Ninety five patients died between June and December while on the waiting list for anti-retroviral (ARV) drugs in the Free State.

This was revealed last week at a conference aimed at getting health professionals to share experiences of the ARV rollout.

The conference, co-hosted by the Free State’€™s health department and the University of the Free State, was the first open forum to bring together healthworkers, researchers and government officials since government announced the ARV rollout in November 2003.

For most patients in the first few months, their need for treatment was urgent. They had known for some time that they were living with HIV and their immune systems were very weak.

‘€œWe have even had patients with a CD 4 count [measure of immunity] of zero,’€ said Dr Tebogo Seape.

Yet for two months late last year, the ARV roll-out was badly disrupted by a shortage of drugs. This was caused mainly by difficulties one of the drug manufacturer’€™s had in getting raw materials to make the drug, efavirenz.

At the same time, generic supplies had dried up after the World Health Organisation (WHO) de-listed four generic drugs between last August and December until their manufacturers could prove that they were bio-equivalents of their brand names.

The lack of drugs seriously dented the programme’€™s credibility and health workers’€™ morale.

The slow processing of crucial laboratory CD4 tests to determine whether patients were eligible for ARV drugs also hampered the roll-out. Only patients with CD4 counts under 200 are eligible for ARV treatment, yet some laboratories took about four weeks to process the CD4 tests.

Seape, who is based at Welkom’€™s Bongani Hospital, the only treatment site for Lejweleputswa district, said other barriers for patients included ‘€œa problem of accessibility’€.

‘€œPeople lack transport to get to the treatment site and there is only one site per district,’€ said Seape.

‘€œThere is also only one pharmacist dealing with ARVs for the whole district. The three clinics that assess whether patients need ARVs are being overwhelmed by people but most only have two nurses. Also the assessment clinics lack computers.’€

Not enough men and children are getting ARV treatment.

Nationally, only 35% of patients on ARVs are men, while in the Free State this figure is 33%. This is likely to be because ante-natal clinics were the first to introduce ARVs, and remain an important recruiting ground for ARV patients.

Children also seem to be falling through the cracks. Bongani Hospital’€™s Dr Ralph Nhiwatiwa reported that only 29 of his 374 patients were children, while other health workers said that they lacked the knowledge to treat children.

A study of eight hospitals countrywide showed that none of the staff had paediatric HIV training, according to the University of Pretoria’€™s Professor Eric Buch.

Buch’€™s researchers identified 43 children in the hospitals’€™ wards who showed three or more clinical signs of HIV, yet local doctors had only identified seven of these children.

Staff shortages and public ignorance were also identified as key problems.

Bongani Hospital, which was the first ARV treatment site in the province, has lost five of the seven doctors working in its ARV clinic in the past two months. Three relocated to rural hospitals in order to get a rural allowance.

In addition, health workers were concerned that most of the posts they had left in hospitals and clinics to work in specialised ARV clinics had not yet been filled. There was thus a danger that the ARV programme was being built at the expense of the rest of the healthcare system.

‘€œWe must avoid over-prioritising the ARV programme because it is not just about ARVs,’€ said researcher Nadipha Jacobs.

Meanwhile, a province-wide household survey showed that there was widespread ignorance about both AIDS and ARVs .

Only 45% of people in the Free State knew what caused AIDS and over half of residents had never even heard of antiretroviral drugs, according to Judith Matthis, a researcher from the CIETafrica, which conducted the survey.

Almost one third (31%) of people believed that condoms caused AIDS, while others said women spread AIDS by using contraception, menstruating and prostitution, added Matthis.

Of those who had heard of ARV drugs, 15% had incorrect information. Some believed the drugs should only be taken when a woman was pregnant or after she had been raped, while others believed that the drugs only worked if you took them before you became HIV infected.

Most people learnt about HIV from the media, but the majority said that they would prefer to hear about the disease from their health care workers and clinics

Pitso Noe, a community representative on the board of two Eastern Free State hospitals, said that he had found a ‘€œserious lack of information’€ among patients on antiretroviral drugs.

‘€œPeople wanted antiretroviral treatment for all, irrespective of CD4 count. There was a perception that this was discrimination,’€ said Noe, who said community organisations had to be involved from the beginning if AIDS treatment programmes were going to work.

‘€œResearchers only go to communities to tell them what is going to happen to them, not to ask them what they want to happen,’€ said Noe.

E-mail Kerry Cullinan