The scope of the HIV disaster that South Africa is facing may justify a move towards compulsory (though confidential) HIV testing, according to Dr Francois Venter, one of the country’s leading clinicians.
“The current voluntary counselling and testing (VCT) model is not working…and provider initiated-testing and counselling (PITC) [a new testing policy recommended by WHO and described in more detail below] is quite a brave WHO document… I think we need it but we must acknowledge that it’s not what’s going to save this country,” he said at a roundtable debate at the South African AIDS Conference on how to more rapidly scale up HIV testing in that country. “At some point we have to take stock and say that this is a disease that is killing 50% of South Africans. How long do we wait before we try to do something completely different?”
His position served as a foil for most of the other panellists at the roundtable — but judging by the applause and subsequent audience participation, he clearly had the support of most of the packed room. Nevertheless, on the last day of the meeting, the conference declaration on ‘building consensus’ (which civil society had a large hand in drafting), indicated that most advocacy efforts will continue to focus on increasing access to VCT - an approach that Dr Venter describes as “business as usual”.
“We sat here two years ago with the same debate and things haven’t changed.
People are not testing and that’s the reality - but it’s not simply because we can’t walk across the road and get an HIV test.”
Testing modalities
VCT was devised in the North, at a time when there was no effective therapy for HIV and when the disease primarily affected vulnerable groups such as men who have sex with men and injection drug users. Its introduction into sub-Saharan Africa, where the epidemic affects the general population, was justified on the basis that treatment was not yet available there; people with HIV had legal few protections and were subject to discrimination and violence; and because of the profound stigma attached to the disease.
However, even as antiretroviral therapy (ART) has been rolled out over the last several years in some resource-limited settings, it was noted the demand for HIV testing from VCT services often remained low, even where it is easily accessible. So some countries, notably Botswana, pioneered a more aggressive means of testing, including offering routine provider-initiated testing and counselling (PITC) to everyone coming into health facilities. Formerly, this was referred to as routine opt-out testing, because people should be given the choice to refuse the test. Human rights advocacy groups have opposed the scale-up of this testing modality, arguing that some people have been tested unknowingly or against their wills - so that, in effect, it can amount to mandatory testing.
Rate of testing remains low in South Africa
Despite an alarmingly high rate of recent HIV transmission, with over 571,000 estimated new infections (not including perinatal transmission) according to a 2005 Human Sciences Research Council (HSRC) survey, only about 2% of South African’s took an HIV test within the past year.
The 2005 survey also reported that one of the most common reasons that South Africans don’t test is because they don’t perceive themselves to be at risk. 66% percent thought that they were probably or definitely not at risk for HIV. Of note, more than half of those who tested positive had thought the same thing.
The low rate of testing has profound consequences for the nation. Studies have now shown that ignorance of one’s status contributes to the onward spread of HIV and perpetuates the AIDS epidemic. In addition, although the ART rollout is finally on track in South Africa (with over 230,000 South Africans now on treatment), over 540,000 South Africans who would qualify for treatment aren’t receiving it - many simply because they have not been tested. Around 300,000 die each year of HIV/AIDS.
The last roundtable ‘debate’
Two years ago, at the previous South African AIDS conference, a similar roundtable discussion was held on HIV testing - with a focus on whether opt-out/PITC was an acceptable modality. However, there was not one person on the panel speaking in defence of the PITC approach. Mark Heywood of the Treatment Action Campaign was listed on the programme as the person who was going to speak about opt-out testing. But when his turn came to speak, he said that he wouldn’t speak in favour of opt-testing but rather supported ‘opt-in’ testing, in which clients could ask their providers for an HIV test. So the roundtable discussion was extremely one-sided, with the panellists all agreeing about how good and important they felt VCT was, and how it needed to be scaled out more effectively.
Finally, a nurse stormed the stage, grabbed the microphone and said: “when is someone going to start telling the truth?” She said that thousands of people in hospitals were dying of AIDS and yet healthcare providers were not allowed to test them for HIV - which is the first step towards offering them effective life-saving treatment. She got a lot of support from doctors and nurses in the audience, but the debate quickly degenerated into a shouting match between those trying to provide treatment to patients versus civil society and VCT staff defending the right to choice.
Since that time, while the debate has gone on in South Africa, other countries have moved ahead with more aggressive forms of testing including PITC, universal testing and door-to-door testing (see the testing section in HATIP). In addition, WHO has endorsed introducing PITC together with expanding VCT, and has recently released guidelines to assist countries to standardise and expand provider-initiated testing and counselling through healthcare facilities.
Shifting the goal posts
This year’s debate began just before the AIDS conference, when the Sunday Times published a call from Dr. Venter to “Make HIV tests compulsory for South Africans”.
For those outside of the South Africa, it is important to point out that Dr Venter is neither a crack-pot nor an authoritarian looking to round up people with HIV and put them into camps. He is a highly esteemed clinician and holds a number of important posts, but he is quick to point out that when it comes to his stance on testing he is acting his personal capacity (and probably at considerable professional risk). But no one in South Africa questions his commitment or his motives - which makes him a rather unique proponent of this view.
In the editorial, Dr Venter described VCT as “well intentioned but deeply flawed. It is failing and has failed throughout the world”.
He said that the adoption of PITC would not go far enough because the capacity is too limited within healthcare facilities to take on much more testing, and because it would only reach “the ill and the pregnant”.
Instead, Dr. Venter recommends a universal testing policy in South Africa that would encourage testing either through incentive-linked systems (tax rebates or an addition to the individual’s social security grants) or by making testing an obligation. Under the latter option, the individual would have to provide evidence of a recent HIV test - though not the test result itself, which he stresses must be confidential - whenever dealing with bureaucratic structures in South Africa (for example, when applying for drivers’ licences, bank cards, marriage licences, pensions etc).
“The emphasis on voluntary counselling and testing has allowed individual autonomy to trump public health, regardless of the consequences to broader society,” he wrote. Although human rights advocates are opposed to making testing universal because it would “violate autonomy and choice - the ‘right not to know’,” he noted that, “there are many instances where the state imposes benign legislation to assist with individual and public health. It legislates around a range of issues for the individual’s own good: seat belts are compulsory, [and] smoking is restricted…”
His viewpoint can be read in full here.
Dr. Venter’s reaction
“Lie number one is that testing is voluntary in this country”, he said, pointing out that anyone with an insurance policy in South Africa is required to get an HIV test. “I’ve had about 12 HIV tests, 11 of them were because I went for an insurance policy. I got forced 11 times - no consent - just sign the waiver. Nobody’s marching in the streets demanding my right to get the counter process.”
He stressed it is only the people accessing care through the public health facilities who are afforded the “right not to know” - usually with disastrous consequences for their own health.
Testing people who are ill in facilities is necessary to manage their health, and Dr Venter stressed that it is already happening.
Dr Venter doesn’t believe PITC will test enough people to have an impact on South Africa’s epidemic.
“With PITC we will test the sick and the fertile,” he said. “I have not been to health institutions for myself, for my own health, in 18 years. So you have failed me. This policy does not address all these people such as healthy men.”
Furthermore, he doesn’t believe there is adequate capacity within the health facilities to expand testing.
“It is going to take a huge resource commitment and I think it’s going to be burdensome, he said. “You must realise you’re talking about some of the busiest parts of the State sector.”
Some of the audience members expressed similar frustrations.
“This PITC sounds very much like something I’m already doing,” said Dr Moloko from Gauteng. “How is it supposed to make me test more patients?”
And yet, one possible critique of Dr. Venter’s compulsory testing model is that it will take a tremendous influx of resources as well. More resources will be required whatever the testing modalities employed.
Dr. Venter also complains that the current testing approaches do not adequately link to services, especially for healthier people who test positive.
“If you know your status and you cannot get access to care, that is the disaster.
And that’s what’s staring at our country at the moment is the fact that when you test positive and your CD4 cell count is 800, you have nowhere to go,” he said. “What do we give our patients in the public health sector? Ooh, please don’t smoke and please eat properly. You know, that old lecture.”
And yet, it is difficult to see how testing massive numbers of people outside the health system is going to do a better job at the provision of services for people with HIV. Dr. Venter thinks that the large numbers who test positive will compel the government to provide those services. But that’s a pretty big leap of faith, and even if so, could take a very long time.
This year’s roundtable
Most of the panellists this year disagreed with Dr Venter’s call for compulsory testing, and at the start of his talk at this year’s roundtable, Dr. Venter said that the debate seemed to be a carbon copy of the one two years earlier.
But that wasn’t entirely accurate because a range of views were presented. For starters, he was there; and two years ago, the panellists wouldn’t even consider PITC. Included on the panel this year, was Ian Grubb, one of the lead authors of WHO’s recent guidance on PITC, and an ethicist, Professor Thad Metz of Witz University, who stated that there was nothing inherently wrong about routinely offering someone an HIV test in a health facility (PITC), as long as the offer was specific and explicit (they were given a clear choice to turn it down).
Professor Metz rejected human rights advocates’ complaint that, in PITC, the unequal power relationship between doctors and patients amounts to coercion, replying: “If it were coercive any time patients were offered something, then in virtually no case would it be permissible to treat them, which would be absurd. For instance, it would forbid offering antiretrovirals to patients who need them”.
Heidi van Rooyen, Project Manager for Project Accept at the Human Sciences Research Council and a panellist both two years ago and this year in support of VCT said that she was “tired of the debate” and she seemed to be open to the integrating PITC into the range of options used in South Africa.
She believes that the debate has begun to hinder implementation: “We need to move to the point where more people could benefit from any of these counselling and testing policies. We do need to look at increasing options as treatment becomes available. Polarisation has not been helpful. What has been obscured by the debate is that perhaps we are talking about some shared things; perhaps we do have an understanding of how to move forward.”
She said that provider initiated strategies meet a different need from VCT, but one which is equally important. “Perhaps the goal of PITC is not behaviour change,” she said. Perhaps it’s about trying to increase access to treatment.”
So, rather quietly it seems, what was so controversial two years ago (PITC) appears to have become acceptable.
However, she was clear that she thinks compulsory testing would be a violation of human rights.
“Promotion of compulsory or involuntary testing is dangerous and undermines gains made in the past rights,” she said.
A sense of urgency
So some of the logistics of what Dr Venter is suggesting have yet to be fleshed out. Furthermore, in a country where the leadership has yet to acknowledge that HIV is cause of AIDS, it is difficult to imagine that HIV testing would become mandatory. In such an environment, it is questionable whether there truly has been an adequate push to get people in to be tested voluntarily. In addition, there is some merit to the argument that accessibility to testing has been limited by the country’s refusal to permit lay counsellors to perform HIV tests.
But civil society may also deserve a portion of the blame for not yet creating what Van Rooyen described as “a culture of testing”. But given what has gone before, efforts to start this now may be too little, too late.
“That mandatory testing thing I talked about. Let’s be honest - none of us want that. I really would prefer it if we could get people to test at their local sites,” he said. But he feels that the nation is locked in a collective denial about HIV and part of the reason why he was driven to make the call has been the death of staff members in the hospital where he works.
“Our staff are dying of HIV in places with the best access to the best VCT. Where you can go 5 metres and get access to HIV testing with some of the best counsellors of all. Our staff are dying because they don’t want to test - they come with cryptococcal meningitis and disseminated KS. That’s not a disease of ignorance, that’s a disease of denial - and I think we must start acknowledging that,” he said
What may be the most important contribution that Dr. Venter is making to the debate, and one that almost everyone agrees with, is a sense of urgency.
“I hope there’s a middle road. But all I’m hearing is, “Let’s do more”. Einstein said the definition of insanity is when you do the same thing over and over again and expect a different result. That’s what I’m hearing, ‘Let’s keep doing the same thing in 2 years time, we’ll come back here and it will be 3% [who have tested}.’ Let’s move beyond the rhetoric,” he concluded.
But he wasn’t the only one thinking this way and willing to express themselves.
“If we [South Africa] started having mandatory testing today,” said Dr Moloko from Gauteng, “two years from now it would be old hat. Everybody would be testing and all this human rights thing would be forgotten.”
And while the civil society representatives on the panel remained quiet, it seemed that everyone else in the room applauded.