Mail & Guardian (Johannesburg) - June 17, 2003

In a green pillbox marked with each day of the week are the tablets that Nywagi takes in the morning and evening. "I was able to walk again soon after I started anti-retroviral treatment."

These little white tablets have become the subject of high political drama as the government and civil society tussles about whether a national treatment plan should be extended.

For Nywagi they mean he can live a normal life. When he began the ARV treatment in November 2001, Nywagi's body was racked by TB and cryptoccocal meningitis.

Speaking at the second anniversary of the Khayelitsha AVR programme run by M d cins sans Fronti res he says: "I am sharing my experience of sickness. I think it is important as a man living with HIV/Aids to be doing this work."

Even when a national ARV plan is finally passed, it is only the beginning of a huge challenge. The costs of the drugs and the government's political will to issue local drug companies licences to manufacture generic versions of anti-Aids drugs are still the big challenges.

The other tests will be to ensure that HIV-positive people stick to their drug treatments, education, infrastructure at primary health-care facilities, training nurses and doctors, and employing more staff to deal with the epidemic in the public sector. But it can be done.

Eighteen projects in the public health sector already administer ARV therapy and 980 people receive highly active anti-retroviral therapy (Haart) in the public sector, says Colwyn Poole, M d cins sans Fronti res' resource centre manager. He says 2 295 more people will be receiving the treatment by the end of this year.

Poole says these pilot sites in Gauteng (three), KwaZulu-Natal (five) and the Western Cape (10) could be used as models when the government scales up ARV treatment sites.

In Khayelitsha ARVs are provided in a poor primary health-care setting and at Chris Hani-Baragwanath hospital in Soweto high-tech clinical trials are being undertaken at the perinatal unit.

"The Khayelitsha anti-retroviral programme is not only a model of implementation of Aids drugs for South Africa, but a model for the world," says Eric Goemaera of M d cins sans Fronti res.

In April 2000 the group, with the Western Cape provincial government, set up three dedicated HIV/Aids clinics in different areas of Khayelitsha.

These clinics, alongside taxi ranks and grant offices, began providing ARV treatment in May 2001. Two years later the the World Health Organisation (WHO) has described the programme as one of the best examples of providing ARV in a poor environment.

The three clinics provide services to more than 1 800 HIV-positive people, about 600 of whom receive ARV treatment. After a year on treatment, 83% of candidates survived and 84% had undetectable viral loads, says David Coetzee of the University of Cape Town's department of public health.

Babalwa Thembani (20) confidently walks into the Michael Mapongwana clinic to collect her monthly supply of treatment without feeling embarrassed that she is HIV-positive. She contracted the virus from her uncle, who raped her at the age of 14. Thembani has faced death and many opportunistic diseases.

"My school starts at 8 o'clock and every day my teacher says: 'Babalwa have you taken your medication?' At night I remember to take it because there is a clock [at home]."

Thembani says she takes her tablets because the consent form she signed before going on the treatment explained that if she missed a few days the drugs would not be effective.

The stigma was a problem says Goemaere. "The nurses were negative against having HIV clinics, they kept saying in 'our culture people will not come to the clinic because they do not want to be identified as HIV-positive'," he says. "The best way to kill the stigma is the numbers, when you [are] amongst a large number stigma fades away."

Marta Darder of M d cins sans Fronti res says the requirement for disclosure is to create openness, as it is important for adherence. She says people who are taking the drugs every day need someone they can confide in.

"Initially when we first started [the programme] stigma was high, but when confidence is built in the community it creates openness."

Goemaere says people keep taking the drugs because there is enormous pressure placed on support groups and counsellors. "If you want to have good adherence you need good counsellors," he says.

According to the WHO guidelines the treatment should not be started at the first clinic visit. "It is important to have a period of education and preparation."

At M d cins sans Fronti res two strategies are used: they use a simple drug regime (only two pills twice a day, regardless of meals) that minimise the burden of pills, the dosages and the risks of side effects. The second is to ensure a good understanding of the treatment and a strong support system.

"I disclosed my status to my aunt after my mother died of Aids. My cousin became my treatment assistant. She would remind me to take my medication," says Thembani.

Side effects and the toxicity of the drugs have been used by the government as an excuse for not providing treatment.

Karen Cohen, a pathologist at the University of Cape Town, says all drugs have the potential to cause serious side effects, and prescribing any drug involves weighing up the risk of a serious side effect with the potential benefits of the drug to the patient.

"Advanced HIV-infection [Aids] without access to ARVs poses a far higher risk of serious illness and death to an HIV-infected person than antiretroviral medicines pose. Serious side effects of antiretrovirals can be picked up and dealt with, with careful monitoring of patients."

Side effects for the combination Thembani takes could include headaches, fatigue, upset stomachs, anaemia, nausea. Some drugs cause severe dizziness, insomnia, rash and disturbing dreams. A rare, but sometimes fatal, side effect is lactic acidosis where lactic acid builds up in the cells and blood stream.

The perinatal unit at Chris Hani-Baragwanath hospital has an elegant waiting room where approximately 50 HIV-positive patients wait for their turn to see the doctor or nurses.

"The question to ask is, if ARVs are rolled out on a massive scale, are there sufficient doctors? Clearly there is a shortage of doctors," says Doctor Neil Martinson, deputy director of the unit.

He says the model of using primary health-care nurses as providers in health-care clinics is the solution. They have trained two primary health-care nurses to specifically treat HIV/Aids patients and provide services after the patient has had the initial consultation with the doctor.

"We could have centres of excellence to link up with rural areas and provinces that have limited resources," says Martinson.

Médécins sans Frontières has begun to prepare for an ARV roll-out in the rural town of Lusikisiki in the Eastern Cape, to explore the specific challenges and expand to other rural areas elsewhere in Africa.

"We must recognise that the difficulties in a rural area are not insurmountable and there is definitely scope in these areas to provide ARV treatment," says Herman Reuter, head of the M d cins sans Fronti res mission in Lusikisiki.

He says another restraint is the lack of political commitment by government. "Nurses get confused because of the arguments on side effects and nutrition."

There is still doubt about the public health-care system's capacity to cope with the extra burden of HIV treatment. "I think our health services will be hard pressed to deliver new services rapidly whilst still maintaining and improving existing services," says a public health analyst."The doubters said it was impossible, too expensive, or impractical. Let them say that to our patients who are under ARV treatment and thriving in Khayelitsha. The challenge now is to repeat this and to use successful pilot programmes as a guide to scale up," says Tito August, a doctor working in Khayelitsha.

030617
MG030608

Copyright © 2003 - Daily Mail & Guardian. For information about the content or for permission to redistribute, publish or use for broadcast, contact the publisher.

AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Broadway Cares/Equity Fights AIDS, Elton John AIDS Foundation, the National Library of Medicine, Pacific Life Foundation and donations from users like you.

Always watch for outdated information. This article first appeared in 2003. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2003. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .