While the Treasury and Department of Health(DoH)number-crunch to determine whether government can afford anti-retroviral (ARV) treatment in public health, a number of small ARV programmes are already up and running.

Several others are in the pipeline, the most ambitious being the SA Medical Association pledge to raise R80-million to set up two ARV pilot projects in each province to treat 9 000 people. At present, about 700 South Africans who cannot afford medical aid are receiving ARV treatment through a number of research projects, according to a recent ARV conference organised by the Treatment Action Campaign (TAC).

Although modest, the projects – all located either in the Western Cape,KwaZulu-Natal and Gauteng – have already learnt some important lessons. The Western Cape is the most advanced, with seven ARV projects treating over 500 people. This is a clear indication that the support shown by the   province’s government has played an important role in creating an environment where ARV therapy can happen.

The Khayelitsha programme, started in May 2001 by Medicins sans Frontieres (MSF) and supported by the provincial administration, is the biggest and oldest public health ARV programme in the country.

One of the most striking things about the Khayelitsha project is that it is usually cheap generic ARV drugs imported from Brazil which cost R10 per patient per day.

It has been given permission to do so – in terms of what is called a Section 21 exemption – by the Medicines Control Council.

“We have over 300 patients on anti-retrovirals, and this has completely changed the attitude of health workers. They now see they can do something for people with AIDS,” says Dr Fareed Abdullah, Deputy Director General of special health projects in the provincial administration.

One of the trickiest things about ARV therapy is that a patient needs to have near-perfect adherence to treatment if the drugs are to work. This means that a patient needs to take the drugs every day at the same time 90% of the time.

“We have found that counselling is an essential part of treatment if we are to ensure that people adhere to their treatment,” Abdullah told the TAC conference.

“We feared that there would be low adherence, but people who have been close to death have really learnt how to take their medicine.”

Dr Eric Goemaere, who runs the Khayelitsha ARV programme, says people need to prove that they are reliable before they are admitted onto the programme. “The person has to have attended HIV clinics for the past three months and been on time for the last four appointments. They also have to have the clinical symptoms of AIDS and have a CD4 count of less than 200,” he said.

A board made up of community representatives makes the final selection, but of the 386 people who have applied only 30 have been refused access for various reasons including substance abuse.

Dr Lorna Jenkins from an ARV research project run at Chris Hani-Baragwanath Hospital in Gauteng, says her best advice is “don’t rush to start”.

“It is better to wait until your patients are well educated about the programme and you have thorough medical information about them,” said Jenkins.

“We found that psycho-social support has a profound effect on adherence. It is important to get a detailed report of the patient’s home circumstances.

Our patients also had to attend a support group which discussed issues such as side-effects, lifestyle changes. Attendance dwindled as people became more comfortable with their treatment.”

Family members could also be asked to corroborate patients’ information, said Jenkins. This proved important where a psychological problem, including alcohol abuse, was suspected. A project can fall apart if it doesn’t have proper administrative back-up, warns Abdullah. “We sometimes fall down on the administration such as ensuring a constant drug supply.”

In addition, seven of the nurses involved in the project have left, mostly to work in the UK, and have not been replaced. Identifying those in need of ARV treatment is not always easy, given that people often deny that they have HIV. In South Africa, tuberculosis and HIV often go hand in hand.

For example, in 2001 in KwaZulu-Natal 64.6% of the province’s 65 654 TB patients were also HIV positive, according to the University of Natal’s Professor Slim Abdool Karim. Nationally, 47.6% of TB patients were HIV positive.

The health department is putting a lot of energy into improving TB treatment, particularly using the Directly Observed Treatment Short-course (DOTS) method. With DOTS, a TB patient has to take their tablets in front of a DOTS supervisor every day. This supervisor can be any responsible member of their community.

In rural Haiti, which is poor and unresourced like many parts of South Africa, DOTS has been used as the basis for introducing ARVs. Karim is exploring a similar idea by piloting an integrated TB-HIV care project at the Prince Cyril Zulu TB clinic in Durban. It has only 20 patients at present but plans to expand to 400.

“There are about 4.7 million people living with HIV in the country,” said Karim. “How do we find those in need of treatment? One efficient way to people through existing TB treatment programmes. “The care infrastructure for TB already exists and there is a high co-infection rate of TB and HIV. In addition, experience from other countries shows us that co-infected patients have a high mortality rate,” he said.

But while TB programmes might be a good way to find the people who need AIDS treatment, Karim warns that running TB and ARV treatment concurrently will not be easy.

“The pill burden in the first two months is heavy for TB patients, who have to take four different medications. If you add ARVs, this means triple therapy, or three drugs. With the seven drugs, there is a higher chance of side effects and toxicity.”

In addition, TB treatment is usually five days a week for six months, whereas ARVs need to be taken every day for longer than six months.

Jenkins’s project has opted to exclude patients with active TB until they have completed their treatment. Her project also only enrolled women who were prepared to take contraceptives.

While these small projects have uncovered a number of important issues, as Karim says, “there is a policy vacuum and a leadership vacuum”.

Government needs to step in and guide the process if there is to be equal access to anti-retroviral treatment countrywide, rather than small research-driven projects set up here and there.