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The African Eye Voice
March - May 2007
FREE copy
GET TESTED &
SEEK TREATMENT
David Lammy MP
Treatment Interuptions
Save With ARVs
The UK’s First African HIV Treatment Publication
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The African Eye Trust
Suite107, Maddison House, 226 High Street, London, England CR9 1DF
Email: [email protected] | Website: www.africaneyetrust.org.uk
Registered Number: 06124839
contents
04
Growing Up with
African HIV Policy
Network
06
Message from the Editor
Lifetime
Commitment
Health as a domain is a much larger set, which includes
human biology, environment, lifestyle and healthcare organisation. One key
factor that is frequently pointed out by healthcare providers is the importance
of maintaining a good health. Increasingly, people have identified activities
associated with improving and maintaining good health.
When it comes to HIV treatment, I would not emphasize enough how pertinent
adherence to treatment is in achieving the aim of the treatment. Needless to
mention, taking the drugs exactly as prescribed plays a vital role in achieving
a fairly healthy life. Although, balancing the demands of daily life with strict
observation of prescribed treatment can be a challenging task for most people, I
would like to point out that as at present this is a lifetime commitment.
We have seen some new drugs coming through in the past two and half decades,
just recently the release of PREZISTATM by Tibotec, a division of Janssen- Cilag
Ltd. has been received with excitement. Prezista also known as darunavir or
TMC 114 is a protease inhibitor which is co administered with 100mg ritonavir in
combination with other anti-HIV drugs. It is recommended in highly pre-treated
adult patients who failed more than one regimen containing a PI.
Save with ARVs
With diligent research, I hope and believe that sooner or later more treatment
options which are not to be taken for life will be available.
12
The African Eye Trust would like to extend a warm welcome to all our readers
in 2007 and our sincere thanks to the following individuals and organisations:
Elijah Amooti (Founder), Winnie S. Sseruma (Senior Advisor) as well as the entire
production team. Organisations include NAM, AHPN and i-Base, Healthfirst,
without whose support this publication would not be possible. Lastly we would like
to thank all our funders for their continued support and look forward to another
exciting and productive year.
Sincerely
Minister of Culture
Gets Tested
22
Editor in Chief
Dr. Melba N Mangolwa MD, MPH
Production Team
Editor in Chief
Dr. Melba N Mangolwa
Editor
Gertrude Kamya Othieno
Graphic Designer
Ian Lynch
Nutrition: a positive
approach
Editorial Group
Zoe Smith
Elias Phiri
Elijah Amooti
Dean. W. Thomson
Deidre Love
African Eye Trust Advisors
Badru Male
(Techinical Advisor)
Winnie S. Sseruma
(Senior Advisor)
Simon Collins
(Editorial Board Advisor)
Cheikh Traoré
(Health Promotion Advisor)
Gertrude Othieno
(Reaserch Advisor)
All opinions expressed and photos published remain the property of the African Eye Voice
Growing Up with
African HIV Policy Network
Charles Oduka, Chairperson AHPN
The African HIV Policy Network marked its
tenth anniversary with an event that acknowledged the hard work done by the many
African Community Based Organisation that
make up its network and to recognize the
hard work that still lies ahead in tackling the
impact of the HIV epidemic in our communities. The effects of HIV related stigma and
discrimination; the reduction of resources
to combat the epidemic and the increasingly harsh legislative response to HIV can
feel that despite our struggles the obstacles
can seem insurmountable. Isolation, destitution, violence, rejection, and the threat of
prosecution, deportation and being denied
access to treatment shape the lives of many
of those living with and affected by HIV in
our communities. In face of these struggles
it is imperative that we forge stronger partnerships locally, regionally and nationally
to raise our voices against the oppressive
response to the epidemic.
The HIV epidemic has a black face with
recent evidence from UNAIDS demonstrating that Africa bears the brunt. Similarly, the
virus continues to disproportionately affect
the African communities in the UK. In my
role as the Chair of AHPN, I am committed
to ensuring that the strategic objectives of
the organisations as agreed for 2007-10
are brought to fruition.
My priorities for 2007 are four fold
• to ensure that voice of the African
community affected by HIV/AIDS
gets continued recognition by policy
makers of the vital importance of
engaging African communities in the
UK to ensure the success of policies to
contain the HIV epidemic.
• Strengthen the capacity of community
groups to enable them to play their
part as key stakeholders in the struggle
against HIV/AIDS especially at this time
when commissioning arrangements
are changing. We need to ensure that
community groups are empowered
to become key providers of HIV/AIDS
services.
• Ensure that people living with HIV/
AIDS continue to be an integral part of
AHPN’s work
• Strengthen partnership work,
identifying new opportunities for
partnership and raising AHPN’s profile
as a key community voice bringing
expertise and experience into the
struggle.
Without doubt the responsibility is on us to
combat the effects of the epidemic. As such
it is important that we continue to share our
learning with those in the African Diaspora
in Europe and in the continent by sharing
our experiences of shaping and informing
policy and practice.
In our attempt to implement the AHPN’s
3 year strategic plan the board will be
meeting with all the African forum membership to discuss ways in which together we
can ensure that resources match the need
and the policy environment is less hostile
to African people living with and affected
by HIV.
(L-R) Dr. Max Sesay, Chief Executive Officer AHPN, Masi Cooper, Vice Chair AHPN, David Lammy MP, Charles Oduka, Chairman AHPN
4
issue 5
feature
African Eye Voice
for hiv information
Treatment Interruptions
Having a break from treatment
is no longer a ‘smart’ idea
Michael Carter, News and Patient Information Editor, NAM
What is a treatment interruption?
An interruption from treatment, often called
a treatment ‘break’ or a treatment ‘holiday’,
is when a person living with HIV, usually in
agreement with their doctor, stops taking
HIV medication for a designated period of
time.
Why ‘break’ from treatment?
Taking anti-HIV treatment appears to need lifelong commitment with the currently available
drugs. What’s more, it is essential to take at
least 95% of the doses of HIV treatment at the
right time and in the right way for them to work
effectively and to avoid HIV becoming resistant to them. Many people find this daunting or
impossible.
The side-effects of anti-HIV treatment are
also a big concern. In particular, it is known
that longer-term anti-HIV treatment can cause
side-effects such as changes in body fat distribution and increases in levels of blood fats
(lipodystrophy), which can lead to an increased
risk of heart disease and stroke. It had been
hoped that limiting the amount of time a
person spent on HIV treatment would be a way
of reducing the risk of these developing.
Recognising this, studies were undertaken to
investigate if treatment breaks helped reduce
side effects, without increasing the risk of
illness or the emergence of drug-resistant HIV.
What the studies show:
Two recent studies have shown that treatment
interruptions are now no longer considered a
safe or effective method of helping manage
HIV and your health.
The SMART Study
The SMART (Strategies for the Management of
Antiretroviral Therapy) study recruited people
taking anti-HIV treatment with a CD4 cell
count above 350 cells/mm3. Patients were
randomised into one of two treatment arms:
the first continued to take anti-HIV therapy as
normal, the other stopped treatment, restarting when their CD4 cell count fell to around
250 cells/mm3 (the point where people start
to become more vulnerable to serious infections), and then stopping again when their CD4
cell count once again reached 350 cells/mm3
and so on. Among other things, the researchers wanted to see if people taking treatment
breaks remained well, and how many avoided
African Eye Voice
the side-effects of anti-HIV drugs.
However, in January 2006 the study was
stopped early because 4% of people who
interrupted their anti-HIV treatment experienced disease progression compared to only
2% of people who took their HIV drugs all the
time. Although there is not much difference in
these absolute rates, the difference was highly
statistically significant, and the researchers
estimated that those taking treatment breaks
were more than twice as likely to become ill
or die than those taking continuous HIV treatment.
As well as an increased risk of HIV disease progression, people taking treatment breaks also
had an increased risk of adverse events such
as cardiovascular disease, and kidney or liver
disease. This was a surprise, as these conditions can be side-effects of anti-HIV treatment
and the study’s researchers expected to see
more of these illnesses in people taking HIV
treatment all the time.
It is thought that a reason why people taking
treatment breaks experienced more illness
was because they spent more time with low
CD4 cell counts, increasing the risk of HIV
disease progression.
The DART study
Shortly after the SMART study was stopped,
the treatment interruption arm of another
study was also terminated (although the main
aspect of the study looking at the monitoring
of HIV disease progression will continue).
Researchers were looking at fixed cycles of
anti-HIV treatment in people who had achieved
a CD4 cell count of 300 or more. In the DART
(Development of Anti-Retroviral Therapy in
Africa) study people with a CD4 cell count of
over 300 were randomised to either receive
continuous HIV treatment or to take twelveweek cycles of HIV treatment followed by
twelve-week breaks. However, the treatment
interruption arm of the study was stopped
early and all patients advised to switch to
continuous treatment when the researchers
noticed that people in the treatment cycle
arm were more likely to develop HIV-related
illnesses. All the people in the treatment interruption study had a CD4 cell count above 300
cells/mm3 when they entered it, but many had
had a low CD4 cell count before starting HIV
treatment and the DART doctors concluded
feature
that twelve week cycles of treatment followed
by interruptions were unsafe for people who
started HIV treatment with a CD4 cell count
below 200 cells/mm3 or a history HIV related
illness.
What could happen if I take a break from
my treatment?
• Rising viral load and falling CD4 could
present a risk of infections or other
illness.
• Though many people regain lost CD4
cells and re-suppress their viral load once
treatment is re-started, these may not
fully return to the levels achieved before
the interruption.
• Some people experience flu-like
symptoms during a rebound in viral load.
• The rebound in viral load could reseed viral reservoirs which had been
diminished by treatment.
• Anti-HIV drugs differ in the speed at
which they leave the body, and these
uneven, low drug levels can result in drug
resistance. It may be unsafe to stop some
drug combinations abruptly, particularly
those that include efavirenz or nevirapine.
Seek your doctor’s advice on the drug
combination you are taking.
• Rather than improving quality of life,
cycling on and off treatment may reduce
it. The ‘habit’ of adherence may need to
be re-learnt, and side-effects may need to
be re-endured with each interruption.
• There have been cases of people being
superinfected (or reinfected) with a
different strain of HIV whilst taking a
treatment break.
What are your options?
Do not stop taking treatment without consulting your doctor. If you are thinking of taking a
break from your anti-HIV drugs speak to your
doctor about how advisable and safe it is for
you to do so, and if you are currently taking a
break from treatment make sure that you go to
your HIV clinic regularly to have your CD4 cell
count, viral load and health closely monitored.
If you are finding taking your treatment difficult or are experiencing side effects mention
these to your doctor. Your doctor will be able
to help.
www.aidsmap.com for more information
issue 5
5
Save with ARVs
Dr. Jeanette Meadway
HIV Consultant
If I had to sum up the current UK health
promotion message about HIV, it would
be “Get tested! There’s treatment if you
need it, and it works!” and “Be safe. Use
a condom.” The emphasis is on living a
normal life, and respecting people’s lifestyle choices. We may join in encouraging
our friends to be tested for HIV and to
consider antiretroviral (ARV) treatment if
they need it, particularly pregnant women
who can almost completely prevent transmission of HIV to their child.
But for those of us who hear from friends
and family in Africa, the message coming
to us seems confusing. In many places the
health promotion is quite separate from
any treatment facilities, and the message
seems to have no mention of the possibility of treatment. What is coming over loud
and clear is the need for a major life-style
choice: abstinence. This is followed by
being faithful to a partner. The old tried and
tested ABC message is still being taught.
ABC stands for Abstinence until marriage; Be faithful to your partner; use a
Condom. But in many places, the message
has been shortened or modified, to AB
or ABc. Condoms are not suggested as a
means of preventing transmission of HIV, or
doubt is cast on their effectiveness. I have
heard teaching for adolescents in Uganda
where condoms are dismissed as totally
unreliable. The message of that particular
talk could easily have been taken to mean
that extramarital sex was immoral, but that
using a condom was worse.
Abstinence and being faithful to one partner
is a life-style choice which churches and
other religious organisations teach as a
moral issue. But abstinence and being faithful have completely failed to protect vulnerable people from HIV. More than 50% of all
people with HIV are women, and more than
50% of them are monogamous. They tried
abstinence, they tried being faithful; it didn’t
work, it didn’t protect them.
In addition to failing to protect people from
HIV, an overemphasis on ABC also leads to
6
issue 5
increased stigma. There is the implication
that if you are infected with HIV or use a
condom, you must have failed to be abstinent or faithful. HIV, and use of condoms,
becomes
equated
with
immorality.
Increased stigma makes it more difficult for
people to access HIV services or condoms,
and can result in increased spread of HIV.
The ABC campaign has been assumed by
many to be the cause of a reduction in
the prevalence of HIV in countries such as
Uganda. But other interpretation of events
is possible, and those who have studied the
issue closely may come to a very different
conclusion; for instance in the article “Was
the “ABC” Approach (Abstinence, Being
Faithful, Using Condoms) Responsible for
Uganda’s Decline in HIV?” by Elaine M.
Murphy, Margaret E. Greene, Alexandra
Mihailovic, and Peter Olupot-Olupot, in PLoS
Medicine 15th September 2006. This is
published as open access on-line allowing
you to download the full article
http://medicine.plosjournals.org/perlserv/
?request=get-document&doi=10.1371%2Fjourn
al.pmed.0030379
ary school which had no accommodation
for its students. Over 80% of girls failed
to complete their studies, and the main
reasons were pregnancy and marriage.
I saw the slum dwellings where the girls
stayed in term-time, with no access to
running water and far from a latrine; and
the porridge they cooked as their only food.
Their families could give them very little
money; unsurprising that some would go to
a man who offered something extra in their
lives, maybe even money or food. Many of
the young girls who have unprotected sex
do so because of lack of choices. These
girls would prefer a hostel to stay in where
they were safe and could study, so that they
could complete their education. President
Bush’s money would be far better spent on
a hostel for the girls than on preaching at
them about abstinence. Through the charity
MforM we are fundraising for a hostel for
them; the first instalment has been raised
but more is needed. Contact me if you
would like to contribute.
That is only one example of limited choices
for women. Those living in poverty have no
opportunity to insist on any formal marriage,
and the only relationship possible may be
Yet abstinence-only programmes are increasingly being used in sixteen countries
where there is PEPFAR funding from the
USA (President Bush’s Emergency Plan For
AIDS Relief). The USA legislation for PEPFAR
requires that 33% of funding for HIV prevention goes on abstinence until marriage programmes. Human Rights Watch says that
they “withhold or distort information about
any method of HIV prevention other than
abstinence, and even discourage young
people from using condoms by exaggerating
their (very low) failure rates or saying that
they don’t work at all.” See their website
for more information (http://hrw.org/
campaigns/aids/2005/uganda/facts.htm).
Why I find abstinence-only programmes so
objectionable is that they so dismally fail
to protect those who are vulnerable, not
only to HIV but also to violence, abuse and
neglect. In East Uganda I visited a second-
feature
In a space the area of one
double bed two girls sleep,
cook, eat and study.
African Eye Voice
Girls who live in the slums through school term; most will not
complete their education because of pregnancy or marriage
one where violence is seldom far away, and
where the man dictates everything that
will happen, especially when it comes to
condom use. Preaching at these women
about abstinence and being faithful will
never help them; they need empowerment
to control these aspects of their lives.
So what should be our message? Not just a
negative “Don’t have sex” but a positive “Be
tested! HIV treatment works!” and “Protect
yourself and others in a way that is effective”. No HIV message is complete, or even
ethical, if it does not speak of treatment.
The danger is that the PEPFAR message
is mistaken for the Christian approach to
HIV. Fortunately there are Christian organisations which base their teaching on the
facts about HIV, and compassion for those
infected and their families. Ugandan priest
Canon Gideon Byamugisha is an inspiring speaker who is enthusiastic about HIV
treatment and reducing the stigma of HIV,
and talks openly and encouragingly about
condoms. He has founded an organisation
called “Strategies for Hope” to further this
teaching (www.stratshope.org).
African Eye Voice
The charity Christian Aid has launched a
campaign based upon the belief that HIV is
a virus, not a moral issue. It is refreshing to
hear this message from a Christian charity
linked with projects in many developing
countries. ABC is out, SAVE is in.
S – Safe Practices
A – Available medications
V – Voluntary counselling and testing
E – Empowerment
Access to testing and treatment is a high
priority, and the suggested “safe practices”
include a realistic approach to prevent
spread of HIV by looking at each of the ways it
is known to be transmitted, with abstinence
just one option quite far down the list. You
can read more details on the Christian Aid
website. http://www.christian-aid.org.uk/
news/media/pressrel/060321p.htm
So for your family and friends in the UK, the
message is the same as for the family and
friends in Africa. “Get tested! There’s treatment if you need it, and it works!” and
“Be safe. Use a condom”
feature
Pictures in this article and articles
by Jeanette Meadway in previous
and in future editions of African
Eye are published with permission
and remain the property of the
owner. For previous editions the
owner is Jeanette Meadway apart
from a picture in the last edition
where an attribution to Richard
Collins was omitted in error.
Jeanette Meadway is a physician
who has worked in the HIV field since
the 1980s, from 1997 at Mildmay
Mission Hospital. She is chairman
of Medicines for Muheza, (M for M)
and. trustee Kisakye Children’s Trust
(www.kisakye.org), charities working
in Africa, including medical care and
courses for HIV clinicians. Her ninth
visit to Africa was to run the HIV course
“Mbale 2006”in Uganda in November.
Medicines for Muheza
is a registered charity no 288061
4 Glebe Avenue, Woodford Green,
Essex IG8 9HB;
email: [email protected]
issue 5
7
Q Treatment
Questions and Answers
by Elijah Amooti
Q
Is there treatment for HIV/
AIDS?
For many years, there were no effective
treatments for AIDS. Today, a number of
drugs are available to treat HIV infection
and AIDS. Some of these are designed
to treat the opportunistic infections and
illnesses that affect people with HIV/AIDS.
In addition, several types of drugs seek to
prevent HIV itself from reproducing and
destroying the body’s immune system:
Reverse transcriptase inhibitors attack an
HIV enzyme called reverse transcriptase.
These come in two types, nucleosides
(NRTIs) and non-nucleosides (NNRTIs).
Protease inhibitors attack the HIV enzyme
protease. Fusion inhibitors stop virus from
entering cells. To date, only one fusion
inhibitor, enfuvirtide, has been approved by
the European Medicines Evaluation Agency
(EMEA).
We are expecting two or three new drugs
to be approved by the EMEA this year: they
are included on the table below.
See below for the table of drugs: note that
all drugs have at least two names, and
there are some pills that are combinations
of drugs too.
Many HIV patients take these drugs in
combination-a regimen known as highly
active antiretroviral therapy (HAART).
When taken as directed, anti-HIV
treatment can reduce the amount of HIV
in the bloodstream to very low levels and
sometimes enables the body’s immune
cells to rebound to normal levels.
Several drugs can be taken to help
prevent a number of opportunistic
infections including Pneumocystis carinii
pneumonia, toxoplasmosis, cryptococcus
and cytomegalovirus infection. Once
opportunistic infections occur, the same
drugs can be used at higher doses to treat
these infections, and chemotherapy drugs
are available to treat the cancers that
commonly occur in AIDS.
8
issue 5
Generic name
Brand name
Other name(s)and notes
Nucleoside Reverse Transcriptase Inhibitors (NRTIs)
Abacavir
Ziagen*
*Also in Kivexa and Trizivir
Didanosine
Videx
ddI
Emtricitabine
Emtriva*
FTC. *Also in Truvada and Atripla
(available soon)
Lamivudine
Epivir*
3TC. *Also in Combivir, Kivexa and Trizivir
Stavudine
Zerit
d4T
Tenofovir
Viread*
TDF. *Also in Truvada and Atripla
(available soon)
Zidovudine
Retrovir*
AZT. *Also in Combivir and Trizivir
Non-nucleoside Reverse Transcriptase Inhibitors (NNRTIs)
Efavirenz
Sustiva*
*Also in Atripla (available soon)
Etravirine†
TMC125. †Available soon.
Nevirapine
Viramune
Protease inhibitors (PIs)
Atazanavir
Reyataz
Darunavir
Fosamprenavir
Prezista
Telzir
Indinavir
Crixivan
Lopinavir
Nelfinavir
Kaletra*
Viracept
Saquinavir
Invirase
Tipranavir
Aptivus
Ritonavir‡
Norvir‡
Other classes
Enfuvirtide (Fusion inhibitor) Fuzeon
Maraviroc (CCR5 inhibitor)†
Researchers are continuing to develop new
drugs that act at critical steps in the virus’s
life cycle. Efforts are under way to identify
new targets for anti-HIV medications and
to discover ways of restoring the ability
of damaged immune systems to defend
against HIV and the many illnesses that
affect people with HIV. Ultimately, advances
in rebuilding the immune systems of HIV
patients will benefit people with a number
of serious illnesses, including cancer,
Alzheimer’s disease, multiple sclerosis, and
immune deficiencies associated with aging
and premature birth.
treatment
TMC114
*Also contains ritonavir
‡Not used as an anti-HIV drug in its own
right: ritonavir is used to ‘boost’ PIs
T-20
MK-0518/raltegravir (Integrase inhibitor
– available later this year)
†Probably available by the end of this year
Q
Is thee a vaccine to prevent
HIV infection?
Despite continued intensive research,
experts believe it will be at least a decade
before we have a safe, effective, and
affordable AIDS vaccine. And even after
a vaccine is developed, it will take many
years before the millions of people at
risk of HIV infection worldwide can be
immunized. Until then, other HIV prevention
methods, such as practicing safer sex and
using sterile syringes, will remain critical.
African Eye Voice
Q
Can you tell whether someone
has HIV or AIDS?
You cannot tell by looking at someone
whether he or she is infected with HIV or
has AIDS. An infected person can appear
completely healthy. But anyone infected
with HIV can infect other people, even if
they have no symptoms.
Q
How can I know if I’m infected
with HIV?
Immediately after infection, some people
may develop mild, temporary flu-like
symptoms or persistently swollen glands.
Even if you look and feel healthy, you may
be infected. The only way to know your
HIV status for sure is to be tested for HIV
antibodies-proteins the body produces in
an effort to fight off infection. This usually
requires a blood sample. If a person’s
blood has HIV antibodies, that means the
person is infected.
Q
Should I get tested?
Testing is recommended if:
• You think you may have been exposed
to the HIV.
• You are sexually active
• You are uncertain about your sexual
partner’s risk behaviours
• You have used street drugs by injection,
especially when sharing needles and/
or other equipment.
• You have a sexually transmitted disease
(STD), including pelvic inflammatory
disease (PID).
• You are pregnant. There are now
treatments that can greatly reduce the
risk that a pregnant woman who has
HIV will give the virus to her baby.
• You are a woman who wants to make
sure you are not infected with HIV
before getting pregnant.
Even if you have no risk factors for HIV
infection, you may still want to get tested to
African Eye Voice
ease your own mind. This also encourages
everyone to be more responsible about HIV
transmission.
You should get tested as soon as possible.
Here’s why:
• Even in the early stages of infection,
you can take concrete steps to protect
your long-term health. Regular checkups with a doctor who has experience
with HIV/AIDS will enable you (and
your family members or loved ones) to
make the best decisions about whether
and when to begin anti-HIV treatment,
without waiting until you get sick.
• Taking an active approach to managing
HIV may give you many more years of
healthy life than you would otherwise
have.
• If you are HIV positive, you will be able
to take the precautions necessary to
protect others from becoming infected.
• If you are HIV positive and pregnant,
you can take medications and other
precautions to significantly reduce the
risk of infecting your infant, including
not breast-feeding. To have an HIV test
please contact your Local Gum clinic.
Q
Is there a link between HIV
and other sexually transmitted
infections?
(as with chlamydia and gonorrhea). Where
there are breaks in the skin, HIV can enter
and exit the bloodstream more easily. But
even when there are no breaks in the skin,
STIs can cause biological changes, such
as swelling of tissue, that may make HIV
transmission more likely. Studies show that
HIV-positive individuals who are infected
with another STI are three to five times
more likely to contract or transmit the virus
through sexual contact.
Q
How quickly do people infected
with HIV develop AIDS?
In some people, the T-cell decline and
opportunistic infections that signal AIDS
develop soon after infection with HIV. But
most people do not develop symptoms
for 10 to 12 years, and a few remain
symptom-free for much longer. As with
most diseases, early medical care can help
prolong a person’s life.
Having a sexually transmitted infection (STI)
can increase your risk of acquiring and
transmitting HIV. This is true whether you
have open sores or breaks in the skin (as
with syphilis, herpes, and chancroid) or not
treatment
issue 5
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What is HIV
Mulongo Anne, Treatment Advocate, African Eye Trust
Q
What is HIV?
HIV stands for the Human Immunodeficiency
Virus. HIV attacks the body’s immune
system - the body’s defence against diseases. HIV, if detected early, can be treated
very successfully. There is still no cure
for HIV, however, with treatment; people
living with HIV will probably have a normal
lifespan, although serious health problems
may still occur.
It is important to stress out that if the treatment is taken properly, combinations of
different antiretroviral drugs can reduce
the amount of HIV in the blood as a result
reducing the risk of becoming ill or dying
because of HIV.
Q
What is AIDS?
AIDS stands for Acquired Immune Deficiency
Syndrome. AIDS is the most advanced stage
of HIV infection. An HIV+ person is considered to have AIDS when the immune system
has become weak with CD4+ cell counts
in the blood of 200 or less that it can no
longer fight off a whole range of diseases
with which it would normally cope. The definition also includes 26 conditions which are
known as Opportunistic Infections (OI) that
are common in advanced HIV disease but
rarely occur in healthy people. If HIV is diagnosed late, treatment may be less effective
in preventing AIDS.
Q
How is HIV passed on?
HIV is not transmitted via casual contact or
kissing. It can only be passed on through
exposure to HIV-infected blood, sexual or
rectal fluids, or breast milk.
The most common ways are via:
• Sexual intercourse with an infected
partner where blood or sexual fluids
like semen, vaginal or rectal secretions
enter the body through the penis,
African Eye Voice
vagina or anus.
• Sharing infected needles or syringes
when injecting drugs.
• From an HIV positive mother to her
child during pregnancy, childbirth or
breastfeeding. However, there are
proven steps mothers can take to
reduce the possibility of their unborn
child contracting HIV.
Less common ways are via:
• Oral sex - although the risks are much
lower than with sexual intercourse,
blood or sexual fluids may occasionally
enter the body via the mouth,
particularly if the uninfected partner
has gum problems or mouth ulcers.
• Unscreened and untreated transfusions
of blood or blood products. However, in
the UK all blood products are screened
for HIV and other blood-borne diseases.
• An accident in a medical setting, where
a healthcare worker is exposed to the
blood of an infected person, usually
during surgery or via a needle stick
injury.
You cannot get HIV from day-to-day
contact such as:
• Kissing
• Touching
• Holding hands
• sharing eating utensils
• Toilet seats
• Swimming pools
Q
What are the common HIV/
AIDS Symptoms
Many people do not develop symptoms after
getting infected with HIV. Some people have
a flu-like illness within several days to weeks
after exposure to the virus. They complain
of fever, headache, tiredness, and enlarged
lymph glands in the neck. These symptoms
usually disappear within a few weeks.
Following initial infection, you may have
no symptoms. The progression of disease
varies widely among individuals. This state
treatment
may last from a few months to more than
10 years.
During this period, the virus continues to
multiply actively and infects and kills the
cells of the immune system. The immune
system allows us to fight against the bacteria, viruses, and other infectious causes.
The virus destroys the cells that are the
primary infection fighters, called CD4+ or
T4 cells.
Once the immune system weakens, a
person infected with HIV can develop the
following symptoms:
• Lack of energy
• Weight loss
• Frequent fevers and sweats
• Persistent or frequent yeast infections
• Persistent skin rashes or flaky skin
• Short-term memory loss
• Mouth, genital, or anal sores from
herpes infections.
Nearly every organ system is affected.
Some of the common symptoms include
the following:
• Cough and shortness of breath
• Seizures and lack of coordination
• Difficult or painful swallowing
• Mental symptoms such as confusion
and forgetfulness
• Severe and persistent diarrhoea
• Fever
• Vision loss
• Nausea, abdominal cramps, and
vomiting
• Weight loss and extreme fatigue
• Severe headaches with neck stiffness
• Coma
People with AIDS are prone to develop
various cancers such as Kaposi sarcoma,
cervical cancer, and cancers of the immune
system known as lymphomas. Kaposi
sarcoma causes round, brown, reddish or
purple spots that develop in the skin or in
the mouth.
issue 5
11
Minister of Culture
gets tested
The African HIV Policy Network (AHPN)
is an alliance of African communitybased organisations and their supporters
working for fair policies for people living
with HIV/AIDS in the UK. The AHPN is the
only African organisation in the UK whose
work is dedicated to policy, advocacy and
representation at national level. Its major
focus is on HIV and the sexual health of
Africans in the UK.
their behalf is critical.
AHPN’s work focuses on mobilising and
strengthening communities so that they can
respond to HIV/AIDS themselves. The AHPN
is an initiative of people, forums, organisations and communities working towards
a shared vision by supporting effective
community responses to HIV/AIDS. AHPN
believes that effective advocacy must be
inclusive of the voice of those most vulnerable to HIV. Given the level of stigma that
exists within African communities and in the
wider social and political context advocacy
can mean exposing yourself as HIV positive
and/or a migrant. The conclusion for many
Africans living with and/or affected by HIV is
that participation in informing policy and advocacy activities can mean exposing oneself
to being discriminated against. As such the
AHPN’s capability to effectively advocate on
Rhon Reynolds, AHPN Senior Policy Officer
and Deputy CEO, commented, “Fear continues to drive the HIV epidemic underground,
particularly in African and other BME communities. It is our hope that David Lammy’s
decision to take an HIV test will encourage
others to follow suit – getting tested is a key
strategy to reducing infection rates. I am
grateful for the courage David Lammy has
displayed in tackling this issue head-on with
the community.”
by Elijah Amooti
AHPN’s Changing Perspectives campaign
seeks to encourage faith organisations, the
media, HIV positive people and government
to tackle HIV-related stigma and discrimination. In support of the campaign David
Lammy, MP for Tottenham, publicly took an
HIV test at St. Ann’s Hospital to highlight the
importance of testing.
The National African HIV Prevention (NAHIP)
programme, funded by the Department of
Health, is managed by the AHPN. Working
with community based organisations the
NAHIP programme has developed the
“Beyond Condoms” campaign. The campaign seeks to encourage debates within
David Lammy MP, publicly takes HIV test
communities not only of condom use but
also on other safer sex practices that
reduce the spread of HIV and promote the
building of a safer sex culture.
More information and resources about
AHPN can be found on www.ahpn.org or
www.nahip.org
DEVELOPING AND PROMOTING
POSITIVE, HEALTHIER AND HAPPIER LIFESTYLES
Following a series of life changing events, I decided to follow my heart and create a job that
would allow me to live the truth of my heart whilst at the same time helping others. Life
conspired with me and the vision for restorEgo was born.
Its been a lot of hard work, confusion and sometimes self doubt but I persevered. Now 3 years
later, with a lot of learning, the help of a committed and passionate team, family and friends,
restorEgo has finally crystallised into a Training Consultancy in its own right providing trainers,
facilitators and speakers in health education and enablement for both service providers and
service users and the many diverse communities they work and live within.
Thank you for believing in us and promoting our services. We couldnt have done it without you.
You can see how far we have traveled and learn more about the services we offer individuals
and organisations by visiting our website www.restorego.com
Thandi Haruperi, Founding
Director
March 2007
Upcoming restorEgo training events - April June 2007
further details at www.restorego.com Tel: 0208 657 0555
�� Train the trainer
�� Self Esteem and Assertiveness
�� Beyond Diagnosis (Living Well with HIV)
�� Putting Care into Practice Cultural Awareness for the Health Professional
12
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African Eye Voice
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Treatment
What The Drugs Do
Q
by Gus Cairns, counsellor and psychotherapist
Q
A
Dear African Eye
Treatment Expert
I am an African person living with HIV. I
am on medication, but I want to know the
meaning of the following. I have lived with
HIV for a long time but no person has ever
explained to me their meanings and how
these medications work in the body.
• ATRIPLA
• Maraviroc
• TMC 144
• KALETRA
• Veramune
• Truvada
• Fuzeon inhibitors
Dear Amelia,
Well, there’s quite a lot there to explain, but
I believe in answering people’s questions
first, so here goes:
•
•
•
Many thanks,
Amelia.
•
•
Kaletra and Viramune (not ‘Veramune’)
are the names of two HIV drugs currently
available, and which you may be taking.
TMC 114 (not ‘144’) is the name of
a new HIV drug that’s just become
available. From now on you’re more
likely to hear it referred to as darunavir
or Prezista.
Truvada and Atripla are HIV drugs, but
they are combination pills, meaning that
two or three individual drugs are put into
one pill. Truvada is available and many
people take it; Atripla will be available in
the UK very soon.
Maraviroc is another new HIV drug.
As yet it is not available in clinics, but
should be by the end of this year.
Fusion inhibitors (not ‘Fuzeon’) are a
type of HIV drug. At the moment there’s
only one fusion inhibitor available and
this is called Fuzeon, so I understand
the confusion! Fuzeon is the only
current anti-HIV drug you have to take
as an injection, not in a pill.
About HIV
Anti-HIV drugs don’t cure HIV infection. At
the moment and for the foreseeable future,
once you have HIV, it stays with you. But they
can stop it taking over and damaging you.
HIV is a virus. Viruses, I always think, are as
much like little biological machines as they
are like living things. They’re only interested
in doing one thing, and that’s making new
copies of themselves: they multiply.
That is why they can make so many copies
of themselves that some can escape and
get into another person – on a sneeze if it’s
a flu virus, but only in blood or through sex
if it’s HIV.
Viruses get into your body and use you as
14
issue 5
treatment
their raw material. They get into your cells
– the individual component parts of your
body – and then make the cells do the
wrong job so that instead of making new
bone or muscle or liver tissue or whatever
they make more viruses instead. This is how
viruses damage you; they make parts of
your body do the wrong job.
In the case of HIV, its sneaky trick is that the
cells it uses as its raw material are the ones
that normally fight other infections. These
are called lymphocytes or CD4 cells and
are part of your immune system – the set of
defences your body has.
So HIV makes your immune system
weak and makes you vulnerable to other
infections. If that goes too far, it causes
AIDS.
Doctors can count the immune cells you
have and if you have too few in a measure of
blood then you should start HIV treatment.
The cells they count are called CD4 cells,
and if your CD4 count falls below a certain
figure – 350 some say, but certainly before
it gets to 200 – then you need to start
treatment. (Don’t worry if your CD4 count
was lower than that when you started
therapy, it should start to rise again if the
drugs are working).
Viral load and what the drugs do
The drugs work by interfering with the
machinery HIV uses to make new copies
of itself. It is as if you wanted to stop a
machine and threw a spanner in the works.
They jam it up.
However they do not get rid of HIV, and if the
drugs are removed it starts up again.
Doctors can see if the drugs are working by
measuring your viral load. This counts how
many copies of HIV you have in a measure
of blood. If you are not on treatment, you
can have lots of HIV floating around; 10,000
to 100,000 copies is typical. If the drugs
are working, then they should drive the
African Eye Voice
number of HIV copies way down to below
50 or so. You may hear this called being
undetectable. This does NOT mean there
is no HIV in your body – it just means that
the drugs have interfered so much in HIV’s
machinery that it’s able to make very, very
few copies of itself – not enough to detect
– and so will damage your immune system
much less or not at all.
Drug classes
HIV drugs fall into different classes that stop
HIV working in different ways. Some give it
the wrong ‘raw materials’. These are called
nucleoside or nucleotide drugs, and the
two drugs in Trudvada, tenofovir and FTC,
are examples. You may hear them called
NRTIs which stands for Nucleoside Reverse
Transcriptase Inhibitors – explaining why
would take too long!
Other drugs are called non-nucleosides or
NNRTIs. Viramune (also called nevirapine)
is one of these. It stops the virus using the
raw materials from the cell.
Then there are protease inhibitors. Kaletra
and the new one, TMC114 or darunavir,
are examples. These stop HIV at a later
stage when it is trying to assemble all the
component bits together to make new
viruses.
Finally, some of the newer drugs stop HIV
getting into the cell in the first place. These
are called entry inhibitors, and maraviroc
and Fuzeon are both examples of this.
Fuzeon interferes with one step of this
called fusion; maraviroc with an earlier step
called attachment.
usually find a combination that still works
– but each time you become resistant it
limits your choices more, so you don’t want
it to happen.
Taking your drugs regularly is called
adherence. If you are having difficulties
with your adherence, tell your doctor, they
will not be angry. They may be able to give
you tips that help you remember, or if the
medication doesn’t fit into your lifestyle
they may be able to find one that suits you
better.
The drugs themselves can make you feel ill
too. This is called side effects. Again, you do
not have to suffer these in silence. Some of
the most common are diarrhoea or feeling
sick, feeling tired, headaches and dizziness,
pain or numbness in the feet or hands, dry
skin, and so on. You may get one or more of
these - or you may do just fine. They often
get better after the first month on therapy
but if your drugs are making you feel really
ill – or you think they might be – tell your
doctor. Your doctor will also be doing blood
tests to make sure the drugs are not having
bad effects, and may suggest a change in
therapy if they are, or may suggest another
pill that helps with the side effect.
Drug names
These are very confusing, because drugs
can have up to three or even four names.
TMC 114 is an example. TMC 114 was the
scientific name researchers gave to it when
they were still doing experiments to see if it
worked. Its generic name is darunavir. This
is a name given to it by the World Health
Organisation that will from now on apply
to this drug, no matter who makes it. Then
there is its brand name, which is Prezista
(brand names have a capital letter). This is
the name Tibotec/Johnson and Johnson,
the company that discovered and currently
makes it, owns. Only that company will use
that name. Finally, if some drugs get put
into a single pill then the pill is given a new
brand name – as is the case with Truvada.
Confusing, isn’t it?
So you will hear the same drugs called
different things. Here’s another example:
Scientific name
Generic name
Brand name
PMPA (now rarely used)
tenofovir
Viread
Also put into the combination pills called
Truvada and Atripla.
The lesson is: always check with your
doctor! He or she will know which drugs
you’re taking if you’re not sure. It’s worth
writing them down somewhere in case you
ever need to explain them to another doctor.
The treatment group i-Base (see www.ibase.org.uk) do a ‘treatment passport’ you
can record this stuff in and well as things
like your test results.
Resistance and adherence
You don’t really need to worry about exactly
how they work. The advantage of giving you
several drugs – usually three, sometimes
packaged into one or two pills – is that if you
just use one drug, HIV can make changes in
its machinery so that it can work even if the
drug is there. When this happens, it’s called
resistance.
Taking three drugs together, however,
makes this much less likely – as long as you
keep taking them. The worst thing to do is to
take SOME of your drugs but not all of them,
or take them sometimes but not all the time
– that’s how resistance happens.
These days, if you do become resistant (or
catch it – you can catch a drug-resistant
virus), we have enough drugs so that we can
African Eye Voice
treatment
issue 5
15
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Post Exposure Prophylaxis1
By Elias Phiri & African Eye Voice Reporter
Q
What is PEP?
Post: after;
Exposure: a situation where HIV has
a chance to get into someone’s blood
stream;
Prophylaxis: a treatment to stop an
infection happening
Therefore, PEP is a treatment to stop a
person becoming infected with HIV after it’s
got into their body.
PEP treatment involves taking anti-HIV
drugs for four weeks. If you think you may
have come into contact with HIV, for example by having unprotected sex, if a condom
breaks. However, it is not guaranteed to
work.
Q
Is PEP therefore a cure for
HIV?
There’s no cure for HIV. PEP can only stop
an HIV infection if taken very early on, after
HIV has entered the body, before the infection takes hold within the first 72 hours (3
days). Once HIV infection takes hold and
the infection becomes permanent then PEP
(anti-HIV drugs) can’t get rid of HIV from the
body. This is because the virus is now in
parts of the body that the drugs can’t reach.
So once HIV permanently infects someone,
the drugs can usually control the HIV in their
body but can never get rid of it completely.
So, PEP is a ‘morning after pill’? Absolutely
NOT. PEP is a course of anti-HIV medication
that needs to be taken daily over a course of
a month (28 days).
Q
What are the chances
someone will get PEP?
The BASHH guidelines provide guidance on
the use of PEP following sexual exposure to
HIV for non-occupational use. The recommendations assume that, the person has
presented within 72 hours of exposure
after either unprotected sexual intercourse
African Eye Voice
or where condom failure has occurred.
The BASHH guidelines have been given to
Sexual Health Clinics and hospitals that
help doctors decide if PEP should be given.
A doctor will need to ask questions about
what kind of sex happened, when and who
with, see www.bashh.org.uk, for further
information
Q
Where does someone get
PEP from?
These places might give people PEP:
• Sexual health clinics (GUM)
• Hospitals (usually A&E or ‘Accident &
Emergency’ departments)
• If you already have HIV try your HIV
clinic if the PEP is for someone you’ve
had sex with.
Not all these places in every part of the
country will have PEP or be able to give it.
Q
How much does PEP cost?
For people who need PEP, there is no cost,
as long as you are eligible for NHS healthcare. The pharmacy at the NHS hospital or
NHS clinic will provide the drugs for free.
Private clinics or private hospitals charge
for PEP which can be expensive.
Q
Will someone need to have
an HIV test?
Yes. Before someone is given PEP they
must have a confidential HIV test to check
they don’t already have HIV. They must also
agree to be tested after taking PEP to see if
it’s worked.
Q
What if someone can’t get to
a place that has PEP within
72 hours?
Once 72 hours are over PEP won’t usually
be offered. So if it’s not possible to get
to a Sexual Health Clinic that’s open it
may be worth trying a hospital Accident &
treatment
Emergency department because they never
close (although there’s no guarantee they’ll
give PEP).
Q
Now there’s PEP does it
matter so much if people
don’t use condoms?
Here’s why PEP doesn’t change the need
for condoms:
• Using a condom is more likely to stop
HIV being passed on than PEP is.
• Condoms don’t make you ill with nasty
side effects.
• You need a condom for as long as the
sex lasts -but PEP lasts for 4 weeks.
• Condoms are everywhere. PEP can be
hard to get sometimes.
• You control getting hold of condoms but
doctors decide if you should get PEP
and they may say no.
Q
Things to remember about
PEP
• PEP might stop a person getting
infected with HIV.
• It must be started as soon as possible
after unsafe sex or a condom not
working - and definitely within 72 hours
(3 days).
• It means taking anti-HIV drugs for 4
weeks.
• Side effects are common and can be
nasty.
• It’s not guaranteed to work.
• Not everyone wanting PEP will get it
- doctors decide who gets it using the
information given to them.
• PEP is not available at all clinics or
hospitals.
Footnotes
1
Most of the information in this
Q&A article on PEP are based on
the information from the following
websites; www.chapsonline.org.uk
www.tht.org.uk/pep and
www.bashh.org and a THT Sector
Summary Report on PEP.
issue 5
17
Positive
East
Better Futures For Positive People
Treatment Challenges For Africans In The Uk
Josephine Namusisi, African Services Manager, Positive East
Towards the end of last year, I put my
foot in it with a friend of mine. What did I
do? I asked her to think about taking HIV
treatment. She was offended that I had
asked her even though I knew her opinion
and feelings about HIV medication. She
said she would rather die, quite frankly,
than poison her body with this treatment.
This is not something I did lightly. I new her
sentiments but I felt quite strongly about
her and was genuinely concerned about her
health. I decided that even though it might
have a negative impact on our friendship, I
was prepared to risk that rather than keep
quiet. We have not spoken since then.
I have worked in the voluntary HIV sector for
over 13 years and during this time, I have
seen the changes mainly beneficial, that
HIV medication have had on people’s lives.
Whilst my ‘friend’ can be seen as quite
extreme, many African people have issues
with treatments and the worrying thing is
that they are not usually open about this
with healthcare professionals. We would
rather be grateful and do the best to cope
with our care, than admit that we are having
problems.
Those of us who were around in the early
90s will remember the alarming reaction
that drugs such as AZT caused among our
communities. A lot of people were convinced that these drugs were being used to
kill off Africans. If that didn’t work, it was
the morphine pump! It was a challenging
time for both the African community and the
Healthcare professionals who were involved
in our care. It was early days in terms of HIV
treatment and managing the side effects
which did include death at times was very
difficult. After the incident with my friend,
it appears there still those among us who,
unfortunately have not moved on alongside
advances in treatment.
My hope is that most people have, as we
see evidence of the benefits everyday in
our work. The point I would like to make is
that we need to be aware that many African
18
issue 5
people will say ‘ok’ when things are far from
okay. I suppose compared to some of the
challenges they face such as immigration,
family separation, poverty & destitution,
poor housing etc., a few problems with
adherence fade into the ‘ok’ category but
when you are looking at adherence, it is
very important to support people with those
things that they might consider minor but
which have an impact on the success of
their treatments.
It is difficult because of the limited time that
doctors have for consultation but I think
within the clinic setting, there should be
someone who can make time to check with
people in a more relaxed manner and on a
regular basis. Adherence support should
be part and parcel of clinic services and
can be achieved in a number of ways. I
know from experience that even HIV Clinical
Nurse Specialists are overwhelmed with
patients and may not always have the time
to do this. Partnerships with community
based organizations can be very successful
but the obvious challenge here is funding.
Whenever possible this service should be
provided in a culturally appropriate way.
Pharmaceutical companies could start
engaging with the NHS and create partnerships to support this work.
some Hospitals. If hospital staff suspect
that a patient might have immigration
issues, they will ask the Overseas Patient
Adviser to come and speak to them and we
can all guess what this means. Recently,
one of our clients discharged themselves
after being seen by an Overseas Patient
Adviser. For many African patients, its
facing the Home Office in your hospital bed!
Also, people who are not entitled to HIV
treatment are more likely to live in destitution. If they can’t afford food and a place to
live, how on earth can they afford to pay for
their treatment?
For some, there is a constant fear of deportation. It may interfere with adherence. For
others, there is no point in starting if you
are faced with a future back home where
access is very limited or even theoretical.
This is also a real barrier to HIV testing.
In addition, this service should be proactive
as I pointed out earlier, Africans will not
easily volunteer to raise concerns around
treatment. Before people start HIV treatment, they should have information about
what they are embarking on and where
to go when they have problems.
This is when treatment adherence work should
start.
However for many
Africans, there is a
very big issue about
access and entitlement to HIV treatment. Nowadays,
you have Overseas
Patient Advisers in
feature
African Eye Voice
Some of the other issues include faith and
healing. Religion has a profound impact on
many Africans be it Christians, Moslems
or any other religions. The majority of
Religious leaders however talk about HIV
as a moral issue, fuelling stigma and blame
against those affected. They preach cleansing, physical healing, etc. In some cases,
this has resulted in significant risk to the
health of those living with HIV. Religious
leaders need to find a way to address stigma
because they can play a very important part
in supporting people who find strength and
meaning through their faith.
There are also some concerns about
whether or not current treatments are
appropriate for the more aggressive HIV
sub-type common among some Africans.
Many people still experience poor health
even when they adhere to treatments and
feel that they are not benefiting from them.
It is possible that this is a result of late
diagnosis, but this is not always the case.
Whatever the reason, people are discouraged from taking drugs that seem to make
them feel worse than when they don’t take
them.
African Eye Voice
The issues may be complex but this is no
time to despair. It would be nice to start
with a change in Government policy, but
we all know that this is unlikely in the near
future. Doctors need to be allowed to look
after their patients on the basis of need
rather than entitlement. After all, when
you go to your GP to get a prescription, it
should not depend on whether you can pay
for it or not. If we know that Doctors have
got one thing on their mind when we go for
treatment, and that’s to help us get better
whatever our circumstances, then may be
we will feel more confident about confiding
in them when things are not ‘ok’.
women involved in campaigning to make
it a reality. Let us be inspired to highlight
our plight and I know one day, someone will
listen.
As for Africans, I urge you not to suffer in
silence. At Positive East, we gather information about issues that can be presented to
lobbyists as people’s life experiences and
how all these government policies impact
on our lives. There are other voluntary organizations that do the same, so please tell
us about your challenges and we will make
sure policy makers know about it. This year,
we commemorate 200 years since the abolition of the slave trade and what a daunting
task it would have been for the men and
feature
issue 5
19
ARV Treatment And Poverty
Jacqueline Uwera
Client Service Group & HIV/AIDS Country Champion
Standard Chartered Bank
If there is a country in Africa that
celebrates its success story on the
prevention and spread of HIV/AIDS is
Uganda!! One would definitely imagine
that this pandemic is non existent in the
country anymore. Let me introduce you
to a group of women and children that
remind me each day that this disease is
still alive and killing. We still have a big
role to play if we are to truly celebrate our
successes.
Kawempe
Positive
Women’s
Union
(KAPOWU) was established in May 2004
to respond to the needs of HIV positive and
negative child-headed families, HIV positive
and negative children and orphans.
It currently has a membership of over 350
widows, 250 orphans and 10 child headed
families. They meet every Thursday afternoon at Kawempe (Kampala City Council)
Health Centre to comfort each other, share
experiences so as to revive their momentum, spirits and will to live.
One Thursday I was privileged to attend one
of their meetings!! These are remarkable
women!! As I and a few colleagues, from
Standard Chartered Bank Uganda Limited,
get closer to their meeting shade, we are
welcomed by excitement, ululations and
applause.
The meeting is characterized by prayers
and death announcements of the fellow
members like “this week we lost some
members because of lack of food much as
they had just started their ARV treatment”
For a moment this seems unbelievable
given that someone seems to have gotten
their first ray of hope through ARV treatment
only to die due to lack of food. These are
people that are living way below the bear
minimum of $1 a day.
drugs. However, by the end of 2005 the
number had risen to between 71,000 and
79,000, representing half of those in need.
Since then the program has continued to
expand, though its effectiveness has been
threatened by drug shortages.
For the lucky few that have had the opportunity to get this treatment, more often, have
no money to afford one meal day. When they
do get food, it is not a balanced nutritional
meal. This has greatly compromised the
effect of the ARV Treatment. The KAPOWU
women survive on food handouts.
When ARVs were first discovered, we all
celebrated this discovery but for many of
the people in Africa and Uganda, this is still
a far fetched dream. Only very recently, in
June 2004, has Uganda begun to offer free
ARV medication to people living with HIV.
The initial consignment was funded by the
World Bank, with future drugs to be paid for
by a Global Fund grant of US$70 million.
Most of the women and men am trying to
describe to the world, cannot afford decent
accommodation. The accommodation
within their means is in the worst of slums.
The surrounding environment is breeding
ground for mosquitoes, dysentery and lots
of waterborne diseases. I am always left
short of words on how best to describe the
appalling environment my friends live in.
Further funds have come from America’s
PEPFAR initiative. Uganda’s target was
to have 60,000 on treatment by the end
of 2004. According to UNAIDS/WHO estimates, this target was missed, and between
40,000 and 50,000 people were receiving
My friends from KAPOWU, lack the best
medicine of all and that is love. Their families abandoned them long. Every time I ask
the women where their families are… they
are quick to answer…bakoowa!! (They’ve
had enough of us). Love has got a healing
power but to these my friends, it’s non existent. Most of these people have been left by
their relatives for dead.
I am only left to wonder, if the combination
of ARV treatment and poverty is here to help
sustain the lives of these poor people or to
cut the long story short for them. Unless we
do something to help most of these vulnerable people, the impact of ARV treatment
will not help sustain their lives given the
level of poverty they are living.
Like Maya Angelou simply put it… “I’ve
learned that people will forget what you
said, what you did but people will never
forget how you made them feel.” These
people still need to feel that they are apart
of the communities they live in.
A section of the women at their Thursday meeting
20
issue 5
treatment
African Eye Voice
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Nutrition:
A Positive Approach
Some commonly asked questions
Q
Maureen Sanders, Specialist HIV Dietitian, Kingston Hospital GUM Clinic
Should I be following a special
diet?
No, but it is important to have a balanced
diet including regular amounts from each
of the 5 food groups (see Fig 1). Certain
Vitamins and Minerals can help boost the
immune system and a diet low in these may
affect your T cell count. It may also be wise
to think about the fat content of your diet,
especially if you are taking anti-HIV medication; a side effect of some of these can be
raised fat levels in the blood (associated
with an increased risk of heart disease).
Aim to substitute saturated fats (found in
fatty meat, full fat dairy products, fats hard
at room temperature like butter, palm oil
and coconut cream) with unsaturated types
(lean meats, pure oils like corn, sunflower
and olive). This, along with eating more
fruits and vegetables (at least 5 servings
a day) and oily fish (e.g. Tuna, Mackerel,
Sardines, Tilapia, Salmon) offers more
heart protection.
Q
Do I need a multivitamin and
mineral supplement?
Depending on the quality of your diet or
whether or not you are taking anti-HIV
medication, some people may benefit from
taking a standard dose multivitamin and
mineral supplement (large doses can be
harmful). Discuss this with your Dietitian,
Pharmacist or Doctor.
Q
What about Herbal
Supplements?
If you are using/considering using Herbal
remedies always discuss this with your
Doctor, Pharmacist or Dietitian as many
can stop HIV medication from working
properly. Garlic capsules, St.John’s Wort,
African Potato and Sunderlandia are some
examples that can interfere with the metabolism of some Protease Inhibitors and non
Nucleoside Analogues. Aloe vera, Borage
22
issue 5
oil, Liquorice, Milk Thistle, DHEA, Gingko
and Valerian are others which may pose a
theoretical risk.
Q
If I am overweight should I be
trying to lose weight?
For some people weight loss (even if they
were overweight to start with) can be stigmatising. Although it is known that carrying
too much body weight (fat) can increase the
risk of Heart Disease, Diabetes and some
Cancers, fear of being labelled as having HIV
can make it harder for people to (intentionally) lose weight. It may be helpful to get your
body composition measured; this can help
focus on body fat rather than weight per se.
Some Dietitians routinely do this in Clinics
and may recommend prevention of further
weight gain/a small, gradual loss by way of
a low fat diet with regular exercise. There is
certainly no benefit to gaining weight if you
were already overweight. High protein/high
energy drinks are best reserved for those
people needing to gain weight/ who have
a poor appetite as oppose to being used
as a health giving supplement/tonic which
they are sometimes mistakenly used for (by
people whose diet and weight are otherwise
normal).
If you experience unintentional weight loss,
this is a different matter. There are many
reasons why this can happen. Your Dietitian
can advise you as to how to regain weight
lost.
Q
and the process repeated each day.
Q
What about bottled water?
Unfortunately it is not possible to guarantee
that bought mineral and spa waters are free
from waterborne infections and so it is wise
to boil them in the same way as tap water.
Q
Couldn’t I use a water filter?
So long as it removes particles greater than
1 micron in size, which basically means that
jug filters, would be unsuitable. It is possible
to have a filter fitted to your water supply but
this can be costly and it would need to be
changed regularly to avoid the harboring of
potentially harmful bacteria.
Q
Is it safe to drink Alcohol?
Always check this with your Doctor.
Otherwise there is no evidence that moderate alcohol consumption by people with HIV
is harmful (one to two units a day) and this
amount can be cardio-protective. One unit
represents half a pint of normal strength
beer or lager (strong beers can have at
least double the units), a standard glass of
wine, a single measure of spirits or a small
glass of sherry or port. However heavy drinking can impair the immune system as well
as being potentially damaging to your Liver.
The Government recommends that men
drink no more than 3 to 4 units a day and
women a maximum of 2 to 3.
Is it safe to drink tap water?
If your CD4 is less than 200,although rare,
you may be more at risk of picking up waterborne infections such as Cryptosporidiosis.
Boiling water, letting it cool and then refrigerating it in a bottle/covered jug can help
minimise this. The water can then be used
for drinking/ preparing foods/cleaning
teeth/making ice cubes. Any water not used
should then be discarded after 24 hours
treatment
These are just some of the questions I get
asked. There are many ways that nutrition
can play a part in helping improve your
health or controlling symptoms. Speak to
your Dietitian. He/she can give you more
information and tailor your diet to suit your
needs.
African Eye Voice
Fig 1. The Five
Food Groups
Starchy Foods
e.g. bread, rice, pasta, cereals, potatoes, yam, cassava, green banana, millet, maize meal
should form the basis of your diet and provide carbohydrates for energy as well as minerals,
vitamins and fibre. Try to eat something from this group at every meal.
Fruit and Vegetables
provide vitamins, minerals and fibre and can protect against heart
Disease and certain cancers. Aim to have at least 5 servings from this group a day.
Meat, Poultry, fish, eggs, beans, nuts
provide protein, minerals, and vitamins.2 to 3 portions a day are recommended
Dairy Products
such as milk, cheese and yoghurt contain protein, vitamins and minerals especially calcium.3
portions should be eaten a day. If you cannot tolerate milk, fortified Soya milks/yoghurts,
dried figs, apricots and nuts are all good sources of calcium
Fatty, sugary foods
e.g. cooking oils, butter, margarine, fatty meats, cakes, biscuits, pastries, sweets, crisps,
savoury snacks provide energy. Fats contain essential fatty acids, fat-soluble vitamins (A, D,
E and K). Aim to have smaller amounts from this group as excess fat is associated with weight
gain and increased risk of developing heart disease and some cancers
African Eye Voice
treatment
issue 5
23
The African Eye Trust
Suite107, Maddison House, 226 High Street, London, England CR9 1DF
Email: [email protected] | Website: www.africaneyetrust.org.uk
Registered Number: 06124839
Personal Voices 2007
On Treatment Experience
Having not adhered to my treatment, I suffered terrible side effect including lipodostrophy. But with the support of the
community nurse and my doctor, I now take my medication on time and in the right doses and I look and feel very well. I
recommend that all people taking ARV adhere to their treatment.
Jeanette Murungi
Coordinator Hackney Womens Project
Living with HIV
Living with HIV is difficult, but life is difficult anyway! I have found that constantly focussing on the HIV aspect of my life can
only make it harder. Learning to accept my health status; concentrating and focussing on the areas I can control, change,
and improve, like my character, relationships and life purpose has helped me to be a happier, more balanced and healthier
individual.
Thandi Haruperi
Director, RestorEgo Consultancy
On HIV Treatment Advocacy
There is need for more African Communities to train as HIV Treatment Information Advocates. In our communities a lot of
people still need clear HIV treatment information. Together, you and I can make a difference.
Elijah Amooti
Treatment Advocate
HIV Prevention
It is very important for all of us to regard HIV prevention as part of our personal health & safety toolkit. To look after our bodies
in the same way that we breathe in fresh air to live. We all, men & women, need to be empowered and skilled up to make
informed decisions about our sexual health. We need up-to-date accurate information and access to culturally appropriate
high quality services. Yong people need to be supported and skilled up so that they can make life enhancing choices.
Walter Gillgower
NAHIP Programme Manager
On Treatment
There is a need to increase HIV treatment information campaigns among African Communities so that people can adhere
to their treatments. A lot of people diagnosed are Africans and most of them start treatment as soon as they are diagnosed
because they present late. This will save the NHS money in the longterm.
Badru Male
Treatment Advocate
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African Eye Voice
feature
issue 5
25
An African woman
living with HIV
Claris Abiero, person living with HIV
I don’t know what I thought about HIV. It
sounded so scary, not to be mentioned
during the day, and definitely not at night.
The prevalent mode of transmission was
so harsh to internalize or even empathize
with anyone or anything in the same light
as HIV. In November, 1998 I had the
doctor read the results of my blood tests
after what I thought was a routine check
as a recovering addict.
When was the right time?
He said my liver and kidneys were okay,
and that I had HIV. Just like that! I had not
gone to see him for HIV screening. It was a
bad dream. I weighed 8Okgs and all I had
was a small boil that was causing fever. My
first question was, how much time, if any I
had left. I recall him mumbling something
to do with falling pregnant, immune suppressants, unprotected sex, eating well
and avoiding stressors. I had full power
and control over the first four pillars of how
much time I had left; the last was one was
not absolute.
Hopelessness
There was no one to disclose my HIV status
to. My secret was safe with me. My family
was still in denial, two years after my sister
succumbed to AIDS. I was not going to
cause them more pain. Rejection was the
furthest thing on my mind. In 2001, I didn’t
have to disclose. I was normalizing HIV. A
terrible cough was now blowing up my cover.
Two weeks into the cough, sores in my
mouth, gums oozing purse, diarrhoea and
serious weight loss all stood tall in my public
domain. My family “discovered” that I had
to take some very important drugs because
I had AIDS! I was going to be on the medications for the rest of my life.
Was I living?
Rumour had it that Anti retroviral drugs were
available, but only for the exceedingly rich
who ended up dying anyway, because there
was no cure!!! This was as late as 2001. I
had no desire to take my family through
another economic slaughter only to end up
dead. Hidden costs were also rumoured to
26
issue 5
escalate the actual cost of HIV treatment,
such as costly tests whose names sounded
scary. My fear was what my family would
go through having to nurse another “sick”
member. I even knew what my pastor’s
sermon was going to be. I had seen prophets of doom in village, the kind that say, “I
said so”.
Stigma
My brother had made a minor visit to the
market one morning; he rushed back to tell
me to remain in bed!!! He was dull, miserable and distressed. I told him I was okay,
and that I would be going to the market
later on in the day. He asked what I wanted
to collect from the market, and if he could
get it for me. I reminded him not to blame
everything on my condition. On insisting,
my brother sat down, calm followed by a
torturous moment of clearly choosing his
words. He said, “Your name is on a list that
has been posted in the market, this list is
warning residents to be aware of HIV carriers among them.”
Torment
My sons were 17 and 6 years old, I had not
talked about HIV with them. Just how was
I going to “console” them? My heart went
out to my boys. I couldn’t help thinking of
what treatment they will be facing from their
friends at school, their teachers, and other
pupils. I turned things over in my head more
than I had done 5 years before when I was
suddenly told that I had HIV.
what he carried was a “moving coffin”. This
time, I didn’t have to look surprised; I never
boarded a boda boda again. I opted to walk
the nine kilometres to the main road to take
a public vehicle to hospital.
No fear
I wanted answers. I wanted the man who
had published those names arrested! I
wanted answers. None was forthcoming.
I talked, for the first time since being diagnosed HIV positive. I told anyone who
cared to listen how unjust life had dealt me
a blow!
An African woman living with HIV
Many people listened to my dilemma, among
them was a Provincial Aids Coordinator who
helped me launched our first support group.
We had overwhelming support from collaborators, hospital staff, friends and relatives.
Three years later, I had launched 9 support
groups in provincial and district hospitals
and health centers. Currently, there are
17,500 patients (I call them members,
very health, active, productive individuals!)
enrolled in support groups. The program
has 43,000 patients. Plans are underway,
to establish 12 more support groups in
the next 12 months in already established
HAART clinics. The program currently has
43,000 patients and hopes to enroll some
50,000 patients in Western Kenya by the
end of the year. This time, there will be a
supportive environment for those patients,
and more so in an unforeseen eventualities.
Call it a network!
Name calling.
The village has bicycles as a convenient
mode of transport called Boda Boda; on
one occasion I boarded one on my way to
the hospital for my regular check up and
drug refill. A fast passing cyclist reminded
his colleague to look out for the “slow
puncture”, he was not whispering, I offered
to take another bicycle just I incase his
slow puncture needed repairs! He didn’t
respond. He cycled on. It occurred to me
that I was the slow puncture! My name was
on “the list”. Worse was yet to come. Some
days later, another cyclist told his friend
feature
African Eye Voice
The Isolated Crime Of HIV/
AIDS Non-disclosure
Dr. Lutaaya James
No sexually transmitted infection (STI)
has dominated public debate and media
coverage in the late 20th Century and
early 21st Century more than HIV/ AIDS.
The absurdity about it all, however, is that
it is perceived with prejudice, negativity,
accusations and blame apportionment:
often increasing the stigma and
discrimination that has faced people with
HIV.
As if the trauma of living with a terminal and
most stigmatised, mythical and feared STI
is not enough, HIV/AIDS transmission (deliberate or not) is now being criminalised.
The UK has been bombarded with a number
of landmark cases and prosecutions for
passing on HIV. Sarah Jane Porter who is
the most recent of the eight convictions
so far in the UK attracted headlines such
as “Aids Avenger”. Most of these trials
have been met with media coverage about
revenge, evil, promiscuity, irresponsible
sexual behaviour and deliberate infection.
Ironically, despite all the outrage and
Puritanism that beseeches these trials,
there has not been a conviction of deliberate transmission. The accused are being
convicted of reckless grievous bodily harm.
Now one of the most prevalent problems
for people with HIV: difficulty disclosing HIV
status in the bedroom has been criminalised.
Amazingly, there is a universal approval
of such prosecutions. Public perception is
that arresting and imprisoning people for
passing on HIV is a deterrent to others and
in the public’s interest. This is to a large
extent delusional and counter productive.
These prosecutions have instead fuelled
stigmatisation of people with HIV and
further enhanced reluctance among them
to discuss difficulties in managing safer
sex.
If the law wants to impose an obligation
on people with STIs to disclose their status
before unprotected sex (ironically this is
with HIV only); shouldn’t there be a counter
African Eye Voice
obligation on the other party to enquire
on the sexual health of his/ her sexual
partner? Isn’t the responsibility supposed
to be shared by both of them? We often
forget that people with HIV also contracted
it from some one else and if we are to continue getting excuses for increased infection
instead of dealing with the foundation of it,
we will not find durable solutions to it.
The major cause of the rise in the figures
of HIV infections is moral degeneration; not
“deliberate infection”. Charges of deliberate transmission are most unlikely to be
brought, as they require a heavier burden
of proof for a conviction. This is mainly
because it is relatively unlikely that sex will
lead to HIV infection. It as such would be a
very ineffective method of passing on HIV if
some one was really intent on doing so. The
only likely possibility envisaged is one using
a syringe of HIV infected blood to infect
another.
In comparison reckless grievous bodily
harm is proved when a person with HIV has
sex with another, is or should have been
aware of the risk of transmission, does not
inform the later of his/ her status and as
a consequence passes on his/ her virus.
Bizarrely if there is no transmission, one
cannot be convicted.
Despite this clear distinction in the two
crimes, media coverage is always about
deliberate infection. The reality is that in
the eight convictions in the UK, since the
first case of Stephen Kelly in 2001, none
of the convictions has been for deliberate
infection. They have all been for reckless
grievous bodily harm yielding a maximum
punishment of five years imprisonment.
Has this, however, achieved any positive
aim? Does subjecting some one faced with a
terminal disease and weak immune system
to prison conditions change the status of
the accuser? Does the fact that the accuser
consented to sexual relations exonerate the
accused in any way? Does the accuser have
any apportionment of blame and if so what
feature
is their penal punishment if any?
Without having to stereotype, it is often
true that people who get HIV get it through
un protected sex, some one night stands,
some with other people than their partners,
the majority without taking a joint HIV test
together and a minority get it from their
partners with whom they have been loyal
to. These statistics show that most people
who get infected do not exercise enough
sexual precaution. Most often than not,
when we have unprotected sexual relations,
we assume a “volenti non fit injuria” or a
voluntary assumption of risk. We all know
when that happens, we have it at the back
of our minds, but like the forbidden fruit
that exposed our nakedness; our attraction
to the needs of our bodies seems to over
power us.
When it is time to apportion blame,
however, we forget the four fingers pointing
at us. Any excuse we can come up with suffices. Unfortunately for the person with HIV,
it is his/ her non-disclosure; as if he/she did
not in the majority get it the same way. What
we should do is stop assuming a moral high
ground and be compassionate to people
with HIV, we never know if we or some one
close to us will be next in line. We also need
to change our perception to sex. We can
acknowledge our desire for the opposite or
same sex, but with selflessness and reason.
Sex within marriage and having one sexual
partner should be encouraged. Like the
Nigerian saying goes, “the death that will
kill a man begins as an appetite”, we should
shun away from sexual addictions, try to be
faithful and pray for partners with similar
visions.
Dr. Lutaaya James
© Nov. 2006
issue 5
27
Rapid Testing at
the Royal Free Hospital
Salima Adatia, Health Promotion Officer, Royal Free Hospital
HIV is considered a chronic condition in
the UK, with appropriate management
patients are living long, healthy active
lives. There are many benefits of being
aware of your HIV status, however one
of them is that the earlier that you are
diagnosed the sooner you can be linked
into a HIV team and receive supportive
healthcare. The aim of this article is to
guide anyone who may be thinking about
getting tested through the process.
In January 2006, the Ian Charleson Day
Centre based within the Royal Free Hospital
introduced point of care testing also known
as Rapid HIV testing. The service offered is
free and confidential.
Prior to rapid testing, same day testing had
been offered at the Royal Free which meant
that people would come into the clinic in the
morning, receive pre and post test counselling, blood would be taken and results would
be available at 4.00p.m.on the same day.
The system of same day testing worked effectively, however, waiting an entire day for
results increased anxiety levels for testers
and was often seen as a deterrent to test.
The rationale behind the Rapid day testing
was to address and try and overcome these
issues. One of the benefits of Rapid testing
is that it also minimises disruption to the
lives of testers, as only one visit is needed.
The Rapid testing clinic is offered two mornings per week on a Tuesday and Thursday.
Appointments can be booked between 9.00
and 10.30 a.m. Patients attend the clinic
and receive pre test counselling, which
generally lasts for 10- 15 minutes. The
Department of Health issued guidelines for
pre test discussion the main components
include;
1) Ensuring the individual understands
the nature of HIV infection.
2) A discussion of risk activities the individual may have been involved in with
respect to HIV infection including the
date of the last risk activity.
3) Discussion of the main concerns associated with having the test and the
possible outcomes of the test.
4) Providing details of the test and how
the result will be provided.
5) Answering any questions.
6) Obtaining informed consent regarding
whether or to proceed with the test.
Pre test counselling is not only a chance for
the counsellors to find out about the patient,
it is also an opportunity for the patient to
28
issue 5
ask any questions surrounding HIV. As we
all know there are still so many myths that
surround the virus, pre-test counselling is a
chance to address some of these.
Once a patient has received pre test counselling and consent has been obtained, they
are then ready to have the test. Patients are
referred to the nurse and a little blood is
taken from the finger using a finger prick
sample. Patients then have to wait up to an
hour for their results, sometimes results are
given sooner.
Knowing your HIV status enables the patient
to make informed choices about the kind
of sex that they have with partners. For
example the patient and his/her partner
may decide that they want to stop using
condoms, it’s a good idea to have an HIV
test and discuss the implications of this
choice.
If the patient tests HIV positive, it gives them
the opportunity to work in partnership with
healthcare professionals. Patients should
have regular blood tests and if these show
that the immune system needs help, HIV
treatments can be started, which can significantly improve health and quality of life.
Not everyone who tests HIV positive needs
to start treatment, however having regular
blood tests mean that the team can keep
an eye on you.
The test used at the Royal Free is the Abbott
determine HIV- 1 and HIV-2 test which is
validated for all subtypes of HIV- 1 and HIV2. The patients sample is compared against
positive and negative HIV control samples.
Once the results are ready they are checked
by an independent checker to provide confirmation of the result. This is then recorded
and given to the counsellor who will then
call you back into the counselling room to
explain your result.
There are three possible outcomes of an
HIV test.
Negative - this mean that no HIV antibodies
have been detected. If there has been no
risk within the last three months then there
is no risk of HIV infection and therefore
the result of the test is accurate. However,
if there has been a risk within the three
month period it is recommended that the
patient return for a re-test at the end of
the three month period, also known as the
window period. The patient is also advised
against any risk taking behaviour during this
period and preventative ways of reducing or
minimising risk are discussed.
treatment
There is a small possibility that the result
may be invalid in which case the procedure
will be repeated.
A reactive result means that the sample
taken is positive for HIV antibodies. Your
results will be explained to you by the
counsellor. Space and time will be given
to absorb the news and ask any questions.
Another sample is taken to confirm what
we have found, this is also known as a
confirmatory sample. The results of the confirmatory sample are available by lunchtime
It is important to note that sometimes false
positives can occur, which is why a confirmatory sample is extremely important. Once
your result has been confirmed a member
of the psychology team will be introduced
to explore any initial feelings that may have
been evoked with a positive diagnosis.
Patients are linked into our team and will
be seen by a Doctor for an initial examination and to answer any initial questions.
A follow up appointment is given. This is
usually within two to three working days
after diagnosis. At the next appointment
the patient will receive their CD4 count and
Viral load, which indicate whether or not
treatment will commence. The doctor will
also discuss diagnosis and general health
and provide the patient with the opportunity
to ask any questions in a safe confidential
environment.
The Ian Charleson Day Centre’s aim is to
support the patient once they have been
diagnosed. The clinic offers a range of
services such as women’s health, antenatal, paediatric, co- infection (such as
HIV and Hep C) amongst numerous other
clinics. Increasingly we are seeing greater
diversity amongst those being diagnosed.
Fortunately at the Royal Free a number of
Doctors are multi- lingual, if there is a language that we aren’t able to offer in house,
translations services are also available.
Every year we are seeing an increase in
the number of newly diagnosed patients.
The starting point is testing, which is the
individual’s choice. From this time you need
not be alone as there is an enthusiastic,
compassionate, committed team ready to
help you manage you’re HIV.
Rapid HIV Testing Clinic is offered on
Tuesday and Thursday mornings at the
Ian Charleson Day Centre.
Appointments Line: 0207 431 0970
African Eye Voice
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An Encounter with a Monster
Tuberculosis (TB), as told by one person with HIV in Africa
Lucy is an African lady living in Africa who
until September 1998 had been a fairly
healthy person. Lucy started experiencing
bouts of fever which seemed not to improve
with self medication from the local drug
shop. As the episodes of high temperatures
escalated, Lucy decided to seek
professional attention at a nearby hospital.
At the hospital, Lucy was seen by the doctor
who tested her for malaria parasites of which
came back to be positive. She was therefore,
put on antimalarial treatment. On completion
of the dose, her health did not improve.
She sought treatment from another hospital;
the same treatment was given to her after
finding that the malaria parasites was still
present despite having completed a course of
antimalarial treatment. By the time the second
course was completed, Lucy’s health had
really deteriorated. Lucy had started having
a dry and persistent cough which was not
productive. Her family and friends were really
concerned about Lucy’s health and directed
her to another clinic run by an HIV organisation, which they claimed was very good.
By then Lucy was very weak, she had to be
aided and supported. At the clinic, the doctor
asked Lucy if she has ever been tested for HIV
or TB. Lucy explained to the doctor that as far
as she was aware she has never been tested
for HIV or TB. The doctor then explained to her
that it was important that she should consider
having these test and if she was willing, the Dr.
would refer her to receive all the professional
support she needs before and after the HIV
test. As Lucy was feeling very ill, at that point
all she wanted was to get better. She agreed
to be tested for both HIV and TB right away.
The Dr. then arranged for some blood tests,
a chest x-ray and requested for some urine
specimen and early morning sputum before
eating anything.
lost so much weight, from 55kgs to 39kgs, the
Dr. also put her on a special diet to help gain
some weight.
When the blood results returned it showed
that she had malaria, was anaemic and the
HIV test also came out positive. The remaining
tests done showed that she had pneumonia as
well as TB.
Lucy now sings her praises to the HIV organisation that referred her to the hospital and continues to give her support She attributes her
recovery and improvement in welfare to the
staff and the clients who were an inspiration
through her terrible time. She also wishes to
appeal to the caregivers especially to medical
staff to be patient and take time to find out
about any previous medical and social history,
treatments a patient might have had in the
past.
Later, she was referred to a local hospital
where she was admitted to receive treatment.
By that time, she had already made her Will
as she had no hope of recovery and to make
matters worse most of the people were saying
to her that the time had come for her to ‘leave
this world’. She requested her family to come
with her and spend the last moments with her
at the hospital where she was being referred
to.
Once in the hospital, she was put on T.B medication as well as HIV drugs and was advised to
stop smoking and taking alcohol. As she had
Lucy says that, this experience has taught her
how important it is for her to follow the instructions given by the Dr, in particular having to
take the medication as prescribed.
All that said and done, Lucy now weighs a
whopping 65kgs and she says that she feels
absolutely fine.
From this experience, Lucy says that she realised how easily one can die from a curable
disease like TB if not diagnosed and treated
properly.
“Gees!!! I can not believe I lived to tell the
story” concluded Lucy.
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Directory
Do You Need More Information about HIV Services
i-Base Treatment Information
Helpline
Tel: 0800 800 6013
Taifa Community Care Project
Tel: 020 7708 1781
THT West
Tel: 0117 955 1000
Body Positive North East
Tel: 0191 232 2855
TACT
Tel: 020 8695 8111
Cambridge Body Positive
Tel: 01223 508 805
PIN (Positive In Northamptonshire)
Tel: 01604 634 969
Restorego
Tel: 020 8657 0555
THT Cymru
Tel: 029 2066 6465
THT Oxfordshire
Tel: 01865 243389
UK Coalition of People Living with HIV
and AIDS
Tel: 020 7564 2180
AAF
Tel: 020 7738 7238
The Eddystone Trust
Tel : 01752 257077
ARCHRO
Tel: 020 7737 6019
Thames Valley Positive Support
Tel: 0118 950 3375
Mid-Sussex Body Positive
Tel Helpline: 01293 552 300
St Peters House Project
Helpline: 01737 763 000
Streetwise Youth
Tel: 020 7370 0406
Body Positive Cheshire & North
Wales
Tel: 01270 653 150
Shield South Yorkshire HIV Support
Group
Tel: 0114 278 7916
Vanguard Health Services
Tel: 020 76275170
Derbyshire Positive Support
Tel: 01332 204 020
Body & Soul
Tel: 020 7383 7678
The Brunswick Centre
Tel: 01422 341764
Group
Tel: 0114 278 7916
HAZ
Tel: 020 8214 1474
Brent & Harrow Community Health
Projects
Tel: 020 8459 9040
Doncaster Pathways
Tel: 01302 327 445
African Culture Promotions (ACP)
Tel: 020 8687 0339
Lighthouse West London
Tel: 020 7792 1200
Black Women’s Health and Family
Support
Tel: 020 8980 3503
National Long Term Survivors Group
Tel: 01449 780 211
NAM
Tel: 020 7840 0050
International Community of Women
Living With AIDS
Tel: 020 7704 0606
Jewish AIDS Trust
Tel: 020 8952 5253
Oasis North London
Tel: 020 7485 2466
OPAM
Tel: 020 7281 2254
UCRA
Tel: 020 8808 6221
Zacca
Tel: 020 8365 1665
CWAC
Tel: 020 7247 9115
Caress
Helpline: 020 8220 0110
Globe Centre
Tel: 020 7791 2855
Kingston, Richmond & Surrey African
Positive Outlook
Tel: 020 8546 1671
LEAN
Tel: 020 8519 9545
Positive Action
Tel: 020 8047 5529
Positive Action Project
Tel: 020 8534 5448
Positive Care Link
Tel: 020 7613 7700
MacFarlane Trust
Tel: 020 7233 0057
PPC
Tel: 020 7738 7358 or 020 7738 7333
Naz Foundation
Tel: 020 8741 1879
PHACE Scotland
Tel: 0141 332 3838,
PHACE Scotland
Tel: 01224 587 166
The Brunswick Centre
Tel: 01422 341764, Mon-Thurs, 9am4.30pm
Positive Action
Helpline: 0800 980 1990
Group
Tel: 0114 278 7916
THT West
Tel: 01225 444347
Positively Women
Helpline: 020 7713 0222
SLAWO
Tel: 020 8648 1808
Freshwinds
Tel: 0121 456 8100
SOLCA
Tel: 020 8664 8657
THT Midlands
Tel: 0121 694 6440
Worldwide House of Hope
Tel: 020 8296 0105
ABplus
Tel: 0121 622 6471
ACIA
Tel: 020 8687 2400
Body Positive Blackpool
Helpline: 01253 292 803 (24 hours)
Lighthouse South London
Tel: 020 7816 4720
Body Positive Dorset
Tel Office: 01202 297 386
Helpline: 01202 311 166, 24 hrs
Harbour Trust
Tel: 020 8854 1788
London Ecumenical AIDS Trust
Tel: 020 7793 0338.
Mainliners
Tel: 020 7582 5434
African Eye Voice
Open Door
Tel: 01273 605706
THT South
Tel: 01273 764200
Waverley Care Solas
Tel: 0131 661 0982
Body Positive Strathclyde
Helpline: 0141 248 8285
The River House
Tel: 020 8753 5190
Brighton Body Positive
Tel: 01273 693266
THT South
Tel: 01323 649927
Positive Action South West
Helpline: 0800 328 3508
Positively Healthy
Tel: 020 8977 4411
The HIV Support Centre
Tel Office: 028 9024 9268
N.I. AIDS Helpline: 0800 137 437
AHEAD
Tel: 020 8316 4868
Body Positive Tayside
Tel: 01382 461 555
Thames Valley Positive Support
Tel: 01628 603 400
The Ribbons Centre
Tel: 023 8022 5511
Groundswell
Tel: 023 8063 1651
The Crescent Support Group
Tel: 01727 842 532
Staffordshire Buddies
Tel: 01782 201 251
Dudley HIV & AIDS Support Group
Tel: 01384 444 300
Wear Body Positive
Tel: 0191 510 1805
AIDS Trust Cymru, The SWISH Centre
Tel: 01792 461 848,
THT Cymru,
Tel: 01792 477540
Body Positive
Helpline: 01482 327 060
Body Positive Somerset
Tel: 01373 836 121
Reach Out Highland
Tel: 01463 711 585
Helpline: 0800 328 3508
THT Yorkshire
Tel: 0113 236 4720
The Eddystone Trust
Tel Office: 01803 380692
LASS
Tel: 0116 255 9995
Helpline: 0800 328 3508
Positive Health Lincolnshire
Tel Office: 01522 513 999
Helpline: 0800 252 534, 24 hrs
Kernow Positive Support
Helpline: 01208 264866
Sahir House
Tel: 0151 707 0606
Mersey AIDSline:
Tel: 0151 709 9000
Bedfordshire Body Positive
Tel: 01582 485 448
Body Positive North West
Helpline: 0161 873 8103
The George House Trust
Tel: 0161 274 4499
Teeside Positive Action
Helpline: 01642 254 598
African HIV Policy Network
Tel 020 7017 8917
directory
Begin Learning and Living with HIV
Tel: 01924 211 117
THT Midlands
Tel: 01902 711818
The Worcester AIDS Foundation
Tel: 01905 611 602
North Yorkshire AIDS Action
Tel: 01904 640 024
National Aids Trust
Tel: 020 7814 6767
The Positive Place
Tel: 020 8694 9988
This infomation is available at
www.avert.org along with opening times
and further information
31
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view - The African Eye Trust

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