scientists are working very
hard to find a cure for HIV/
AIDS and it is possible that
one will eventually be found.
But until then, we have a right
and responsibility to expose
those who misinform us and
who exploit the desperation
of many people living with
HIV/AIDS in our communities.
Photo by Samantha Reinders
25
It’s important to understand that HIV is a
chronic, lifetime condition. There is currently
no cure; however researchers are performing
studies that may one day lead to a remission
(temporary recovery), or even a complete cure.
If you are HIV positive, your doctors will take
blood tests to monitor your health status and to
guide your decision-making. It is important for
you to recognise signs and symptoms – clues
that your body gives to tell you that you are
sick. You should report anything that feels new
or different in your body
to your doctor.
The WHO stages of HIV
3
Monitoring
& Managing Hiv
The World Health Organisation (WHO) has developed a system of stages to help doctors
monitor the progression of HIV and its effect on the immune system. The stages are
based on your medical history, opportunistic infections you may have had in the past,
other medical complications, and other symptoms.
PRIMARY HIV INFECTION
The first stage where there may be no symptoms but there may be an immune
response due to the body’s first reaction to HIV.
STAGE 1
No symptoms except swollen lymph glands.
STAGE 2
Moderate, unexplained weight loss and other non-life-threatening conditions, such as
tonsillitis, ear infections and certain skin conditions.
STAGE 3
Unexplained, severe weight loss and less severe opportunistic infections that may be
treatable.
STAGE 4
‘Wasting’ syndrome and serious infections like TB, due to a weakening of the immune
system. This stage is considered to be AIDS.
27
Blood tests
Diet and nutrition
CD4 test
Viral load test
The viral load test is also a blood test that
measures the numbers of HIV (the ‘viral load’)
in a specific amount of blood taken out of
your arm, using a needle. The test is measured
in very high numbers, or sometimes in a
mathematical number called a logarithm.
The CD4 test is one type of important blood
test used to monitor HIV. It measures CD4
T-cells from a specific amount of blood taken
out of your arm, using a needle. It is important
to have this test done regularly, in order to
make the correct decision about when to
start ARVs.
The viral load test measures the level of HIV in
your blood plasma, and tells how effectively
your ARVs are working. If you are not on ARVs,
anything over 10 000 copies would be worrying,
and over 100 000 would be seen as very high.
If you are on ARVs, the viral load should be
‘undetectable’ (less than 400 or even less than
50), meaning there is practically no HIV in your
blood. (Remember, the HIV still lives elsewhere
in your body.) Viral load is the most important
test once you are on ARVs.
The South Africa National Department of Health
guidelines say you are eligible for ARVs when
your CD4 count is 350 or below. People who
are at WHO Stage 4, or who have severe HIVrelated disorders, including TB, are also eligible
and so are all pregnant women. When you start
ARVs, your CD4 count will rise, as your immune
system recovers.
HIV
HIV
HIV
HIV
Before AIDS was recognised in the US, there
were already cases in Uganda known as
‘slimming disease’. Loss of weight is a central
part of HIV and its effect on the body. HIV
causes absorption problems in the stomach
and intestines, where our food is digested. This
means there is less fuel (food) for the immune
system, which also gets slowly damaged by
HIV. HIV also uses up the body’s protein instead
of fat, so you lose important muscle tissue that
you need when you are sick. So, HIV causes
poor nutrition and poor nutrition makes HIV
worse – a vicious cycle.
By eating correctly or as well as possible, you can maintain a healthy
body weight. Here are some tips on how to maintain good nutrition:
• Eat foods you like eating. Eat the
same foods you have always eaten.
• Eat cooked vegetables. They are easier to eat than raw vegetables.
• Make meals sociable occasions.
Eat with your friends and families.
• Liquid and soft foods (mageu, amasi) are easier to swallow.
• Eat at least three meals a day.
• If you have diarrhoea, continue
to eat foods that do not irritate
your stomach.
HIV
HIV
HIV cell
HIV
• Take your time when eating. Relax.
HIV
HIV
•
•
HIV
HIV
HIV
white
blood cell
red
blood cell
28
high viral load
If you have little appetite, eat small amounts of food throughout the day. Eat with your fingers if you
feel weak.
Mix vegetable oil, margarine or peanut butter into porridge.
• Drink plenty of water, especially
if you have diarrhoea.
•
Get advice about your own diet
and nutrition from your clinic. Talk
to your clinic about specific problems with your diet.
low viral load
29
Taking effective treatment
4
hiv treatment
At this time, ARVs are the only
treatment known to be effective
in directly slowing down HIV
replication. If they are used
properly, ARVs can dramatically
prolong the length and quality
of life of people living with HIV.
Remember, even after the ARVs
make you feel better, you must
continue to eat well and look
after yourself. Most importantly,
you must continue to take the
medication!
No herbal or other remedies have been shown
to improve CD4 counts or any other significant
part of the immune system in a way that can
stop HIV. Some so-called immune boosters may
even make the effects of HIV worse. They can
30
lead to an increase in the amount of virus in
your body.
It is always best to ask your traditional healer
how the traditional medicine works and for
which condition it is used, just as you should
ask your nurse or doctor about medicines you
receive at the hospital.
Some traditional medicines and herbs do relieve
symptoms of certain illnesses. But if you are
taking ARVs you must be careful about taking
traditional medicines at the same time, because
the traditional medicines may interact badly
with the ARVs – even if you have used the same
traditional medicines before and found them
to work. There are studies looking at some
traditional medicines and herbs. These studies
will show whether the treatments work and if
they are safe for people with HIV.
TAC is working to build stronger relationships
with good traditional healers.
31
Antiretroviral medicines (ARVs)
You have read about how HIV uses CD4 cells
to multiply. You have also read about how ARV
medicines are the only treatments that are
known to stop the multiplying process of HIV
and to decrease the amount of HIV in the blood.
ARVs allow the immune system to recover so
that it can fight infections. In South Africa there
has been huge progress in getting ARVs to over
a million people.
One of the indications that HIV is progressing
in your body is weight loss. One of the first
signs people report over the first six months
of ARV treatment is that their weight increases
and they also feel much more energetic. This is
a good thing, as a healthy body weight is
important. Remember to monitor your diet and
get the best nutrition from the foods you eat.
Another good effect of ARV treatment is that
over the period of a year, your CD4 count will
probably rise. If you started ARVs when you
were already sick, you will be regaining your
health and will feel better. Rebuilding your
CD4 count is generally a slow, steady process.
Sometimes it takes a long time to build up,
but any CD4 increase is good and you are
still benefitting from treatment. Even if you
start with a CD4 count below 50, which is
very low, you could still regain enough of your
immune system to recover from many HIVrelated illnesses. If you use ARVs at the right
time and in the right way, you should stay well
for a long time.
When you have just been infected with HIV,
viral load levels are very high, and your body
fights back and brings the levels down much
lower; but, over time, it increases again. After
starting ARVs, your viral load will go down. It
drops really quickly, even after the first few
days or weeks of treatment. The viral load test
is used after you start treatment to check that
the drugs are working. The test measures how
much HIV is in a sample of blood. However,
the healthcare worker will generally only
check after six months, as the viral load test
is expensive. If your viral load is brought down
to ‘undetectable’, ‘below detection’ or ‘lower
than detectable limit’ on the test (less than
50 copies of HIV per millilitre of blood is ideal)
and if you continue to take your medications
correctly, your treatment can stay the same
for a long time. It is important to continue your
treatment as HIV is not cured; it is only slowed
down and reduced.
Noncedo Nokuthenjwa Bulana says:
‘My doctor took blood for a CD4 count
and found that it was 75. The next time
he took it, it was even lower, at 61.
He started telling me about ARVs but
I decided that I did not want to take them.
I told the doctor this and he suggested I join
a support group of people already taking
32
ARVs. I joined this support group and saw
and listened to others taking ARVs. They were
feeling great. I then told my doctor that I was
ready to try. My CD4 count is now 271 and my
weight has increased from 47kg to 73kg. Since
then, I’ve felt healthy, can see better, and have
written this story for you today.’
If your viral load is not below detection after three to six months on ARVs,
it means there is a problem and HIV is multiplying. This can happen for
several reasons:
The most common reason is when you don’t take your ARVs correctly (you have
been skipping some pills) or if you stop taking your ARVs.
Viral load can also be high if the ARVs do not stay in your body because of diarrhoea
or vomiting or if you are taking another medication that is fighting the ARVs.
If you haven’t been taking ARVs well for some time, your viral load might be high
because HIV has become resistant to ARVs (you can read more about this in the
section on adherence on page 44 and the section on resistance on page 47).
In South Africa, our guidelines say that we
should take a viral load test before we start
treatment, then every six months after that,
and then once a year. As the tests are
expensive, new research is currently being
carried out to develop tests that will be just as
good as the ones we have now but that are not
so expensive or difficult to run.
How ARVs work
After HIV has entered the body, it makes
billions of copies of itself every day. The
immune system does the best job of fighting
the invasion for years after the body has been
infected. But after some time, because HIV is so
persistent, the immune system loses the battle
and needs help.
After starting ARVs, your
quality of life improves,
because your immune system
becomes strong and you are
not sick all the time. You can
get back to your everyday
duties and you may be able
to go back to work!
The ARVs create all sorts of obstacles that make
it difficult for HIV to multiply. If the ARVs work
really well for you, then your nurse or doctor
will say your viral load is undetectable. As the
viral load goes down, most often the CD4 goes
up and you will start to feel better. This makes
many people feel confused when they go to
the doctor and their viral load is undetectable
– they think they have been cured. Remember,
an undetectable viral load does not mean you
are cured. There is still HIV in your body. The
viral load test only measures HIV in the blood.
It does not measure HIV hiding in other cells in
the body.
33
ARV drug classes
ARVs are grouped into different families, called
‘classes’. You will become familiar with the
names of ARVs and their classes as you read
this handbook.
To understand how the drug classes work, let us
use the example of a family. In the Makhwenkwe
family, there are grandparents, aunts and
uncles, their children, and so on. Even though all
of them belong in one family, they are different
people who are called different names and who
like and do different things. Some members
spend time together and get on well, while
others do not.
The same is true for ARVs. All of them have
one goal, to fight HIV, but they all have slightly
different mechanisms to achieve that goal.
Also, while most ARV ‘family members’ can
‘spend time together and get on very well’,
some do not. For example, we do not use the
ARVs called AZT and stavudine (d4T) together.
(You can read more about these ARVs on page
40 and about drug resistance on page 47.)
ARVs and HIV enzymes
You have read about the steps in the HIV
multiplying process and the HIV lifecycle.
HIV has the ability to infect human cells and
multiply itself using enzymes. These include
reverse transcriptase enzyme and the protease
enzymes.
An enzyme is a type of protein that makes a
process happen, usually much quicker than it
would otherwise. Maybe you have baked bread
before. We can use the example of yeast to
explain what an enzyme is. You mix flour with
water to make bread dough. Without yeast,
you can leave the dough there for a long time,
but it will not rise. But if you add yeast, in a
short time the dough will undergo a process of
fermentation and rise. Then you can bake the
bread. The yeast is a type of enzyme; it makes
a process happen, faster. The HIV also has
enzymes that make it work more quickly, so it
can infect more cells.
ARVs stop HIV from
growing by disturbing the
HIV enzymes. In this way
they work to stop the virus
from multiplying successfully.
We usually take a combination of three ARVs
instead of just one, because one or even two
ARVs are not enough to give the greatest
benefit when you take ARVs for lifelong
treatment.
Reverse transcriptase inhibitors (RTIs)
The HIV drugs that interfere or ‘inhibit’ the
process called reverse transcription are called
reverse transcriptase inhibitors (or RTIs).
There are three major types of RTIs: nucleoside
RTIs (NRTIs or ‘nukes’), non-nucleoside RTIs
(NNRTIs or ‘non-nukes’) and nucleotide RTIs
(like tenofovir).
If you miss doses of your
drugs it is like leaving a gate
open. The HIV gets a chance
and before you know it, a
whole umhlambi (a herd
of HIVs) is inside your field
grazing happily and destroying
your maize. This is an example
of how you get resistance
to ARVs.
Protease inhibitors (PIs)
Drugs from the family that stop the protease
enzyme from working are called protease
inhibitors (PIs). Protease inhibitors included
in the South African guidelines are lopinavir
+ ritonavir, also called Aluvia (a combination
of the two drugs; the ritonavir boosts the
lopinavir in the blood) and atazanavir +
ritonavir.
Integrase inhibitors
Bread undergoes
a process of
fermentation and
rises when you
add yeast.
Resistance
Other newer drugs that stop the integration
enzyme are known as integrase inhibitors.
Raltegravir is the only one currently available
in a small number of cases in the public sector
in South Africa.
Entry inhibitors and fusion inhibitors
A whole umhlambi inside
your field grazing happily
and destroying your maize.
Most drugs from one family of drugs are crossresistant to drugs from the same family. This
means that if you are resistant to one drug
it will also stop another drug from the same
family from working. For example, nevirapine
and efavirenz are both NNRTIs. If you get
resistance to nevirapine then efavirenz will
not work. If you get resistance to efavirenz
then nevirapine will not work.
Finally, there are several drugs that are only
available in the private sector (and not used
as much as the others in most countries) that
prevent HIV from entering and fusing into the
CD4 cell. These are known as entry inhibitors
and fusion inhibitors.
34
35
Do the drugs really work?
YES!
In every country that uses
ARVs, AIDS-related deaths
and illnesses drop dramatically.
Treatment works for women,
men and children. It works
no matter how you were
infected with HIV – whether
this was sexually, vertically
(that is from the mother
to the child), through
intravenous drug use (when
a person injects the drug)
or by blood transfusion.
The ARVs that you get from your clinic or
hospital have been studied and tested very
carefully. This research tries to make sure that
the drugs are as safe and effective as possible.
A whole process must be followed before the
drugs can be given to humans. The process
has to be properly documented before these
medicines are registered in a country.
Father
Volunteer
Activist
Vuyani Mngqete
Community leader
Living in Site C, Khayelitsha
Photo 36
by Eric Miller
This process is referred to as research and
development (or R&D). Most of the companies
that produce ARV treatment are from the
United States and Europe. So, most of the
ARV drugs we use were first approved by
the Food and Drug Administration (FDA),
an American regulatory body, and, later, by
our own Medicines Control Council (MCC).
Our MCC will soon be replaced with the new
South African Health Products Regulatory
Authority (SAHPRA).
These regulatory bodies are set up to make
sure no drug is made available to the public
without scientific proof of the safety and
effectiveness of the drug. This is to guard the
safety of people. Similar strict standards apply
in different countries and any company that
wants its medicine to be approved must stick to
these standards.
ARV combinations using three or more drugs
have now been used in some countries for over
15 years. Some of the individual drugs have
been studied for even longer. The length of time
that any combination will work depends mainly
on HIV resistance. This depends on maintaining
your viral load at undetectable levels. If your
viral load stays undetectable, you can use the
same combination for years.
Aids activist
Runner for Health
Love for mother, for family
Lumkile Sizila
Involved in community structures
37
When to start ARVs
Now that there are treatments for HIV, taking
HIV drugs exactly as prescribed will reduce the
virus in your body to tiny amounts. This lets
your immune system recover and get stronger
by itself – an important reason to know whether
you are HIV positive. If you wait a long time to
start treatment, it is harder to treat HIV and it is
more dangerous for you. You should test for HIV
at least once a year, so you know your status
and can start ARVS in time.
At some point, all HIV-positive people will
need treatment. People with HIV should start
treatment when the CD4 count is 350 or
below, if they have severe HIV-related illnesses
such as TB or if they are pregnant. The need
to start treatment can vary from person to
person, because HIV infection progresses at
different rates in different people and their life
circumstances are different.
CD4
38
500
Starting treatment
Our guidelines say: ‘It is
mandatory that patients
are started on treatment
within seven days after being
assessed as eligible for ART’.
If you are very sick or pregnant you might
need to be fast-tracked. The guidelines add
that people must have treatment literacy and
adherence support when they start. Make sure
that your clinic provides this or refers you to a
community group (see page 89).
There is strong evidence that keeping virus
levels low by starting HIV treatment reduces
the possibility of transmission of HIV from
person to person. Because of this, WHO is now
recommending that ART should be offered to all
HIV-positive people with HIV-negative partners.
The latest World Health
Organisation (WHO) treatment
guidelines now recommend
starting at a CD4 count of 500.
If you have only recently been diagnosed HIV
positive, you might need to deal with that first.
Make sure you have the support you need.
Remember – it is your right to ask as many
questions as possible until you are satisfied with
the answers.
Get useful information from other sources,
including friends, healthcare workers, support
groups, newsletters, helplines and the internet.
Even if you are well, it is still a good idea to get
to know something about treatment before you
need it. This is important if your CD4 count is
falling, or if you have a high viral load.
You are the person who has to take the pills
so you need to understand all about them.
Ask your nurse or doctor to tell you about the
different drugs that you will take. You should
understand the risks and benefits of each drug
you take. (See page 48 for more about drug
side effects.) If you are lucky, you will get to
take a fixed-dose combination (FDC) where the
different medicines are all put in one pill.
While your CD4 count is above 350, you still
have a good immune system. If it is below 350,
you are at a higher risk of infections that cause
diarrhoea and weight loss. If your CD4 count
falls below 200, your risk of developing OIs
increases. If it falls below 100, then your risk of
serious illnesses increases even more.
today, maybe only next month, but eventually
you will have an accident. A low CD4 count
does not mean that you will definitely become
ill, but it is much more likely. Most of the drugs
used to treat the other HIV-related illnesses
can be more toxic (poisonous) and difficult to
take than ARVs. Although you may be worried
about using treatments, HIV/AIDS is a very real
and life-threatening illness. Illnesses that occur
at any time when your CD4 count is below 200
can be fatal.
CD4
350
good immune system
higher risk of infections
200
risk of developing
OIs increases
100
risk increases even more
You should start the drugs when you feel ready,
but don’t wait too long. It is like driving a car
with no brakes; maybe you will have an accident
39
What drugs should you start with?
As part of your discussions in preparation for
treatment, your nurse or doctor will ask you if
you have ever taken any ARVs before.
It is given as a single, once daily ARV pill that
contains the three drugs. This is called a fixeddose combination or FDC.
Remember, some people might have
participated in research trials, where certain
ARVs were being tested. Some women may
also have used ARVs before, for example,
during pregnancy or while in labour. It is very
important to tell your nurse or doctor this
before you start your treatment.
Occasionally first-line treatment fails. These
ARV regimens (treatments) are recommended
in the South African guidelines as second-line
therapy in adults:
If you are ‘treatment naive’ or ‘drug naive’, it
means that you have never used any ARVs
before. This means that any of the available
drugs should have the best chance of working.
But, if you have previously used a certain
combination of ARVs and you stopped because
your trial ran out or something went wrong,
HIV could have become resistant to those
ARVs. If your doctor later prescribes the same
combination, it might not work for you again, so
you need a different combination of ARVs.
The first time you use ARVs is the time your HIV
is most susceptible (open) to the drugs and,
thus, they are likely to work best the first time.
This ARV regimen is recommended in the South
African guidelines for adults who are starting
first-line therapy:
efavirenz (EFV)
+ tenofovir (TDF)
+ emtricitabine (FTC)
40
TDF (if previously on d4T)
or AZT (if previously on TDF)
+ 3TC + lopinavir/ritonavir
or atazanavir/ritonavir
Even more occasionally, second-line treatment
fails, and a third-line regimen is required. In
these cases it becomes more complicated
and you will need to take newer drugs like
raltegravir, darunavir or etravirine. You will need
to have extra tests to see which drugs will work
for you and your regimen will probably be more
than three ARVs.
Some people are unable to take the
recommended drugs (called ‘contraindication’).
For example, tenofovir should not be used if
you have significant kidney problems. A routine
blood test will tell you this.
Also, people who take medicines for severe
mental conditions, such as psychosis and
schizophrenia, should not take efavirenz but
can take nevirapine as a substitute.
In South Africa, the Department of Health is
phasing out a drug called stavudine (d4T)
and replacing it with tenofovir. Stavudine was
associated with very few side effects in the
first few months, but it caused trouble after six
months. People experienced strange changes
in fat distribution – they would lose fat in their
faces, arms and legs, called lipodystrophy or
lipoatrophy. Many people experienced burning
in the feet, and occasionally, it caused a lifethreatening build-up of acid in the blood.
Due to these side effects, doctors try not to
prescribe d4T unless they have to; they prefer
to prescribe tenofovir. In rare situations, doctors
use d4T for brief periods, such as when people
are very ill, or where tenofovir is not available.
All patients on d4T should receive very careful
counselling about the possible side effects, and
should change to tenofovir or another drug if at
all possible. Our guidelines recommend that use
of d4T is phased out in all but very rare cases.
Whether you use first-, second- or (very
rarely) third-line regimens will depend on
your discussions with your nurse or doctor,
the choices of drugs available, your previous
health conditionan whether you have any
prior drug resistance.
Noncedo Nokuthenjwa Bulana says:
‘I did well on my first ARV combination for
three years. I did all the right things, took my
treatment on time and attended my support
group to keep informed.
Then I started feeling forgetful and restless all
the time. My doctor did my viral load and CD4
count to check if everything was okay. The
results showed that the virus was getting strong
again in my body. My viral load was up and I
was starting to feel unwell. I was confused.
My doctor asked me whether I had been taking
other medicines that might have caused a
bad interaction with my ARVs. Sometimes
if you take different medicines at the same
time, they can undermine each other’s
effectiveness. This is called drug interaction.
When certain medicines you take undermine
the concentration of ARVs in your blood, this
can give the virus a gap to multiply because
there is not enough ARV medicine in the body
to block this.
Sometimes even if you do everything exactly,
the virus can still become resistant to your
combination of medicines, which means you
must be changed to another one. My clinic
changed me to an effective second-line ARV
regimen. I know I must be adherent to
this regimen.’
41
Late HIV diagnosis and low CD4 counts
Which ARVs do we use together?
The best combinations always include
at least three different ARVs from at least two
different families, and often two or three drugs
are included in one pill. In South Africa, our firstline FDC contains three ARVs.
Your doctor will discuss with you which drugs
are right for you and most likely to get your viral
load undetectable. If you have taken HIV drugs
before, this will affect the combination. Often, if
you get bad side effects with one drug, you can
switch to another.
NRTI
NRTI
Combinations are usually two NRTIs, plus either
an NNRTI (usually first-line treatment) or a
boosted protease inhibitor (usually secondline treatment). (See the section on ARVs and
HIV enzymes on page 34.) The best results
from clinical trials have been achieved by using
combinations based on this formula. This is
reflected in our national guidelines, the WHO
guidelines and other treatment guidelines.
If you are not using an NNRTI as the third drug,
you will use a protease inhibitor (PI), boosted
by ritonavir. This includes lopinavir (which has
ritonavir inside the capsule) and atazanavir.
Using a small dose of ritonavir in these
combinations provides higher and more stable
drug levels (boosting).
NNRTI
OR
Boosted
PI
Generic medicines work!
A ‘generic’ product is a copy of an original
product and is cheaper than the original
product. Some people are suspicious that
generic drugs are not as good as the original
drugs.
Generic manufacturers, like originator
manufacturers have to stick to regulations
to ensure the quality of their medicines. If
they do not qualify with these, their drugs
will be deregistered or not registered at all.
However, generic drugs are just as good as
drugs from the original manufacturers; they
have exactly the same amount of active
ingredients. The companies that manufacture
the generic drugs study the finished product of
the originator manufacturer and analyse all its
contents to identify the main active ingredient.
From this, they can use certain processes to
make the same drug with the
same effectiveness.
Generic medicines are manufactured in several
countries, including India, Brazil, Thailand and
South Africa. The lower cost of manufacturing
in these countries is one of the reasons that
they can be produced at lower prices than the
originator drugs. This means that more people
can be treated for the same money. However,
there are still several new ARVs that do not
yet have generic versions that we need in
South Africa.
42
Some people only find out they are HIV positive
when they become very ill. This often means
starting treatment straight away, especially
when the CD4 count is below 100. Many people
in South Africa only start treatment when they
have a very low CD4 count.
to start treatment. Even with a dangerously
low CD4 count, you still have a good chance
that the treatment will work, if you follow your
regimen carefully – especially if you are not
yet very ill. If you have a very low CD4 count
you will be fast tracked to start treatment
immediately.
If you only discover you are HIV positive when
your CD4 count is very low, it is not too late
Immune reconstitution syndrome (IRS)
When you start ARV medications your immune
system gets a chance to recover, even at a
low CD4 count. But sometimes, if you start
treatment with low CD4 counts, a condition
called immune reconstitution syndrome (IRS)
may result.
immune system is pushing out all the germs
that have built up. Most of these infections
can be treated and it is not a reason to believe
your ARVs do not work, or that these infections
are ARV side effects. IRS improves after a few
weeks on ARVs.
IRS is when germs in your body become
unmasked and then killed off suddenly by your
immune system, and this may make you feel
worse after starting ARVs.
The most important thing to
remember is that if you notice
any problem after starting
ARVs, you must go to your
clinic and have it checked.
You could also get an opportunistic infection.
It’s like getting a thorn under your skin – pus
comes up and its gets red and sore, and the
thorn is pushed out. In the same way, your
43
Adherence
Adherence means sticking to something. When
we are talking about ARVs it is very important
to take the drugs every day and as close to the
same time of day as possible.
This makes sure that the appropriate levels of
the drugs get into the blood stream and then
go on to target HIV. If one or two doses are
missed then the appropriate level of drug in the
blood goes down and therefore it will have less
chance of stopping HIV from multiplying. This is
the time that HIV can change itself, or mutate,
developing resistance to the drug that used to
be there to stop it. This is why it is critical to
stay as close to your regimen as possible. If you
find that it is difficult to take your medications
at the same time every day, ask for help.
If you occasionally forget to take your pills,
don’t panic. If you remember that you have
missed a dose, take it as soon as you remember,
then try and get back on your regular dosing
schedule.
daily
pill chart
Nearly everyone misses doses from time to
time. If you miss one dose now and then, it
is not the same as missing a dose every day
or every week. Aim to take your pills as close
to the right time as possible, but don’t beat
yourself up about it if you make a mistake.
It gets easier!
Did I take my dose today?
1
Day
Morning
Evening
How have
I felt over
the last
two days?
Some adherence tips:
•Get all the information about what you need
to do, to prepare for treatment. Find out:
How many pills must you take?
How big are they?
How many times a day must you
take them?
Are the pills taken with or without food?
How should the pills be stored?
•Try to take your pills in the same place
every time.
•Plan for being away from home. Take extra
pills if you go away.
•Keep a small number of pills in a cool place
in a friend’s house in case of emergency. Replace your emergency stock so it doesn’t
get old.
•Make taking your pills part of your daily
routine.
•Ask for help from your friends or family
to remind you to take your pills on time.
•Tell your clinic or hospital if you have side
effects. There are some medications that
can help with side effects.
•If you are in a support group or if you know
other people on ARVs, ask them for help.
•Use an alarm or beeper to remind you
of your doses.
•Go to your clinic as soon as you have any
side effects.
44
•Ask for a treatment counsellor at your clinic.
Cut this page out, photocopy it and
use the chart to help you to keep track
of your medication and how you feel.
Name
Date of day 1
2
3
4
5
6
7
8
9
10
11
12
13
14
Adherence clubs
Médecins Sans Frontières (MSF) has started
adherence clubs for people who have been
stable on ARVs for 18 months or more, with an
undetectable viral load.
These clubs are like group clinic visits, but they
are run by lay healthcare workers who give
out the ARVs and do routine monitoring. They
meet every two months and club members
get an SMS the day before an appointment to
remind them of the appointment. The clubs are
supervised by nurses, who see people if they
develop a detectable viral load or an OI, lose
weight or miss a club session.
The adherence clubs have been so successful
in the clinics that MSF is now starting them in
patients’ homes and venues near their homes.
TAC is actively involved in starting and running
adherence clubs in communities and our
members are among those hosting the clubs in
their homes.
Drug resistance
Drug resistance is when a virus mutates
or changes itself in order to survive. These
mutations are natural in HIV, but if they occur
when you are on treatment it can mean the
drugs may no longer be effective.
Adherence means
sticking to something.
When we are talking about
ARVs it is very important to
take the drugs every day and
as close to the same time
of day as possible.
Photo by Samantha
46 Reinders, courtesy of Médecins Sans Frontières
It is the main reason why adherence to ARVs
is so important. Unfortunately, mutated HIV
can be transmitted (passed on to other
people), so people can be infected with the
drug-resistant virus. Some countries have
drug-resistance testing, but this is not widely
available in South Africa.
Earlier, you read about drugs in one family or
class becoming resistant to each other. This is
called cross-resistance (see page 35.) There are
varying degrees of cross-resistance and you
might still benefit from some drugs that you are
partly resistant to. The best way to avoid crossresistance is to do the best job at adherence,
so that you can maintain your first-line regimen
for as long as possible.
47
Drug side effects
Truths about side effects
Every drug has the potential to cause side effects. Everyone worries about drug side effects, with
any medicine they take. But people experience side effects differently, so it’s important to know
that even if you have heard a drug has horrible, or no side effects, your experience with the drug
may be different. It is important to remember, though, that you can change your ARVs if you
experience severe side effects.
Most side effects are usually mild and disappear or become reduced within the first few
days or weeks of treatment.
Side effects can often be reduced with other treatment.
Usually the drug causing the side effect can be changed.
There is a small risk of experiencing serious side effects, but, by staying in care of the clinic,
you should be able to catch these early.
Matthew Damane says:
‘What we must know is that the drugs
have side effects. We don’t deny that.
But if you are being monitored by your doctor,
things will go well.
It is very important to notice everything that
is going on in your life when you are taking
the drugs so that you can go immediately to
report it to the nurse or doctor. Then you and
your nurse or doctor can decide what to do in
order to stop that particular side effect.
I took AZT and developed anaemia. I felt weak
and tired all the time. My clinic helped me and I
am still alive today.‘
Never stop taking an ARV that you think is causing a side effect. Talk to your doctor
or nurse. If the side effect is severe, go urgently to the clinic.
• What are the side effects?
• How common are the side effects?
• How you can let the clinic know,
if you get side effects?
Have a good discussion with your nurse or
doctor about the side effects related to the
drugs you are taking. Ask:
Prudence Mabele says:
‘My first combination was nevirapine and
combivir (AZT + 3TC). Then I found out one
day that my liver was not coping with the
combination, in particular the nevirapine.
So it was stopped and they were doing liver
tests and everything. While they were doing
that I had to change the regimen to Kaletra and
48
Combivir. It was quite difficult because I wasn’t
sure what was going on and the doctors were
trying to explain but I think I was too anxious
to take it all in. But I was talking to a friend
of mine a lot and then after I changed,
Kaletra worked well with me and the whole
combination was good.’
• How many people have had to
stop taking the drugs because
of side effects?
The most common side effects are nausea, diarrhoea, dizziness, headache, strange dreams
and tiredness. These often become easier after a few days or weeks.
49
More serious side effects
Sometimes, side effects can be very serious and
you should seek help if they are persistent. You
can take anti-nausea and diarrhoea medications
if you need them and, if they don’t work, ask for
others. Remember, diarrhoea may be caused by
something else. If it lasts for more than a week,
you should report it.
Peripheral neuropathy
Peripheral neuropathy (PN) is described on
page 65. PN can be caused by both HIV and
medications, particularly d4T, and may occur
if you start treatment with a very low CD4
count. Although d4T is no longer recommended
in the South African treatment guidelines and is
being phased out in South Africa, many patients
are still on this medication. PN usually gets
better when d4T is stopped.
Isoniazid, which is part of TB treatment, can
also cause PN.
Your doctor should check any of these
symptoms immediately. Liver problems can also
be a sign that you have hepatitis.
Lipodystrophy
Fat accumulation can occur with all ARVs
and is probably more related to weight gain
associated with treating HIV than to the ARVs
themselves. Fat loss is linked to d4T and AZT.
Lipodystrophy, however, refers to changes in
fat cells and the distribution of body fat. Most
people with lipodystrophy experience loss of fat
in the limbs and face, and a harder or more solid
fat gain around the belly, breasts and shoulders.
Lipodystrophy can also affect blood fats or
lipids (cholesterol and triglycerides) and sugars
(glucose).
Liver toxicity
These symptoms are not to be taken lightly and
may lead to other problems. If you experience
these symptoms, talk to your nurse or doctor
about them.
A few people (less than five per cent) have to
change nevirapine due to liver toxicity. (This
is much less common with efavirenz.) Liver
toxicity usually occurs within the first six weeks
on treatment.
The best thing to do is to switch from the drugs
that are causing lipodystropy. The newer ARVs,
like tenofovir, do not cause fat loss or gain.
Lipodystrophy often improves very slowly, and
usually does not go back to normal.
Liver function tests (LFT) can find out if there
are problems with your liver. Most often, liver
function is checked at hospitals and clinics.
The cause of lipodystrophy is still being studied.
Similar symptoms occur rarely in people who
are not on ARVs.
Symptoms related to liver toxicity are:
• nausea or vomiting
• poor appetite
• yellow eyes and/or skin
• light coloured stools or dark coloured urine
• tenderness or swelling in your liver (just below your rib cage on the right side of
your body)
• fever and nausea.
Anaemia
50
Anaemia refers to a shortage of red blood
cells that carry oxygen throughout the body.
AZT mostly causes anaemia. Anaemia can be
life threatening if it is left untreated. The main
symptoms are extreme tiredness, shortness of
breath and swelling of the legs.
You should go to your doctor if you are
experiencing any of these symptoms. Pregnant
women and women over 40 years old may have
anaemia for other reasons, and AZT can make
it worse.
Sometimes efavirenz can make dreams or
depression worse, or other serious problems
might occur. Tell your nurse or doctor about any
of these symptoms you might be experiencing,
especially while taking efavirenz.
Lactic acidosis
Lactic acidosis is caused by a build up of lactate
in the blood. The risk of getting lactic acidosis
is higher with the use of d4T and AZT. This is
a side effect that is not easily diagnosed. To
diagnose lactic acidosis you must have tests
done in the hospital. If it is caught early, it can
be managed, but if it is left too long, it can be
life threatening. Symptoms include nausea,
weight loss, appetite loss, abdominal pain,
vomiting, fatigue and muscle weakness. If
you notice any of these symptoms, especially
if you are on d4T or AZT, contact your clinic
immediately.
Rash
Ten to fifteen per cent of people using
nevirapine experience a low-level rash that is
not serious. But about five per cent of people
have to discontinue the drug. (Again this is
much lower with efavirenz.) Two to three per
cent of people starting nevirapine can be at risk
of Stevens-Johnson syndrome, a life-threatening
rash. It is recommended to start nevirapine at a
reduced dose to allow your body to adjust and
to see if a rash develops, but it is difficult to do
this with fixed-dose combinations, where drugs
are combined into one pill. Therefore efavirenz
is preferred to nevirapine, with a few exceptions.
Mood changes, strange dreams,
nervousness, anxiety
Efavirenz is linked to a set of side effects that
affect your mood and feelings. It can make you
feel disoriented (you are not sure where you
are) or anxious, and your dreams may become
very vivid (strong or clear). When you first start
taking the drug, you may feel dizzy, but this will
reduce after a few weeks.
Zoliswa Magwentshu says:
‘After six months on treatment I started having
horrible dreams about snakes and frogs –
nightmares – as well as mood swings from sad
to happy to angry and I felt easily frightened.
I knew that efavirenz could cause vivid dreams
and mood swings, but I was not sure whether
this could happen so long after starting a drug.
I spoke to my counsellor and she told me that
efavirenz could still cause this even after six
months.
I then decided to go to my doctor and ask
him if I could stop because I could not cope
any more. My doctor agreed and changed the
efavirenz to nevirapine. Since then I have
had no problems.’
Remember, you should report
any changes you experience
in your body that are unusual
or persistent to your nurse
or doctor.
It is important to remember that there are other
side effects not mentioned in this handbook.
The symptoms mentioned here may also mimic
symptoms from infections or other causes.
51
William Tsolele says:
5
‘My name is William Tsolele and I have been
living with HIV since 1991. I was born in 1964
in a town called Matatiele in the Eastern Cape.
I came to Evander to work at the Harmony
Gold Mines.
Tuberculosis
Before I knew about my HIV status, I was always
sick and felt weak. I then went to Evander
Hospital to check what was wrong with me.
They did an X-ray but could not find out what
was wrong. I told them that I was losing weight,
always thirsty and coughing at night. They
eventually diagnosed me with TB using
a sputum test.
I started TB treatment in 1991 for about six
months. There were complications because
I was drinking a lot. I was on rifafour
[combination of four drugs] for six months.
After successfully completing treatment,
I went for an X-ray again and the TB was
gone. A second sputum test confirmed that
I was cured of TB. I went back to work, but
because I am HIV-positive and working
underground there was a chance that the
TB might come back.
I went on leave at the beginning of 2004. One
of my company’s policies is that when you come
back from leave you have to undergo certain
tests if you work underground, as I do. After the
routine X-ray tests, they found out that I had
pulmonary TB. They also took my sputum to
confirm the results. The lab results confirmed
that I had TB again.
I started treatment again in April 2004. I
continued until November. I had to take
treatment for eight months because it was the
second time I was treated for TB. The treatment
cured me. The company has also improved
working conditions underground and I try
by all means to avoid re-infection.
It was easy for me to adhere to treatment
the second time because I was not drinking
and I was taking the treatment at the company’s
hospital with the help of a personal monitor.
I have seen some people defaulting on TB
treatment when they go on leave from work
and take traditional medicine.
I hope my TB is gone for good. At present I
am healthy. I started taking antiretrovirals on
16 June 2005. I am positive antiretrovirals are
going to be good to me.
My advice to people who are taking TB
treatment is to avoid smoking and too much
alcohol. Try to eat as much healthy food as
you can.’
53
South Africa has one of the highest rates
of tuberculosis (TB) in the world. Since 1996,
as HIV numbers have climbed, the number of
TB cases has doubled. Seventy per cent of
people with TB also are living with HIV. We
know that TB and HIV together are more
destructive than either disease on its own.
immune system is weak and can activate
TB (wake it up).
Many other things have contributed to the
spread of the TB epidemic, such as housing
in overcrowded, unventilated conditions,
poverty, lack of good nutrition, alcoholism,
illegal drugs, overcrowded prisons and poor
mining conditions.
TB in the lungs is classified as WHO Stage 3
and extra-pulmonary TB is classified as WHO
Stage 4 (see page 27).
TB is a highly infectious germ or mycobacterium
that, unlike HIV, is transmitted through the air.
Coughing and sneezing can spread TB easily.
TB droplets can stay in the air for days in
crowded, humid and dark enclosed spaces.
The best way to avoid transmission is to keep
windows open and keep areas around you
ventilated. But even just sharing a room or
a taxi with someone who has untreated TB
puts you at risk.
Once the TB germ is spread in the air, it is
breathed into the lungs where the lymph nodes
of our immune system try and control it, making
it inactive (sleep). But with HIV infection the
Extra-pulmonary TB is found in other parts
of the body and is more difficult to diagnose.
(You can read more about extra-pulmonary
TB on page 59.)
TB can make people sick in different ways.
Usually a person with TB has a persistent cough
that lasts for weeks. The cough is worse at night
and sometimes causes vomiting. TB makes you
lose weight as it affects the appetite. It causes
high fevers with cold chills and sweating.
Also, TB makes you feel very tired.
Every year a person who is HIV positive has a
ten per cent chance that TB will become active
and cause disease. HIV-positive people may
also see the symptoms of TB develop faster and
with greater intensity (more strongly). Although
TB is curable, some people with HIV get TB a
second or third time. If your immune system
is weak, or your CD4 count is low, there is a
greater chance that TB will affect other parts
of your body, not only your lungs.
TB droplets
54
Tholakele Sibiya says:
‘My name is Tholakele Sibiya and I was tested in
1998 and I was HIV positive. After that they took
a sputum test for TB because I was coughing for
more than three weeks. The results came back
and I had TB.
They told me that I must take TB treatment
for six months. I told my mother and she
prepared an imbiza to drink. I refused to drink
it because in the clinic they told me not to mix
TB treatment and imbiza. At that time I was
confused because I had to think about HIV and
TB. Also the people I was living with treated me
as if I was about to die.
I did take TB treatment for six months and now
I feel fine and strong to face life. Today I am a
TAC member who is educating other people
about TB and HIV and I make sure people do
understand about it and the treatment. TB is
curable if people take treatment in time. Now
I’m strong and I always use condoms.’
Mahlatse Molefe says:
‘My name is Mahlatse Molefe. I’m 30 years
old and a single mother of two kids – a boy
and a girl. I live in Mpumalanga in the Kangala
district in Pankop, a semi-rural area.
In 2001 I fell pregnant and I attended my
antenatal clinic where I was encouraged to
go for voluntary counselling and testing for
in case I tested positive for HIV. I refused to
test for HIV because of the stigma around
HIV and AIDS and because I was scared of
being discriminated against.
I only got tested for TB due to my persistent
coughing. The results came back positive
but I didn’t have enough information on the
importance of adherence to TB treatment and
the effect of TB on my unborn baby. I started
TB treatment when I was four months pregnant
but I failed to take my medication because
of the side effects. I was vomiting and had
peripheral neuropathy. I decided to stop my
TB treatment and I gave birth to a baby that
was very sick. I was also told that my baby had
cryptococcal meningitis. My baby is always sick
now, and the doctor said I should take TB tests
which also came back positive. I was put on TB
treatment again but this time streptomycin was
added to my treatment and I decided to stick
properly to my treatment and now I am cured.’
55
Diagnosing TB in South Africa
GeneXpert MTB/RIF
Smear microscopy test
If you have any TB symptoms you’ll be given
a smear microscopy test. TB in your lungs is
diagnosed by looking at sputum (coughed up
fluid) under a microscope.
If the TB germ is identified it means you are
smear positive and that you need to
be on TB treatment. It takes about a week for
the diagnosis to be made. It is important to
know that you can be smear negative but still
have TB. If that is the case, a more sensitive test
should be done.
Chest X-ray
If you are diagnosed smear negative, you
should have a chest x-ray to detect TB in your
lungs. However, not all clinics have the skills to
diagnose TB by using x-rays.
A newer test to diagnose TB has been
introduced in many clinics in South Africa:
the GeneXpert MTB/RIF. This test is much better
than smear microscopy at finding TB in sputum
and only takes ninety minutes to complete
(although other delays at the clinic may mean
it takes days before you get your results). This
test also tells you whether your TB is resistant
to rifampicin, the most important TB drug;
so it can diagnose drug-resistant TB at the
same time.
TB culture test
Extra-pulmonary TB (TB outside the lungs) is
a big problem for people who are HIV positive.
The smear test is not the best indication of TB
in other parts of your body, so a TB culture test
from an additional sputum test should be done
in these cases.
TB skin test
The TB skin test (TST), also called PPD or
Mantoux test is important to have done if you
are HIV positive. It shows if you have ever
been exposed to TB, either through natural
exposure, or with the Bacille Calmette Guerin
(BCG) vaccine (a vaccine that you can have to
prevent you from getting TB when you are a
child). If you have a positive TB skin test, your
TB infection is probably latent, meaning it is
not active, contagious or making you sick. Your
doctor will prescribe a course of antibiotics to
prevent the TB from becoming active. A TST
will not show if you have active TB.
Treating TB
last four months of TB treatment, just rifampicin
and isoniazid are taken.
Treating TB can be difficult, but it can be
cured, even in people who are HIV positive.
If you use a combination of drugs and take
the medication properly, your symptoms will
resolve (improve or clear up) after two months.
But it is important that you continue to take the
medicines for the full course of the treatment.
If you have been treated for TB before, other
drugs will be added to ensure a complete
response.
If you are HIV positive, you should take
additional medications, such as: cotrimoxazole,
to prevent pneumonia; vitamin B complex;
pyridoxine; tablets to stop vomiting; and, of
course, ARVs.
People with HIV and TB should start the
TB medicines first, if they are not already
on HIV treatment. If your CD4 count is under
200, or if you have AIDS, you should still treat
for TB before taking ARVs, but you should
start taking ARVs as soon as possible. There
may be negative interactions between your
HIV and TB drugs and your ARV drugs may
need to be adapted.
Smoking and drinking alcohol should be
avoided while on TB treatment.
TB medicines cause side effects, such as: loss of
appetite, stomach pains, nausea, vomiting, dark
orange-coloured urine, joint pains, peripheral
neuropathy, itching, rash, altered vision, liver
problems and difficulty with hearing.
When first treated for TB (first-line treatment)
the regimen is four drugs: rifampicin (R),
isoniazid (E), pyrazinamide (Z), and ethambutol
(E) for two months. These drugs are taken in a
fixed-dose combination called Rifafour. For the
First-line treatment
First two months of treatment
H
R
Z
E
Rifafour
Last four months of treatment
H
56
R
57
TB drugs and their side effects
Drug
Isoniazid
Rifampicin
Pyrazinamide
Ethambutol
Streptomycin
Minor side effects
peripheral neuropathy
(tingling, numbness and
‘pins and needles’ in feet)
anorexia, nausea,
mild abdominal pain,
itching
joint pain
peripharal neuropathy,
joint pain
Extra-pulmonary TB
Major side effects
hepatitis, skin rash, fever
vomiting, hepatitis
hepatitis
progressive loss
of vision, skin rash
rash, fever, dizziness,
vomiting, anaphylaxis,
disturbed balance,
deafness (also to foetus)
The drugs we use to treat TB are very old and some are very toxic. TAC and many international
activists are campaigning to make sure that new drugs become available in South Africa, once they
are proved to be safe. We are also campaigning for shorter and safer regimens to treat TB.
58
While the most common form of TB is in the lungs, there are several types of TB that can be
more difficult to treat in other parts of the body. Referred to as extra-pulmonary TB, each type is
diagnosed particular to the area.
Pleural effusion
TB that is in the space between the lungs and ribs
Pericardial effusion
TB that is in the cavity surrounding the heart
Meningitis
TB that is in the space around the brain
Abdominal
TB that is in the stomach
Spine
TB that is in the backbone
TB can also be found in the following places:
lymph glands, ear, voice box/vocal chords, kidneys, bladder, testicles/womb, skin, eye
Part of the body where
it can be found
Symptoms of
extra-pulmonary TB
abdominal cavity
tiredness, swelling, tenderness, sharp pain, chronic
diarrhoea
bladder
pain when you urinate, blood in your urine
bones
swelling, pain
brain
fever, headache, nausea, feeling sleepy, coma
joints
aches, pains
kidneys
kidney damage, kidney infection
lymph nodes
large, hard nodes mainly in the neck; not painful and may
have pus
pericardium (around the heart)
fever, large neck veins, shortness of breath
reproductive organs
men – lump in scrotum / women – sterile
spine
pain, collapsed vertebrae, leg paralysis
59
Preventing TB
Drug-resistant TB
Multi-drug resistant tuberculosis (MDR-TB)
is a form of TB that has become resistant to
the standard regimens. The treatment course
for MDR-TB is longer and more complicated,
using different medicines, depending on the
TB culture. About 50% of MDR-TB patients
get cured – although your chances of being
cured are much higher if you take your
treatment properly.
A newer, more dangerous type of TB is called
extensive drug resistant TB (XDR-TB).
Both resistant types can be transmitted but
are also found in those who did not finish their
initial TB treatment before all the TB was killed
in their bodies.
Imagine you are very strong boxer and today you are
up against a fighter named TB. Your fighting strategy is
to give all your strongest punches, because, when you
do, you always knock out your opponent within six
rounds. But today, you are tired and decide not to give
your strongest punches for the first six rounds. What
happens? The smart TB stays in the ring and studies
your moves. After a few rounds, TB has learned how
you fight. TB then changes its fighting style so it can
avoid your punches and beat you.
Drug resistance happens in the same way. The TB antibiotics are your strongest punches.
The rounds are the number of months it takes to finish treatment. The TB drugs are your
fighting strategy. When you don’t take all of your TB antibiotics, the bacteria has time to
learn to fight back. The TB bacteria change structure, or fighting strategy, so your treatment
no longer works. Once the TB is able to avoid the TB drugs it continues to grow and cause
disease in your body. The small changes to the structure of TB bacteria are called mutations.
If you do not adhere to your TB treatment, the bacteria mutate and become drug-resistant.
Just as with HIV, adherence to TB medicine
is the best way to avoid resistance.
60
There are several ways to prevent TB:
Children can be immunised with a vaccine called BCG.
The vaccine is only partially effective and, once vaccinated,
the child will always test positive for TB.
Children younger than five years old should get medicines
to prevent TB, if family members are infected with it.
Adults with HIV can take isoniazid tablets for six months, but
this will not protect them from a new TB exposure. ARVs are
ten times more effective than isoniazid in preventing TB.
It is important to cover your mouth if you are coughing, or when
you are waiting in medical clinics, to prevent TB from spreading.
Ensure rooms are well ventilated (get lots of air) by opening
the windows and doors to allow the TB germs to go out.
Do the same with windows in taxis.
61
A weakened immune system, or other viruses and bacteria can cause several health
conditions that can affect your quality of life and your overall health status. A person
who is HIV positive will usually experience serious health problems throughout his or
her life, but many of these problems can be treated. Most health problems will get
better slowly with ART.
HIV complications
of the mouth, ears and eyes
6
HIV
complications
Eyes
The most serious eye infection is caused
by cytomegalovirus (CMV). With CMV your
eyesight gets worse over time. Complete loss
of vision can occur and it can be in one or both
eyes. CMV is a WHO Stage 4 complication and
only occurs when someone’s CD4 count is
less than 50. Only specialised eye clinics can
provide the treatment to slow down the loss of
vision, which is an injection of gancyclovir into
the eye. Once you are treated you will not gain
lost vision, so it’s important to have your eyes
checked on a regular basis.
These are harmless white patches on the sides
of the tongue that require no treatment.
Ensuring that your immune system is strong can
prevent CMV. Make sure you are being treated
with antiretroviral medications, especially if your
CD4 count is very low.
Thrush
Thrush is caused by the common candida
fungus. It first causes white patches in the
mouth and tongue. Candida in the throat or
oesophagus is a WHO Stage 4 classification and
can lead to weight loss, because it is difficult
for the person to swallow food. Treatment for
mouth thrush is with nystatin tablets or liquids.
Fluconazole can be used to treat thrush in the
oesophagus.
62
Oral hairy leukoplakia
Teeth
Bacteria in the mouth can cause holes in
the teeth to develop. The bacteria grow and
multiply if you don’t look after your teeth well
and if you have too many sugary drinks or eat
too many sweets. Consistent daily brushing is
important for healthy teeth.
Cold sores, canker sores
(aphthous ulcers)
Cold sores, also known as fever blisters, are
usually found on the lips. They can be treated
with a topical antifungal medication or with
acyclovir. Canker sores are very painful and
can be caused by medications. They usually
go away on their own, but they can also cause
difficulty in eating.
Ear pain
Usually pain in the ear is caused by an infection
that is treated with antibiotics. Sometimes pus
will develop. Do not stick hard things into the
ears in order to clean them, since you can tear
your eardrum. If you feel pain in your ears make
sure you visit the clinic.
63
HIV complications of the skin
Other HIV complications
Few HIV-related skin conditions are life
threatening, but they can be painful,
stigmatising (seen to be socially unacceptable)
and affect your self-confidence. Most of the
HIV-related skin conditions are classified
in WHO Stage 2. The following are the
most common skin conditions seen in HIVpositive people.
Pain
Peripheral neuropathy
There are many reasons people have pain and
different people can tolerate (put up with)
different amounts of pain. However, many
doctors are not comfortable with prescribing
pain medications since they fear patients will
abuse it or become addicted. Understanding
the causes of pain is important, as is getting the
appropriate pain medication. Make sure you ask
for more pain medication if you feel you need it.
Peripheral neuropathy (PN) is a very painful
condition in the feet and lower legs, caused
by certain HIV medications like d4T or isoniazid
(see HIV treatment section). However, it can
also be caused by poor nutrition, lack of
vitamins or HIV itself.
Shingles
Caused by the herpes zoster virus that causes
chicken pox, shingles shows up as a painful rash
on one side of the body. If not treated, the rash
can blister and become infected. Shingles can
leave scars that are also painful. Also, if the rash
is on your face it can cause blindness. Treatment
for shingles is with acyclovir which is available
in all health facilities.
Warts
There are many types of wart but a virus called
human papilloma virus (HPV) causes most of
them. Certain wart types that are found on
the cervix in women and the anus in men and
women can become cancerous. Treating HPVrelated warts can be complicated and painful,
but an acid peel known as podophyllin can be
used to remove them. Doctors and nurses can
also freeze them off and in some cases remove
them surgically.
Moluscum contagiosum
This condition looks like warts, but consists
of small round bumps with a tiny hole in each
tip. They are found most often on the face and
neck. They are not usually painful but they are
unsightly. Doctors must remove them with an
instrument.
Fungus-related skin issues
Fungus can be found on the penis, vagina,
finger and toenails or anywhere else on the
64
body. Ringworm is a type of fungus, as is
athlete’s foot. Fungal conditions are treated
with anti-fungal creams known as miconazole
or clotrimazole or fluconazole pills.
Cryptococcus is a WHO Stage 4 fungal
condition that can be found on the skin,
but it most seriously affects the brain.
Rash
Several things cause itchy rash, but most often
are related to an infection, dry skin, scabies
or side effects from medication. Doctors can
diagnose the cause and prescribe treatments,
such as aqueous creams or emulsifying
bath oils, or anti-histamine pills, such as
chlorpenamine or promethazine. Treating
scabies requires the use of benzyl benzoate
and all linen and clothing must be washed.
If you have itchy rash, avoid scratching as it
can cause the rash and itching to spread.
Kaposi sarcoma
Kaposi sarcoma (KS) is a type of cancer or
malignancy that is caused by another virus
known as HHV-8. It is a purplish brown hard
blister that is raised on the skin. KS can be
very unsightly and can cause stigma (make
the person who suffers from it feel unaccepted
in society). It can affect the skin, inside of the
mouth or other areas on the body. KS can also
be found inside the body in the lymph nodes,
lungs or intestines.
KS is usually found in people who did not know
they had HIV and who have weakened immune
systems (WHO Stage 4). Treatments depend on
the severity of the spread of KS. At specialised
treatment clinics, radiation and chemotherapy
are used. Also, treating with effective ARVs
to boost the immune system can have a great
effect. Go to your clinic if you suspect you have
KS, as early treatment with ARVs is the best
treatment for KS.
The following list of pain medications
is organised from safest to strongest:
Paracetamol is a good and safe pain medication.
Aspirin is helpful but should be taken with food and might cause side effects such as stomach ulcers.
Indomethacin, diclofenac or ibuprofen are good for muscle or joint pain. They also should
be taken with food and water and can cause
ulcers or kidney problems.
Paracetamol and codeine are combination drugs that help coughs and diarrhoea.
Codeine phosphate is a very strong pain medication only prescribed by doctors. It can cause drowsiness.
Peripheral neuropathy usually starts
with a tingling sensation in the centre
of the foot or hands, but the pain can become
an intense, burning feeling that can affect
walking.
Neuropathy can occur at any HIV stage and any
CD4 count, yet is often seen in those who have
more advanced HIV.
Neuropathy treatments are amitriptyline, a
medication used for depression. Sleepiness
is a side effect of this drug and it is not often
prescribed at clinics. Pyridoxine (vitamin
B6) can be helpful if isoniazid causes your
neuropathy.
ARVs react with other pain medications such as
carbamazepine, so taking these is not advisable.
Adding other pain relievers such as ibuprofen,
indomethacin, codeine or morphine may be
helpful. You should also not drink alcohol if you
have neuropathy.
Tilidine is the strongest pain medication available for children.
Morphine is the strongest pain medication available. It should be taken with a laxative to prevent constipation.
65
Diarrhoea
Diarrhoea (runny tummy) is loose or runny
stools that last for more than a week. Severe
diarrhoea can cause cramping and pain.
The cause of diarrhoea can be many things.
Shigella, salmonella, campylobacter, entamoeba
and giardia are causes of diarrhoea that are not
related to HIV. Cryptosporidium, microsporidia,
isospora or mycobacteria are HIV-related
diseases that cause severe diarrhoea and are
classified as WHO Stage 4. A few viruses can
cause diarrhoea.
There are important ways to prevent the spread
of some of the germs that cause diarrhoea.
For example, practise good hygiene when you
prepare food, make sure the water you drink is
clean, wash your hands after using the toilet,
and wash baby bottles properly.
The most important thing to remember if you
have loose stools is to drink lots of water, even
if you don’t feel like it, because you can become
dehydrated very quickly (your body loses a lot
of water).
Usually diarrhoea will go away after a week,
however your nurse or doctor may need to
prescribe a specific antibiotic that will clear
it up. There are also medications such as
loperamide that stop the diarrhoea, but they
will not stop the cause.
Signs of dehydration
sunken
soft spot in
baby’s head
sunken eyes;
no tears
dry mouth
when pinched
gently, skin does
not spring back
sudden
weight loss
little or no
urine; urine is
dark yellow
Stress and depression
Many people are shocked when they first hear
about their HIV-positive status. They might feel
scared, lonely and stressed. This is a normal
reaction, not an illness. Time, counselling and
joining a support group will help you overcome
these feelings.
Depression is an illness that is common in
people living with HIV. However, it is often a
missed diagnosis. Depression usually develops
over a few weeks. It is a general feeling of a
low mood linked with physical symptoms.
Depression is caused by an imbalance of certain
chemicals in the brain. It often comes with
chronic disease, loss of your job, problems with
a relationship, loss of a family member and
damage to your self-esteem.
Many HIV positive people go through all of
these experiences. Some women also get
depression after having a baby.
Without water
No dehydration
If you suspect depression check
for these symptoms:
Do you feel down most of the time?
Glucose water
Glucose water is very helpful in restoring lost
chemicals and water from diarrhoea. You
can make it using a litre of clean water, eight
teaspoons of sugar and half a teaspoon of
salt. Drink two large cups of glucose water
after every loose stool. Babies should drink
one large cup of glucose water after vomiting
or diarrhoea. Always consult your clinic if you
have bad diarrhoea. The clinic will provide oral
rehydration salts to dilute with water.
Have you stopped enjoying things you used
to enjoy, like music, soccer or chocolate?
If your answer to many of these questions is
‘yes’, you have some degree of depression.
Depression can be treated with amitriptyline or
fluoxetine and psychological support.
Dementia
Dementia affects your thinking so that you
are sometimes unable to communicate, you
struggle to pay attention and you become
forgetful. You also lose your function of
movement. You become clumsy, lose your sense
of balance or even become paralysed.
Your personality can change in that you can
become apathetic and zombie-like. Dementia
that is HIV-related is a general slowing down of
the function of the brain, caused by HIV actually
penetrating the brain. Before a nurse or doctor
can make a diagnosis of dementia, other brain
illnesses, like depression or meningitis, must be
excluded. For example, depression often causes
forgetfulness and reduced concentration.
Depressed mood, however, is uncommon in
dementia patients. Patients are usually unaware
of their deteriorating state. HIV dementia is
classified as WHO Stage 4; thus it is often called
AIDS dementia. AIDS dementia is best treated
with an ARV regimen.
Do you try to find peace by overeating? Or,
do you lack appetite and have you lost weight?
Do you sleep badly at night? Do you struggle
to get up in the mornings?
Do you feel angry and agitated quickly?
Or, do you feel very passive?
With water
Do you lack energy every day?
Do you struggle to concentrate? Is it difficult
to decide about simple matters?
Do you feel guilty? Do you sometimes feel
worthless?
Do you think of death a lot? Do you think of
killing yourself?
66
67
Headache and meningitis
meninges
Cryptococcal meningitis usually only occurs
in people living with HIV. All other forms
of meningitis occur in people who are HIV
negative and people who are HIV positive.
However, all forms of meningitis are more
common in people who are HIV positive.
Viral meningitis Viruses like HIV itself and
herpes can cause this form of meningitis.
Viral meningitis develops over a week.
There are many things that can give you a
headache, such as stress, flu or high blood
pressure. A serious illness called meningitis
also causes severe headaches. Meningitis
is an infection of the spinal cord and of the
membrane that covers the brain, called the
meninges.
It is very important to recognise the symptoms
of meningitis, and get treatment immediately.
The headache is often accompanied by a
temperature (feeling hot and cold), nausea
and vomiting. Other signs of meningitis
include fatigue and a stiff neck. Meningitis is
sometimes made worse by light. There can also
be confusion, vision problems, fits and even
coma. The symptoms may come on slowly and
develop over weeks. However, you may also get
sick from one day to the other.
Meningitis usually makes you so sick that you
feel you need to go to the hospital. A doctor
will need to take fluid from your spine to make
a diagnosis. This is called a spinal tap or a
lumbar puncture. A needle is inserted in the
middle of your back just above your hips.
The needle taps some fluid that surrounds
the meninges of the spinal cord. This sample
is then analysed in the laboratory to determine
what germ is causing the infection. A lumbar
puncture is safe and usually not too painful.
However, some people get headaches
afterwards that can last a few days.
68
Bacterial (septic) meningitis caused by
bacteria like meningococcus and streptococcus.
Bacterial meningitis can develop in hours or
over days. It is classified as WHO Stage 3.
Meningococcus is very contagious and
the family should receive prophylaxis
(preventative treatment). It is often seen in
children. It is treated with antibiotics, including
cephalosporin.
TB meningitis (TBM) TB is another bacterium
that can cause meningitis. Since the TB
bacterium is very different from other types
of bacteria, it is classified separately as TB
meningitis (TBM). It can take a couple of days
or weeks for TBM to develop. It is classified as
WHO Stage 4. It is treated with the usual TB
treatment.
Neurosyphilis Syphilis, a sexually transmitted
infection (STI), can cause neurosyphilis. (You
can find more information on STIs on page
76.) It develops at a late stage of the STD. In
an HIV-negative person it takes ten years for
this to happen. In a person living with HIV,
neurosyphilis can develop two years after the
syphilis has started. Prevent neurosyphilis by
treating syphilis early and by using condoms.
Neurosyphilis is treated with intravenous
penicillin.
Cryptococcal meningitis Cryptococcus is
a fungus found in soil. It can get into your
body when you breathe in dust. It can cause
cryptococcal meningitis, which can take a week
or a month to develop, and is classified as WHO
Stage 4. Cryptococcal meningitis is treated
with fluconazole. The drug can be swallowed
or injected directly into the body. Fluconazole
should be available in all clinics and hospitals.
Coughing
People living with HIV often experience a
cough. Sometimes medicines are needed
but sometimes a cough goes away without
medication. Sometimes it is necessary to refer
a person with a cough to a hospital.
There are different causes for coughing. Each
one needs different treatment. Most clinics do
not have cough mixture, as this does not help
the cough go away faster.
Some people cough more in spring. Their cough
is worse when it is windy. Dust from trees,
flowers (pollen) or grass-seeds in the air make
it worse. The cough comes with itchy, red eyes
and an irritated throat. This is called hay fever
or allergies. The clinic can provide antihistamine medicines.
Some people cough because they are smokers.
Particularly in the past, some people living
with HIV used to say they would die anyway,
so they may as well carry on smoking. Now we
know that HIV is not a death sentence. If your
HIV is well managed with ARVs, smoking is a
much bigger risk to your health than HIV. You
are more likely to die from smoking than HIV!
Smokers get more chest infections and this can
make HIV worse for them. Smokers should be
encouraged to stop smoking.
Most people get a cold during the winter
months. This comes with a runny nose. If you
also have a fever, you have flu. Colds and flu
are spread by viruses. The cold virus is spread
by contact of the virus with people’s hands.
The flu virus is spread through the air by
coughing. Both illnesses usually last for a week.
It is not necessary to get medicines from the
clinic for a cough that is caused by a cold or flu.
You can use steam to relieve the symptoms and,
if you feel you need medicines, you can take
paracetamol tablets.
If the cough stays longer than a week, if a
pain spreads down into your chest and if you
cough up yellow or green mucous, your air
pipes have been infected with bacteria. This is
called bronchitis. Antibiotic medicines such as
amoxycillin will help.
If the cough is so bad that you get short of
breath or cough up blood, feel very hot and
cold, and you have a pain like a knife stabbing
you in your chest, the infection has gone into
your lungs. This is called pneumonia, which
means fluid in the lungs. You need to lie in
hospital and get antibiotic treatment. Bacterial
pneumonia is classified as HIV Stage 3.
If you cough for more than
two weeks, always check
for TB!
Pneumocystis jiroveci /carinii
pneumonia (PCP)
People living with HIV sometimes get a different
kind of pneumonia called PCP. If you have PCP
you get a dry, slow cough and you constantly
feel short of breath. PCP can only attack the
body when the immune system is weak. PCP
is classified as HIV Stage 4. Cotrimoxazole (also
known as Bactrim or Septra) is used to prevent
and treat PCP. If you are not on ARVs, they
can help bring your immune system to a level
that can control PCP. If the cough does not go
away with treatment you should go back to the
nurse or doctor. This might mean that you need
stronger tablets or that you have TB.
Whenever you get antibiotic medicines, it is
important to take them as prescribed and to
finish them all. Even if you feel better after a
few days, you must still finish the medicines.
If the tablets make you feel bad, tell the
nurse or doctor about it, but do not just stop
taking your prescribed medicines. Also tell the
doctor or nurse if you have had problems with
antibiotic medicines before, such as skin rashes
or fainting.
69
Neliswa Nkwali says:
7
Pregnancy
and HIV
‘Hello. I am Neliswa Nkwali. My hometown is
Butterworth, Eastern Cape. I was diagnosed HIV
positive on 8 October 2001. In 2003, I became
ill with pulmonary TB. I took TB medication
and started ART on 1 April 2003, when my CD4
count was 39. I was very sick.
I told my family that I was beginning ART and
they were supportive, especially my youngest
brother. Although some people told me
that ART was dangerous, comrades at TAC
encouraged me to take the drugs. I first took
AZT, 3TC and efavirenz. My CD4 count started
to rise and I began to feel better. I felt that I had
been given a new opportunity in life and I felt
happy again.
In 2004 I decided I wanted to get pregnant.
My CD4 count was 439. Comrades at TAC had
told me that it was possible for me to have an
HIV-negative baby, especially if I continued
ART. Before I got pregnant I took advice from
the doctor and switched from efavirenz to
nevirapine. When I discovered I was pregnant, I
cried with happiness.
Some people in my community were critical of
me when they found out that I was pregnant.
They knew that I had been very sick with AIDS
a few years ago and didn’t understand about
70
ARVs and PMTCT (prevention of mother-tochild-transmission). My family was supportive
of me but they were also very worried that my
baby would be born HIV positive. My doctor
and nurses were very helpful though.
I tried to avoid stress during pregnancy and ate
healthily. I also made sure that I adhered to my
schedule, always taking my drugs at the right
times. My CD4 count went down to 329 but I
knew that this was common in pregnancy. My
CD4 count recovered after my baby was born
and continues to rise. Currently my CD4 count
is 889.
My baby, Siviwe, was born on 15 June 2005
by vaginal birth. He is HIV negative. He is very
active, energetic and brilliant. I try to keep him
close to me as I love him so much.
The message I want to send to HIV-positive
women is to look after your health, plan your
pregnancy and learn all you can about HIV and
pregnancy. Talk to your doctor and nurses and
consider your viral load. Your own health is the
best way to ensure a healthy baby. And you
want to be around to see him or her grow up!’
71
The standard fixed dose combination (FDC),
tenofovir + FTC + efavirenz is recommended
for first-line therapy and this is the same for
pregnant women.
Taking medications while pregnant can
sometimes make people worried. But many
thousands of women have taken ARVs during
pregnancy without any complications to their
babies.
Nomawethu Ndindwa says:
‘I am Nomawethu Ndindwa. I live in Lower
Ntafufu, or Tambo, Lusikisiki. I was diagnosed
HIV positive during my pregnancy in 2001. At
the hospital they didn’t tell me what blood tests
they were doing. My child died when he was a
year and one month on 23 February 2002. He
was never tested.
In 2005 I was pregnant again, this time with
twins. At five months pregnant I did a CD4 test
and my count was 247. This time I started ARVs,
took AZT, 3TC and NVP.
My twins were given NVP syrup at birth. They
are both negative. I am still taking my ARVs
and I adhere to them. I haven’t experienced
any side effects.’
Vertical transmission (from mother to child)
can happen before OR during birth OR through
breastfeeding. It is still not fully understood
how HIV is transmitted from mother to child but
the lower the viral load in the mother, the less
chance for transmission to the baby.
Health providers in South Africa are required to
offer all pregnant women HIV tests. If the test is
negative, they are offered another test 32 weeks
into their pregnancy. If the test is positive, it
must be confirmed; then the mother is given a
CD4 test, screened for TB and clinically staged.
ARVs are incredibly effective at reducing the
risk of your baby becoming HIV positive, and
will improve your health.
Pregnant women can also choose not to be
tested but will be counselled to reconsider
and offered another test at subsequent visits
to the clinic.
It is very clear that the prevention of vertical
transmission of HIV has been a phenomenal
success in South Africa and across the world,
saving tens of thousands of babies from
dying of AIDS. Importantly, it has also allowed
pregnant women access to ARVs.
Pregnant women who are HIV positive are
eligible for ARVs immediately after their
HIV diagnosis.
There were concerns with efavirenz in the
past as it was shown to cause birth defects in
pre-clinical (animal) studies. Many women have
used efavirenz in pregnancy now and it seems
to be as safe as any other ARV in pregnancy.
Now national and WHO guidelines have
changed to recommend efavirenz in pregnancy.
According to our national protocol, all pregnant
women, regardless of their CD4 count, are
initiated on this regimen on the same day that
they are diagnosed HIV positive, or within
seven days.
A pregnant woman will have a CD4 test but
does not need to wait for the results before
she starts ART. If a woman’s CD4 count is 350
or less or WHO Stage 3 or 4 she will stay on
lifelong ART after her baby is born. (You can
find the WHO stages of HIV on page 27.) If her
CD4 count is more than 350 she will continue
ART throughout her pregnancy and for one
week after stopping breastfeeding.
After the baby is born is a time
to celebrate. Remember to
stay on your ARVs, and seek
extra support if you need it
during this time.
Babies born to HIV-positive mothers will always
test HIV positive at first with an antibody test,
since they carry their mother’s immune system
with them. So, babies are tested with a PCR
test that is like a viral load test. If your baby is
not HIV positive, the antibodies will gradually
disappear and he or she will test HIV negative
with an antibody test after 18 months. All babies
born to HIV-positive mothers are given NVP at
birth and daily for six weeks, irrespective of the
baby’s HIV status.
Babies must then be tested with a PCR test
when they are six weeks old. If they test
positive, they will be started on full treatment
immediately. If the PCR test is negative, it must
be repeated six weeks after breastfeeding ends.
Pregnancy will not make HIV progress faster or
become worse. Sometimes being pregnant can
cause a drop in the CD4 count, but this returns
to normal after the baby is born.
Side effects of taking ARVs when you are
pregnant are mostly similar to the normal side
effects that you can read about on pages 48–51,
but nausea can be worse, as morning sickness is
also a common symptom with pregnancy.
72
73
Infant feeding – TAC’s position
Exclusive
breastfeeding =
breastmilk only.
Mixed feeding =
adding water, juice,
formula, baby foods
or any other foods.
Mixed feeding
can increase the
chances of a child
getting infections.
While exclusive breastfeeding is the best
way to feed an infant, it carries a risk of HIV
transmission if either the mother or
the baby is not receiving ARVs, or if she
is not taking them properly or the baby
is not receiving them properly.
Infant feeding practice for HIV-positive mothers
has long been a controversial and difficult
subject. In the past in South Africa, clinicians
in the different provinces were divided between
promoting exclusive breastfeeding (mainly in
KwaZulu-Natal) versus giving babies formula
milk (mainly in the Western Cape and Gauteng).
However, recent studies have shown that the
risk of transmitting HIV during breastfeeding
can be reduced significantly by providing ARVs
to mothers or to their infants. Government
introduced a policy of exclusive breastfeeding
for HIV-positive women in 2012.
74
At TAC, we agree that this is the best advice
for many HIV-positive women. However,
matters are not so simple. Two things need
to be considered:
1 Many women are unable to exclusively
breastfeed. We cannot ignore this large group
of women. Therefore the new policy must cater
for these women.
2 The risks associated with formula-feeding
vary from place to place. For example, it is
probably riskier for a woman in rural KwaZuluNatal to formula-feed, than for a woman in
Johannesburg. Programmes in Cape Town,
Johannesburg and elsewhere have successfully
implemented formula-feeding programmes with
low transmission and mortality rates.
Our recommendations are,
therefore:
Patient education is critical.
Women should be counselled that the best
option is exclusive breastfeeding with ARVs.
However, women should not be made to feel
ashamed if this does not work for them. If
they choose not to breastfeed, they must be
supported and counselled on how best to
protect the health of their baby and themselves.
Affected by HIV
Married woman
Mother of three
Grandmother to one
Prioritise provision of ARVs at sites where there
is prevention of mother-to-child transmission
(PMTCT). However, there should not be a
sudden withdrawal of formula milk, especially
at sites where formula milk provision has been
successfully implemented.
Yoliswa Mtshawuli
Loves taking care of children
Photo by Eric Miller
8
Sexually
transmitted
infections
Men and women are both at risk of contracting sexually
transmitted infections (STIs). Unfortunately, some cultures
blame women for STIs but both partners may be responsible
and should take precautions. Condoms should be worn
with every sexual encounter where bodies are touching
and fluids exchanged.
Risks of unprotected sex
During unprotected sex, women are more
likely to contract STIs and HIV because the
lining of the cervix is thin and if there is
ejaculation, semen stays inside the vagina for
a long time. This increases the risk of
contracting STIs and HIV.
If you and your partner are both HIV positive,
you might have different strains of HIV and
there is a risk of re-infection. Also, if one of
you starts antiretroviral medication, the virus
can develop resistance to the medication.
Then, if your partner gets infected with the
resistant virus, the same medication will not
work for your partner when she or he starts
treatment with ARVs.
In men who have not been circumcised, the
vaginal fluid can remain under the foreskin
for a long time, increasing the risk of infection.
76
Men having unprotected sex with men run
a higher risk of being infected with HIV
compared to men having unprotected sex
with women. Unprotected anal sex is
particularly risky as the anus often tears slightly
during sex. This can allow the virus to enter
the blood. However, using a condom with
lubrication gives good protection.
Medical circumcision has been shown to reduce
HIV infection in several studies. It is, therefore
recommended that young men get medically
circumcised to reduce their risk of contracting
HIV. Using condoms is however still essential –
even if a man is circumcised.
Getting more people on ARVs will help
to stop the spread of HIV. If more people
were being tested for HIV – and if those people
were then able to access treatment – the overall
rate of HIV transmission would go down in any
given community.
77
Symptoms of STIs
It is important to recognise the symptoms
of STIs, so they can be diagnosed and
treated quickly.
Fluids that are running from the vagina or penis
that have an odour and cause painful urination
are common STI symptoms. In women there
may also be pain during sex. Gonorrhoea,
chlamydia, or trichomonas are STIs that cause
these symptoms. Treatment is with cefixime,
doxycycline or metronidazole.
Sores or ulcers that
are not very painful
Sores can develop on the vagina or penis a
few days after being infected with syphilis or
haemophilus. If these are not treated, they can
enter the blood stream and eventually cause
illness and death. A blood test for syphilis can
be done and treatment is with penicillin or
erythromycin.
Sores or blisters
that cause pain
Herpes causes painful blisters on the genitals
in men and women. Sores can be very painful
when urine comes in contact. Herpes is a virus
that can cause cold sores on the lips. Once
infected you remain infected for the rest of
your life. The blisters appear regularly and
disappear after a few days. They can reappear
if you are stressed or if your immune system
is weak. Condoms will not protect against
herpes. Acyclovir is the best treatment and is
very effective.
Runner for health
Runner for health
Humble activist
Another type of herpes causes shingles, which
is the same virus that causes chicken pox in
children. Shingles can be very painful blisters
that occur on the face or trunk of the body.
Acyclovir is the best treatment for shingles.
Mosuli Qhaba
Thanduxolo Mngqawa
Africanist
TAC member
Living in Gugulethu
Sportsman
Fun loving
Warts
Warts can be anywhere on the body but, in
people who are HIV positive they are common
on the face and hands, on the vagina in women
and on the anus in men and women. The human
papilloma virus (HPV) causes them. If warts
are untreated, they can lead to skin changes
called dysplasia that can lead to cervical or anal
cancer. The best available treatment is to use a
chemical called podophyllin that is painted on
the warts for three weeks. If the warts are large
they need to be removed surgically.
Itching in and around
the vagina
This is usually a fungal infection known as
thrush. It is not an STI, but in women with
weakened immune systems it can grow fast
and cause symptoms. Treatments used are
clotrimazole cream or tablets, or fluconazole is
used if the problem recurs.
Other germs
Other germs are spread through sex, such as
hepatitis B; HHV8, which causes a skin cancer
called Kaposi’s sarcoma; and HIV. It is important
to remember that STIs help to spread HIV
through openings in genital sores. STIs increase
the amount of HIV in the blood stream in people
who are HIV positive and who are not on ARVs.
TAC activist
Runner for health
HIV and LGBTI Advocate
Tantaswa Ndlelana
78
Photo by Eric Miller
Mother of two, actively teaching tolerance
79
Taking ARVs to prevent HIV
Pre-exposure prophylaxis
9
TAKE CONTROL
Taking ARVs to prevent HIV (known as preexposure prophylaxis or PrEP) has been
found to prevent HIV transmission in gay
men and sero-discordant couples (couples
where one partner is HIV positive and the
other is not). For women, clinical trials have
shown mixed results.
Post-exposure prophylaxis
The chances of getting HIV from a single
exposure are small. However, a discharge
or sores on the penis or vagina increase the
chances. If you are worried, you can ask a nurse
or doctor about post-exposure prophylaxis
(PEP). PEP means taking a combination of
ARVs (AZT and 3TC) for a month, in order to
prevent the HIV from replicating in your body.
But you must do this within 72 hours; otherwise
the drugs do not work to prevent the HIV from
being active in your body.
80
Currently PrEP is the use of an oral pill
(TDF + FTC, or TDF alone). PrEP also involves
the use of microbicide gels to prevent HIV
exposure through vaginal or anal sex. Both
are still in clinical trials and we do not yet
know if they work.
In the case of rape, if the person who has been
raped tests HIV negative, he or she will be
offered the option of PEP, after counselling
at a government hospital. In the case of a
condom breaking, healthcare workers do not
usually offer PEP. If you are really worried,
it is best to speak to your doctor to help you
decide what to do.
81
Safer sex
Condoms and oral sex
People living with HIV can have healthy sexual
relationships. The main way in which HIV is
transmitted is through penetrative sex, without
condoms. You can protect yourself and your
partner against this by using condoms every
time you have penetrative sex. It is good to
always have enough condoms handy. Discuss
using condoms beforehand. Take out the
condoms so that your partner can see them
before you start undressing each other. It is rare
to get HIV through kissing, but if both people
have open sores in the mouth and one person is
HIV infected, it is possible.
Control
If your partner refuses to use condoms, speak
to him or her. Find out what his or her doubts
are about using condoms. Explain that using
condoms is more hygienic and prevents the
spread of HIV and other STIs. With condoms,
you can relax and feel safe. You can feel you
have control over your sexual relationship. Make
putting on the condom part of your sexual play.
Discuss your experiences with condoms with
other people.
HIV
Feel
Safe
Hygienic
STIs
Sometimes condoms break. The main reason
condoms break is because they are not put
on correctly.
82
It is much more risky to have ‘dry sex’ anally
or vaginally. Vaginal dry sex means having sex
while the woman does not produce enough
vaginal fluids. Her vaginal membrane can easily
be injured and can get small tears. This makes it
more likely that she can be infected with HIV.
Other ways to practise safer sex
Many couples also concentrate on long nonpenetrative sex. This can include stroking,
massaging, kissing, oral sex and mutual
masturbation. This is often called foreplay,
meaning that it comes before intercourse.
Enjo
forep y
lay
Safe sex can’t be guaranteed
Using condoms correctly
Lubricant
Sex during menstruation vs ‘dry sex’
From a medical point of view, there is no
problem with sex during menstruation. Provided
you use a condom, it is perfectly safe to have
intercourse with a woman who is menstruating.
Sex during menstruation might even help a
woman relax, reduce her menstrual pains and
speed up the menstruation.
Relax
Respect
Many people who use condoms for penetrative
sex do not like oral sex with condoms. It is safer
to use a condom, but the risk of transmitting
HIV if you don’t use a condom for oral sex is
much lower than it is for penetrative sex.
Lubricants, such as body lotion, should be used
liberally with condom use. However, do not use
oil-based lotions, like baby oil or paraffin jelly
(Vaseline), as these can break the condom.
Unfortunately there are no guaranteed ways
to have safe sex; we can only provide guidelines
on practising safer sex. Whatever you do, there
always remains a tiny chance of transmission
of some germs, including HIV.
nce
a cha
Always
Make sure the condom is rolled up as it came
in the package. Apply a lubricant to the tip of
the condom and roll it down the penis until the
penis is fully covered.
83
The ‘blame game’?
In many traditions, women are wrongly blamed
for STIs and HIV. However, men are often
responsible for spreading STIs and HIV. Often
it is men who refuse to use condoms or who
have unprotected sex outside their steady
relationships. Often it is men who force women
to have sex, even if they say no.
If you contract HIV through consensual sex, try
and accept the illness. Start with a new outlook
Family planning
on life. Continue using condoms to make sure
that you do not infect anybody else or get
sexually transmitted infections. Find out about
the best way to inform your partner and counsel
him so that he does not infect anybody else.
If you become infected as a result of being
raped, do everything possible to get the
rapist prosecuted.
t
u
b
,
n
u
F
e
v
a
H it Safe!
Keep
Condomise every time when having penetrative sex.
Condoms are a physical barrier to HIV and STIs.
They will also help to prevent pregnancy.
84
Condoms are the best protection against
HIV. However, they are only 98% effective
against pregnancy. That is why you should still
use other contraception. If your method of
contraception causes irregular bleeding or other
side effects, change to another form of family
planning. Do not stop using contraception.
If you become pregnant and you are not ready
to have a baby you could consider an abortion
(also called a termination of pregnancy, or
TOP). Remember, it is better to have a child
that you have planned and can look after than
to force yourself to go ahead with having a
baby because you feel guilty or you are worried
about what people at your church or other
people will say if you terminate your pregnancy.
By South African law, a girl or woman can
choose to terminate her pregnancy at a
registered clinic. A woman’s parents or partner
does not have to give consent. The earlier you
decide to attend the clinic to have your TOP,
the easier the method of TOP will be.
A woman has the right to choose TOP and her decision should
be respected.
Termination of pregnancy (TOP)
If you are less than 9 weeks pregnant, you can choose to terminate
your pregnancy by swallowing tablets only. This is called ‘medical
abortion,’ and you can ask for the tablets at a primary health clinic.
What happens
at the clinic?
If you are less than 3 months pregnant, you can terminate your
pregnancy through a simple procedure at a primary health clinic.
If you are between 3 and 5 months pregnant, you will be sent to a
hospital to terminate your pregnancy.
If you are more than 5 months pregnant, the termination of pregancy
is not possible.
What happens
after the
procedure?
You willl experience a little staining on your pad for a couple of days,
followed by a slightly heavier loss of blood which is more like a period
(but this is not actually your first period). You may lose a few blood
clots and experience occasional cramps, this is normal and nothing to
worry about.
After TOP, when
should you attend
the clinic?
Visit the clinic two weeks after your TOP for a check up. You should
come to the clinic sooner if you experience any problems or have any
symptoms you are worried about.
Advice on
contraceptives
There are many different ways to prevent an unwanted pregnancy,
including condoms, contraceptive pills, the injection or the loop (IUD).
Staff at the clinic can advise which method is best for you.
85
Disclosure
If you have been diagnosed HIV positive,
then you will need to think about disclosure.
Disclosure means telling someone else that
you are HIV positive. The right to privacy is
protected in South Africa’s Constitution, which
means you have the right to decide whether to
tell others your status and who to tell.
This right to privacy extends to your work place.
According to legislation, people in South Africa
are not required to disclose their HIV status to
their employer and are protected from unfair
discrimination if they do choose to disclose
their status, or if their status becomes known.
However, when you start ARVs at a government
clinic or hospital, you will need to tell one other
person. The reason for this is to ensure that you
have support in starting and adhering to your
treatment. You can decide who this person is.
While it is not legally required, disclosing your
status to your sexual partner or partners is very
important. This will allow you and your partner
to take the steps you need to protect your own
and each other’s health. If you are a woman
and you fall pregnant, you may find it difficult
to provide your baby with the medicines he
or she needs to protect him or her from HIV
transmission, unless you disclose your status to
your partner.
Below are some tips from people
who have disclosed their status:
Fred said:
‘I took my girlfriend out on a date for a nice
meal. When we came home I asked her what
she knew about HIV. After I told her about HIV,
I disclosed my status. She cried for an hour after
she found out and I told her I loved her. I asked
her whether she could still be with me, knowing
my status. She said yes. I asked her to go for a
test and she said she would go when she was
ready. Today we are married!’
As well as disclosing to loved ones, some
people living with HIV choose to disclose their
status publically and live openly with HIV.
This brave step can have inspiring results in
encouraging others to get tested and disclose
their status.
Lihle tells her story:
‘My disclosure did not end with my family.
I became open to everyone who would come
and see me. I first publicly disclosed at my
church and also got support from them. This
enabled other people to be open about their
statuses to me as well. Some were encouraged
to go and test. Many tested HIV positive and
were able to get assistance in terms of having
their CD4 cell counts done and accessing ARVs.
I sometimes think how many people would
have died, had I not disclosed my status.’
Grandmother
Mother
Widow
Community health worker
Living with HIV/Aids
Mbali said:
‘I asked my boyfriend to come with me for
couples testing at the clinic. The tests came
back and we were both positive. The nurse gave
us a lot of information and, while we are not yet
eligible for treatment, we know when we need
to start.’
86
Gwen Dumo
Photo by Eric Miller
87
Attending the clinic
Having a good relationship
with your nurse or doctor
is important. It is also
important for you to
get as much information
from them as possible, so
that you can understand
everything about HIV and your choices and
options. But medical professionals are not
always used to patients who are impatient
for information!
You will probably only see a nurse or doctor
for a few minutes each month.
Try and make the best use of this time.
•Attend the clinic together with your partner, advocate or friend.
•Try to find a doctor and/or nurse you feel comfortable with.
•Try to always see the same doctor and/or nurse.
•Be open with the doctor/nurse and tell her/him exactly what you feel. Be honest! Remember, doctors and nurses are required to keep everything you tell them confidential.
•Insist on privacy if you feel that other people are listening.
•If your nurse or doctor does not speak your language and you are not comfortable speaking in English, insist on seeing the doctor with someone who can speak
your language. You have to be able to communicate well. If the clinic does not
provide staff to assist you, ask a family
member or a friend from the support group
to join you and translate for the doctor.
88
Support groups
• The doctor will only be able to ask all
the necessary questions if she or he can
understand you well. You will also understand
better what the doctor says if someone is
there to translate.
•Sometimes you might forget to ask
something. Write down the things you want to
ask before your appointment.
•Keep a diary in which you tick off every time
you take your medication. Also note the
days when you have a headache, a fever, bad
cough, runny tummy or when you menstruate.
Monitor your own weight and write down
everything you eat two days a month. Your
nurse or doctor will notice that you care for
your health, which will encourage her or him
to explain more.
•Ask the nurse or doctor what she or he finds
when examining you. Ask about all results
from special tests (X-rays, blood tests). Ask
about your medicines and remember their
names. If the nurse or doctor does not answer
questions, explain that it is your right to know.
It is your health and your body. You don’t only
need medicines; you also need to understand
everything that is going on with your body.
Make the best use of the time you spend
waiting to see the nurse or doctor. You can learn
a lot from talking about your problems with
other HIV-positive people while you are waiting
to see your nurse or doctor. Use your time in the
waiting room to make friends and learn more
about HIV. Other people living with HIV often
find it easy to understand your problems. Speak
to your counsellor about the things that concern
you. Make sure you join an active support group.
Once you are open about your HIV status you
will learn much more. This will help you to stay
healthy. Assist other people with their problems.
In a support group people with the same
problem find ways to cope with and conquer
the problem. For example, people with cancer
form support groups to help each other
cope. People who have survived traumatic
experiences like rape or other forms of abuse
come together to discuss their problems and
find coping strategies.
Many support groups are formed through clinics
and hospitals. At these places, when one of the
support group members is sick, she or he can
easily get medical help. Referrals of people
who are newly diagnosed are also easier.
However, support groups can also be formed
at schools, workplaces, churches, youth clubs
and people’s houses.
With people who are HIV positive, support
groups have to go beyond psychological
support and have to also focus on improving
services and care. We also have to ensure our
rights are respected.
Support groups should be practical yet
empowering. Strengthen the group by linking to
other organisations with expertise. For example,
if one of your group members has a problem
with an abusive partner, you can contact
Network on Violence Against Women to find
help. As a group, you have the ability to fight to
change things for the better.
Support groups should encourage awareness
and openness about HIV. Discrimination is
a result of ignorance and support groups
can help fight discrimination. They can help
to enlighten people that HIV is not a death
sentence. Support groups can help to overcome
fear of rejection by spouses, family and friends.
Support groups can bring hope.
Disclosure, especially to one’s family, can be
difficult. Talking to other people who are living
with HIV can help. Support groups can help you
with difficult disclosure issues. Some groups
have special days where everybody invites a
partner or parent to do community education.
When men and women mix in a support group,
men will sometimes dominate and women will
feel disempowered. This defeats the purpose
of the support group. Also, some men feel they
will not be able to talk about ‘male-specific
issues’ in front of women. So, sometimes
men and women prefer to be in separate
support groups. There is nothing wrong with
this, as long as exclusivity is not based on
discrimination against other people.
89
TAC provincial offices
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Eastern Cape office
Embassy Building, Room 18
Jacaranda Street
Lusikisiki 4820
Tel: 039 253 1951
Contact: Noloyiso Nthamehlo
noloyiso@tac.org.za
Free State office
Contact: Machobane Morake
machobane.morake@tac.org.za
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90
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Gauteng office
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Tel: 011 872 1405
Contact: Stephen Ngcobo
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KwaZulu-Natal office
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Contact: Mzamo Zondi
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Contact: Amukelani Maluleke
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Office 4 and 5
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Khayelitsha
Cape Town 7784
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Contact: Fredalene Booysen
fredalene@tac.org.za
021 422 1700
91
Glossary
acquired immunodeficiency
syndrome (AIDS)
This is the latest or last stage of HIV. You have
AIDS if your CD4 count is under 200 or if you
have an opportunistic infection, such as Kaposi
sarcoma, extra-pulmonary TB, pneumocystis
carinii pneumonia or toxoplasmosis stroke.
antiretroviral treatment (ART)
Standard antiretroviral therapy consists of the
combination of at least three antiretroviral
(ARV) drugs to maximally suppress the HIV
virus and stop the progression of HIV disease.
Bacille Calmette Guerin
(BCG) vaccine
Introduced in the 1930s, this vaccine is given
to newborns to prevent the development of
deadly forms of TB, like TB meningitis. The BCG
vaccine is effective for preventing some forms
of TB in children. It is not able to prevent adults
or children from developing pulmonary TB.
CD4 count
A marker used to measure how strong your
immune system is. Healthy CD4 counts are
greater than 800 cells/mm3 of blood. You
should start antiretroviral treatment when your
CD4 count falls below 350 cells/mm3.
92
chest X-ray
A picture of the inside of your chest, which
shows your heart, airways, lungs, blood vessels,
lymph nodes and the bones of your chest and
spine. This is a diagnostic tool used to identify
the cause of lung conditions, including TB.
culture test
generic
A test used to look for the presence of bacteria,
like TB, in sputum or other bodily fluids. While
the test is very accurate, it’s also very timeconsuming, often taking 6–16 weeks.
A version of a drug not manufactured by
its patent owner. Generics are much cheaper
than brand-name drugs and are usually as safe
and effective.
direct observation treatment
short course (DOTS)
GeneXpert (Xpert MTB/RIF)
A strategy developed in the 1990s by the World
Health Organisation to treat TB and prevent the
development of drug-resistant TB.
cotrimoxazole (Septra and Bactrim)
drug sensitivity test
Antibacterial agent that comprises of two
drugs (trimethoprim/sulfamethoxazole) often
given to HIV-positive patients to prevent and
treat opportunistic infections such as PCP
and toxoplasmosis.
A form of culture test used to find out if TB
bacteria are resistant to specific antibiotics. The
test is used to diagnose MDR-TB and XDR-TB.
cryptococcal meningitis
An opportunistic condition caused by
the fungus cryptococcus neoformans and
involving the membranes surrounding the
brain and spinal cord. Symptoms may include
severe headache, confusion, sensitivity to light,
blurred vision, fever and speech difficulties.
Left untreated, the disease can lead to
coma and death. Standard treatments are
amphotericin B (as induction therapy) and
fluconazole (as maintenance therapy).
cytomegalovirus (CMV)
A herpes virus infection that causes serious
illness in people with AIDS. CMV can develop in
any part of the body but most often appears in
the retina of the eye, the nervous system, the
colon or the oesophagus.
extra-pulmonary TB
A form of tuberculosis infection that develops
in parts of the body other than the lungs. It
is more common in children and HIV-positive
people.
extensive drug resistant
tuberculosis (XDR-TB)
A form of TB bacteria that is resistant to
isoniazid; rifampicin; any flouroquinolone, like
moxifloxacin; and any injectable TB antibiotic,
like kanamycin. XDR-TB cannot be treated with
the most important first and second line TB
antibiotics.
fixed dose combination (FDC)
When two or more drugs are combined
together in one pill, capsule or tablet. Since
2013, the South African public health sector has
provided three different kinds of FDCs: Atroiza,
Odimune and Tribuss. All three contain efavirenz
(EFV), emtricitabine (FTC) and tenofovir (TDF).
An automated diagnostic test that can
identify mycobacterium tuberculosis (MTB)
and resistance to rifampicin (RIF). The test is
very accurate and gives results in less than
two hours.
hepatitis
Inflammation of the liver caused by microbes
or chemicals. Often accompanied by jaundice,
enlarged liver, fever, fatigue and nausea and
high levels of liver enzymes in the blood.
hepatitis A infection
A virus-induced liver disease caused by
hepatitis A virus (HAV). Hepatitis A is acquired
through ingesting faeces-contaminated water or
food or engaging in sexual practices involving
anal contact.
hepatitis B infection
A virus-induced liver disease that usually
lasts no more than six months, but becomes
chronic and life threatening in 10% of cases.
The highly contagious hepatitis B virus (HBV)
can be transmitted through sexual contact,
contaminated syringes and blood transfusions.
hepatitis C infection
A virus-induced liver disease caused by
hepatitis C virus (HCV). It is more likely than
hepatitis B to become chronic and lead to liver
degeneration (cirrhosis).
93
human immunodeficiency
virus (HIV):
The virus that causes AIDS.
isoniazid preventive therapy
(IPT) or tuberculosis prophylaxis
A regimen of isoniazid (INH) for six months,
which is used to cure latent TB infection.
IPT kills latent TB and therefore prevents the
development of active TB. IPT should only be
given to people with absolutely no signs of
active TB. It is especially important for people
who have HIV or who are in close contact with
others who have active TB.
Kaposi sarcoma (KS)
An AIDS-defining illness, consisting of individual
cancerous lesions caused by an overgrowth of
blood vessels. KS typically appears as pink or
purple painless spots or nodules on the surface
of the skin or oral cavity. KS also can occur
internally, especially in the intestines, lymph
nodes and lungs, and in this form is
life-threatening.
lactic acidosis
A rare but deadly metabolic disorder.
Symptoms can include weight loss,
fatigue, malaise, nausea, vomiting,
abdominal pain, shortness of breath
and low serum bicarbonate levels.
latent TB
opportunistic infection (OI)
toxoplasmosis (‘toxo’)
A form of TB in which the TB bacteria in the
body are dormant, meaning they are not
growing or reproducing. Latent TB has no signs
or symptoms, but can be diagnosed using the
tuberculosis skin test (TST). Latent TB can
develop into active TB if your immune system
is weakened and loses its ability to control the
TB bacteria in your body – this often happens to
people with HIV.
Infection or cancer that occurs in people with
weak immune systems. TB, pneumocystis
carinii pneumonia (PCP) and toxoplasmosis
are examples of opportunistic infections.
A life-threatening, opportunistic condition.
Toxo can affect a number of organs, but it
most commonly causes encephalitis (brain
inflammation) with characteristic focal lesions.
It is contracted by eating contaminated
undercooked meat. Symptoms include
headache, confusion, fever, dementia and
paralysis. Standard treatment is a combination
of pyrimethamine and sulfadiazine or
cotrimoxazole in patients with CD4 counts
below 100.
lipodystrophy
Metabolic changes that can cause fat loss or
gain and/or alterations in blood sugar and/or
lipid levels. Lipodystrophy can be a side effect
of some ARVs.
lymphoma
An AIDS-defining illness, a cancer of the
lymphoid tissue, largely a solid tumour with
cells arising from proliferating lymphocytes.
Symptoms may include lymph node swelling,
weight loss and fever. Treatment involves
radiotherapy, chemotherapy or both, along
with HAART.
mother-to-child
transmission (MTCT)
The transmission of HIV during pregnancy,
labour or breastfeeding.
multi-drug resistant TB (MDR-TB)
TB bacteria that are resistant to the two most
important first line TB antibiotics – isoniazid
and rifampicin.
peripheral neuropathy
Nerve damage in the hands or legs and feet.
It can start with a burning or tingling feeling
or numbness in the toes and fingers. Peripheral
neuropathy can be a side effect of some antiHIV and TB drugs.
pulmonary TB
Active TB disease that develops in the lungs.
This is the most common form of TB. It is
usually diagnosed using a smear microscopy
test or GeneXpert test.
sexually transmitted infection (STI)
Any infection that can spread via sexual
contact. Examples include HIV, syphilis,
gonorrhoea and herpes.
smear microscopy
A diagnostic test used to detect TB bacteria
in the sputum. Sputum is collected from a
coughing patient and then looked at under a
microscope. If TB bacteria can be seen, the
patient is diagnosed smear-positive. If TB
bacteria are not present the person is smearnegative.
tuberculosis meningitis
TB that develops in the meninges, which are the
membranes that cover the brain and spinal cord.
TB meningitis is very deadly and most common
in children.
tuberculosis skin test (TST)
A diagnostic tool used to detect TB infection.
The TST is most useful for diagnosing TB in
children.
tuberculosis prophylaxis
See isoniazid prevention therapy (IPT).
viral load
Indicates the amount of HIV in your blood.
The more HIV you have in your blood, the
greater is your risk of developing symptoms
in the next few years.
sperm washing
Process which greatly reduces the chances of
HIV-positive men infecting their partners when
trying to conceive a child. The HIV is removed
from the seminal fluid during a centrifugation
process and then the ‘clean’ sperm are used to
inseminate the partner so neither she nor the
child will be infected with HIV.
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Photo by Samantha Reinders, courtesy of Médecins Sans Frontières
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