The Hannan Crusaid clinic at Guguletu, South
Africa, is a model of excellence: using mobile technology and a network of
HIV positive treatment counsellors
Words Robert Fieldhouse
Images Africa Search
Of
the 5.5 million people in the greater Cape Town municipality, around 3.5 million
live in its black townships, more or less invisible to the white paradise
of the ‘mother city’. Cape Town is an inspiring place, but it’s
sometimes hard to believe you’re in Africa; it can feel like San Francisco
and the most sophisticated parts of Europe rolled into one. That’s not
to say the townships are devoid of innovation or inspiration. Visiting the
first dedicated public HIV treatment clinic in South Africa, Hannan Crusaid,
was a real eye-opener.
From the outset I was struck by the air of anticipation generated by the newly
available therapies, though the hope is tempered by stigma and discrimination.
People would still rather die an untimely and painful death than walk into
an antiretroviral clinic. Dr Linda-Gail Bekker and her husband Dr Robin Wood
work at the University of Cape Town’s Desmond Tutu HIV Centre (DTHC),
which opened in 2003. Dr Wood has worked in Cape Town since the early 1980s
when he was based at the Somerset Hospital, providing care to a predominantly
white, affluent gay male patient population. He is a man described by his
wife as: “A cardiologist who really had a heart for HIV when nobody
else wanted to touch it.” Since the mid 90s the pair have been active
clinical trial investigators. “We realised the only way we were going
to get access to treatment was to take part in clinical drug trials,”
says Dr Bekker. They developed a cohort of about 400 people whose only hope
of being able to access treatment in those early days was through clinical
trials.
A
legacy for life
Around 450,000 people live in the Nyanga district of South Africa, with Guguletu
the central, most established part. It’s a long-established community
that went through the apartheid struggles. It remains politicised and stable.
Burgeoning around it are masses of communities living in shanty houses. The
HIV prevalence rate among adolescents is high. Dr Bekker’s dream is
to re-build a run-down youth centre and bring in the arts, drama, music and
dancing. “These kids need other things in their lives,” she says.
Guguletu is home to Hannan Crusaid, set up, as the name suggests, by Crusaid,
the UK-based HIV fundraising charity, with a legacy left by Katie Hannan.
DTHC provides services to the clinic and it started with just 150 patients
in 2002. The following year the government announced its antiretroviral treatment
programme rollout. Two years on, the centre now treats around 1,000 people
living with HIV.
Due to funding and staff shortages, the clinic is currently examining whether
nurse-based care is as good as doctor-based care. Clearly, researchers hope
to show no difference. Other research focuses on whether directly observed
therapy or intensive treatment adherence counselling produces better treatment
responses among people whose first therapy has failed. Drug accountability
is one of the big issues that Africa as a continent has to deal with. Over
50 per cent of the drugs in the depot never get to their intended destination.
This could be disastrous due to the need to maintain consistent supplies of
antiretrovirals to keep the virus suppressed. A barcoding system is now being
piloted at Hannan so that drugs can be tracked from the moment of arrival
to when they are collected by the patient. This can be linked to blood results
and people can receive their CD4 and viral load results by text messaging.
More
people on antiretrovirals
In April, around 29,000 people were receiving antiretroviral therapy. In recent
months there have been significantly more people beginning treatment than
ever before, but the South African government still failed to meet the World
Health Organisation’s target of getting 59,000 people on treatment by
1 April this year. Mostly people are obtaining treatment in areas where the
best healthcare facilities exist, such as Gauteng and the Western Cape. But
some provinces have really struggled as a result of less than decisive political
leadership. Fourteen facilities including DTHC feed patients into the Hannan
Crusaid centre. Current clinical policy is to accept people with an Aids diagnosis
or those with a CD4 below 200, but in the future people with symptoms of HIV
infection will also be accepted. There is about a five week wait for an appointment
for an assessment and it takes about a further four weeks until antiretrovirals
can be initiated.
The community health centre is a 24-7 chronic care centre. During construction,
the team had to operate from a Portakabin on-site.
Mobile
technology
The centre employs 25 treatment counsellors, all living with HIV, each looking
after 35 patients. They gained their medical knowledge from Dr Bekker and
many of them are on treatment themselves and wanted to get involved to help
others get to grips with it. The whole team has become the cornerstone of
the programme, the reason for its success. A mobile phone company has sponsored
the programme and each counsellor has a mobile linked to a database so messages
about people picking up pills or attending at clinic can be sent to the counsellors
directly. Counsellors work around HIV disclosure. “We have good data
to show that people who live secretly do much worse than those who have disclosed
to at least one other person, so we really try hard to get people to disclose.”
Starting
therapy
Patients start therapy with d4T and 3TC and a non-nucleoside reverse transcriptase
inhibitor (NNRTI) such as nevirapine or efavirenz. This is followed by treatment
with ddI and AZT with a ritonavir-boosted protease inhibitor (usually lopinavir-ritonavir).
This has become known as the Guguletu protocol. The recommended treatments
became a template for medication prescribed in the South African national
rollout. While there were about 15 registered drugs, it’s only really
possible to construct two different regimens because of limited stock or due
to the prohibitive cost of certain medications. “Like the rest of the
world, we are discovering that d4T is a disgusting drug,” says Dr Bekker,
“and we would like to use it as little as possible. But at the moment
it’s dirt cheap, relatively easy to use and available. We can switch
people from d4T to AZT but we are conscious that if we do we are already moving
them into a second line and we don’t have limitless options.”
Initial HIV therapy costs 300 South African Rand a month. This equates to
around £1 per day for triple combination therapy. Second-line therapy
is more expensive at around 700 Rand a month (£60 a month). Add to this
the monitoring costs such as viral load and CD4 testing, and there is no money
left for drug resistance testing on an individual basis.
Treatment
activism
Both Dr Bekker and Dr Wood spent time in New York and watched early treatment
activism. The activists and clinicians in South Africa have been partners
since the very beginning. Treatment activism grew up very quickly in South
Africa and Dr Bekker thinks they have found a balance between not shouting
too loud to get what they want, “though there has often been good reason
to keep shouting”. “It’s all very well to say to someone,
we will get you on antiretrovirals so you can get back to work, but if there
isn’t work, what do you expect them to do?” she continues. “Someone
who has been getting a disability grant because they had Aids and has been
feeding the whole family will have it removed from them because the doctor
says they are looking fine. If they lose the payment it can becomes a big
disincentive to take the treatment.” Drugs are no solution if you have
no food to eat or place to call home.
Mother-to-child care
Dr Bekker visited Crusaid in 2000 to raise funds for her mother-to-child HIV
prevention programme. Soon mother-to-child HIV transmission was under control
but treatment for adults remained elusive. In response to this, a family clinic
was established. “The first question we ask when someone comes into
the mother-to-child programme is, ‘who else in your household has HIV?’”
says Dr Bekker. “If there is anyone else we fast-track them and people
start therapy together.” The midwife obstetric unit delivers around
5,000 babies each year and 1,200 are born to positive women. “If their
CD4 count is less than 200 they will be referred to the Hannan Crusaid antiretroviral
unit. About 90 per cent of people offered HIV testing take it and if they
test positive they are offered drugs to prevent mother-to-child transmission.”
Dr Richard Kaplan, senior doctor at Hannan, says the advent of the antiretroviral
era has made his job more tolerable; he takes solace from the fact 90 per
cent of patients on treatment have an undetectable viral load and report extremely
high rates of adherence. “In six months they will be putting on weight,
they will look great. I’ve had to put most of the counsellors on a diet,”
he jokes.
A model for success
The team at Guguletu has made a CD-Rom to show others how to develop a clinic.
“The best advice I could give is to get into your community and find
out who your partners are,” says Dr Bekker. “You are going to
need food security and to develop partnerships with the non-governmental sector.
People say, ‘I feel great on my drugs but how do I take them without
food?’” “We have a public health approach to treatment whereas
in the UK you advocate individualised care. However, the rates of undetectability
here at Guguletu outstrip the First World and our adherence rates are above
95 per cent. When you’ve stared death in the eyes you work hard to avoid
it by taking all your tablets. Cynics say: ‘It’s all very well,
you are just one clinic that is a champion’. My answer to that is, let’s
get more champions.”
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