South Africans debating HIV testing: voluntary or opt-out?

South African Supreme Court of Appeals Judge and HIV positive activist Edwin Cameron has added his voice to an international debate that has been mounting in recent months surrounding HIV testing.

Despite high levels of knowledge about the existence of HIV and the increasing provision of life-prolonging drugs through the public health sector, an estimated two million of the six million South Africans living with HIV/AIDS do not know their status.

At a memorial lecture earlier this month for his friend, law professor Ronald Louw, Cameron recounted how Louw had wilfully ignored all the telltale signs that he was harbouring the virus. Waiting until he was too sick to benefit from treatment, Louw was finally tested just seven weeks before his death.

Cameron asserted that the special protocols and procedures for HIV testing and diagnosis reinforced "the internal dimension of stigma" that had prevented Louw and others like him from taking a test.

"People shy away from being tested because the requirements relating to consent and counselling accentuate the differentness and distinctness and horror of AIDS," Cameron said.

He argued that the protocols aimed at protecting the human rights of people testing for HIV were designed for a different time, when the stigma associated with HIV was at its height and knowing one's status offered no guarantee of treatment.

"The world has changed, and the epidemic has changed," Cameron maintained. He suggested that where antiretroviral (ARV) treatment was available, and HIV testing was confidential and would not lead to discrimination, it should be a normal part of medical treatment, offered as a matter of course unless the patient 'opted out' by expressly refusing it.

Voluntary counselling and testing (VCT) remains the standard in South Africa, but routine or 'opt-out' HIV testing has been gaining support in other parts of the world. Botswana was the first African country to introduce it in 2004, after the launch of its national ARV programme failed to attract the expected numbers of people.

Integrating HIV testing into conventional health services in Botswana has increased testing uptake from 64 percent in 2004 to 83 percent in 2005, while the number of HIV positive pregnant women accessing anti-AIDS drugs to prevent mother-to-child transmission has also risen significantly.

The World Health Organization now recommends routinely offering an HIV test if ARV treatment is available, and the United States Centers for Disease Control (CDC) is expected to release new guidelines next month, aimed at making HIV testing a routine a part of American healthcare.

Doctors, activists and experts in the field of HIV/AIDS interviewed by PlusNews mostly echoed Cameron's support for the introduction of routine testing in South Africa as a way of reducing both stigma and HIV transmission, and alerting patients at an early stage of the disease when interventions are more effective.

Dr Janet Giddy, who coordinates HIV programmes at McCord Hospital in the east-coast city of Durban, believes routine testing could go a long way towards viewing HIV as another manageable chronic disease.

"There's this perception that you only test for HIV when you're sick, and yet people have this idea you must have a pap smear or blood-pressure check from time to time," she said. "It should be same with an HIV test, it should just be part of a general health screening process."

More controversial is Cameron's suggestion that pre-test counselling may be "a luxury we can no longer afford" in resource-poor settings, where the time and energy of healthcare workers is often drained away from diagnosis and treatment, and that the counselling requirement has become "an impediment to the effective management of the disease".

Jason Wessenaar, a facilitator at the Stigma Project of the University of Pretoria's Centre for the Study of AIDS, supports routine testing as potentially effective in reducing stigma, but disagrees with Cameron on the issue of pre-test counselling.

"I speak as a person living with HIV, who never received any pre-test counselling," Wessenaar said. "Our research has shown that a lot of people felt that without pre-test counselling it was very difficult for them to accept their status and to disclose, and they continued to put their loved ones at risk. I strongly feel we shouldn't go that route."

Giddy contended that a shortage of trained counsellors, combined with "the whole rigmarole around testing" could act as a deterrent to testing, and agreed with Cameron that the availability of ARV treatment demanded a new approach. "I think if the health department, in principle, says, 'we will offer HIV tests whenever and wherever we can', it gives a message to the population that HIV is an illness like any other illness."

She is involved in a new research project at McCord's antenatal clinic to evaluate the quality and usefulness of pre-test counselling as part of the traditional VCT approach and, depending on the results, may lead to the introduction of routine or 'opt-out' testing at the clinic. Giddy is careful to emphasize that appropriate post-test counselling would continue to play an essential role, just as it would after the diagnosis of any serious condition.

But Christine Stegling, Director of the Botswana Network on Ethics, Law and AIDS, felt strongly that operating in a resource-poor setting was not an excuse for dispensing with counselling.

"We've always been supportive of a routine offer of testing, but the patient must be in a position to make an informed choice," she said, adding that the counsellor should be able to gauge the patient's level of knowledge. "It doesn't cost millions to have a meaningful conversation with your patient."

Whether or not people agree with Cameron's point of view, many in the field who feel the VCT approach is due for a rethink have welcomed the debate it has generated.

Giddy notes that, according to Cameron, pre-test counselling has never been a legal requirement in South Africa but was merely recommended by the medical profession as part of ethical guidelines.

"For a number of years it was probably useful, but then it became entrenched as routine and we haven't interrogated it enough since," she said. "It is only the medical profession who can now reverse this."