States, AIDS Experts Test Boundaries of HIV testing

Image: Flickr, anqa
Image: Flickr, anqa

As treatments become more available, particularly in developing countries, the line between a patient's health status and right to privacy is beginning to shift.

More than 2 million Africans died of AIDS last year and 3 million others were newly infected with the virus that causes the disease, yet it is estimated that in most African countries fewer than 10% of the population know their status.

Testing for the human immuno-deficiency virus is one of the thorniest aspects of a health debate fraught with human rights implications. AIDS activists have long argued that infringing on the right to privacy – by, for example, making HIV testing mandatory – effectively drives the AIDS epidemic further underground. Why find out if you’re infected if the consequences are persecution, ostracism, violence and destitution?

International organisations such as UNAIDS and the World Health Organisation (WHO), consequently, hued strictly to the view that voluntary counselling and testing, in which the patient elects to find out his or her status, was the only appropriate approach.

But tiptoeing around the issue of testing did little to either check the epidemic or alleviate stigma in the countries with the highest infection rates and most entrenched and aggressive discrimination against people with HIV. Now, however, as more countries consider or begin making costly AIDS drugs more widely available, views on testing are starting to shift. In an era of treatment, more governments, businesses and health organisations are pushing a proactive approach to HIV testing, hoping to strike a more constructive balance between individual rights and the need to monitor and contain the epidemic.

In a fundamental policy shift that underscores the changing course of the AIDS epidemic globally, both UNAIDS and the WHO have now embraced an approach that encourages health-care providers to offer HIV tests as a routine part of patient check-ups in AIDS-stricken countries.

‘At the moment there are millions of missed opportunities’ to test people for HIV, said Peter Piot, head of UNAIDS, during the XV International Conference on HIV/AIDS in Bangkok in July. ‘The environment of AIDS is changing dramatically…. [There is] a fundamental shift in the response, where treatment is becoming far more available.’

Not everyone backs the shift. Some AIDS experts and human rights activists remain sceptical, warning that many developing countries do not yet have the means to effectively apply new strategies like routine, or ‘opt out’, testing, in which health-care providers make a point of offering HIV tests. They fear that the rights of patients – bought at a great price over many years of battling stigma – are at risk.

‘I don’t have a problem with routine testing as a concept,’ said Shannon England, manager of voluntary counselling and testing (VCT) for the Washington-based NGO Population Services International. ‘But you need to ensure that it’s done correctly and sensitively. I worry that it will be used as an excuse to ignore people’s rights.’

Despite such reservations, the new approach is starting to catch on. So far, four African countries are either implementing or drafting policies to adopt the new testing guidelines endorsed by the WHO and UNAIDS in June.

The change in strategy has been driven largely by the realisation that ambitious plans to provide anti-retroviral drugs to people with AIDS – like the WHO’s ‘3X5’ programme, which hopes to put 3 million people in developing countries on such treatments by 2005 – are likely to fail unless more people learn their status.

At least 20 African countries have begun or have plans to roll out limited public anti-retroviral programmes. But according to the Global Business Coalition on AIDS, a New York-based coalition of multinational companies, 500,000 people will need to be tested every day in order to meet the WHO’s goal using the current VCT model, which relies on people taking the initiative to find out their status and often misses those at highest risk of infection.

HIV testing has long been seen as primarily a preventative measure: Numerous studies have shown that people who know their status and have received counselling are more likely to change their behaviour, although little research has been done on the effect on behaviour of testing without counselling. As a result, until recently, the only testing provided in most African countries was through a handful of VCT centres run or funded largely by international non-governmental organisations.

‘AIDS exceptionalism’

In the absence of anti-retroviral treatment many health professionals believed there was little value to widespread HIV testing in a medical context. Consequently, such testing was largely separated from other medical programmes and most hospitals and clinics did not offer HIV tests.

The international community’s emphasis on counselling may also have served as a disincentive to test. In many public hospitals and clinics, heavy case loads made offering the kind of personalised counselling supported by international organisations impossible.

While universal anti-retroviral access for people with AIDS is still years away, many countries have now changed their position on HIV testing, realizing that neither prevention nor treatment programmes will succeed until a majority of people know whether they are infected.

The potential costs of inaction are staggering: By 2010, according to the UN, there will be 20 million orphans in Sub-Saharan Africa, 60% of the continent’s current 15-year-olds will not reach the age of 60 and the labour force will be as much as 35% smaller.

In some countries high-profile politicians have led the drive to promote testing: Lesotho’s prime minister, Pakalitha Mosisili, and former Zambian president Kenneth Kaunda, for example, have gone publicly to get tested. The government of Namibia launched a media campaign to promote ‘Know Your Status’ year and has opened several new testing centres in co-operation with international NGOs, while in Swaziland the UN Children’s Fund and the University of Swaziland have piloted a new method of rapid testing among students. The Tanzanian government is advising people to get tested before they marry, while a Kenyan organisation, the Kenya Medical Research Institute, has begun producing rapid HIV test kits.

Perhaps the most promising new strategy in Africa, however, is the opt-out approach to testing. In the past year, Botswana, Malawi and Lesotho, with guidance from a group of international scientists in Nairobi, have begun to offer HIV tests regularly in public hospitals and clinics to people exhibiting signs of infection, mothers seeking prenatal care and clients at clinics specialising in sexually transmitted infections. A fourth country, Kenya, is drafting a policy framework to do the same.

Patients still have the right to refuse testing, but the hope is that by offering HIV tests as a routine part of treatment at regular health-care systems, more people will be encouraged to find out their status and, over time, stigma will lessen.

Routing testing ‘integrates. It normalises the disease more,’ said Banu Khan, head of the National AIDS Council in Botswana, the first country to implement the new system. ‘It doesn’t make it stand out as a separate thing. And it provides people with different options.’

The primary motive behind the change in policy, says Ernest Darkoh, head of Botswana’s anti-retroviral programme, is to identify people who would benefit from newly introduced treatment strategies. Botswana, Dr. Darkoh points out, has a free, universal anti-retroviral programme called Masa, or ‘new dawn’, as well as a short-course ARV treatment regime that can reduce viral transmission from mother to child during birth. While enrolment in these programmes is on the increase, many people still come forward too late, he says, either when the disease is too advanced to treat effectively or they are about to give birth.

Unlike South Africa, which primarily uses a single-dose anti-retroviral treatment to reduce the transmission of HIV from mothers to their children during birth, Botswana gives pregnant women a course of ARV drugs that lasts several months and is more expensive but also more effective and less likely to cause future resistance to the drugs.

Government officials in Botswana, where close to 40% of adults are HIV-positive, according to UNAIDS, hope that when more people know their status, they will talk more openly about the disease and be more willing to take steps to protect themselves and their loved ones.

The rights equation

Although the directors of both of the WHO and UNAIDS embraced more proactive policies on HIV testing at the Bangkok AIDS conference, routine testing remains a controversial issue and efforts to implement new approaches in some countries, like Zambia, have been blocked by local activists and religious groups.

Many human rights organizations worry that offering routine testing could erode the rights of patients to withhold their consent or that patients will be coerced into deciding without full knowledge of the procedure and its potential impact.

For these critics, the word ‘routine’ suggests mandatory testing, which is still considered a rights violation in all but rare circumstances. Many countries, for example, require testing of military personnel, a position the UN still opposes despite anecdotal evidence that international peacekeeping forces contribute to the spread of the epidemic.

Prior to the policy shifts both at the national and international level, standard practice for HIV testing emphasised not only that a patient must consent to being tested, but that they must be educated as to the consequences of that decision. In some countries, such as South Africa, the courts have ruled that the burden of providing adequate information on the costs and benefits of taking an HIV test falls on the health care provider. In the 1996 case C v. Minister of Correctional Services, a South African court ruled that although a prisoner had consented to an HIV test, he had not given informed consent because he had not received pre-test counselling and was required to make his decision on short notice.

Increasingly, however, the emphasis on confidentiality and consent is being re-evaluated, especially in Africa, where the epidemic is devastating the social and economic fabric of whole regions. But the heavy burden placed on health professionals to ensure that the patient is fully informed has been a barrier to widespread testing.

In an ‘opt out’ system, in theory, a patient must still give his consent, and the health-care worker must still inform a patient of the costs and benefits of being tested as well as their right to refuse. But this information need not be administered in as formal a manner as in the VCT approach, which usually includes 15 to 30 minutes of individual pre-test counselling. In some antenatal clinics in Botswana, for example, the government is conducting group counselling in the waiting room, using the idle time before patients are seen by the doctor to explain the benefits of getting an HIV test (in particular the availability of short-course anti-retroviral therapy to prevent mother-to-child transmission).

The increasing availability of treatment for infected people has also changed the human rights equation, many AIDS experts say. When treatment was little but a distant dream for most poor people with the disease, many – including some involved in AIDS work – believed that the disadvantages of finding out one’s status, including stigmatisation and, for women, domestic violence, outweighed the advantages.

But as anti-retroviral treatment becomes more widely available, proponents of the policy changes argue, the scales are starting to shift in favour of more proactive approaches to testing.

‘Many ministries of health were and still are grappling with these issues, not quite knowing what to do, in a way waiting for permission to change and push forward with more routine and diagnostic testing,’ said one Western researcher based in Africa who supports routine testing. ‘It either takes a senior leader like the president of Botswana or it takes the international organisations like the WHO and UNAIDS putting out a statement saying this is an okay thing to do.’

The human-rights ethos of AIDS dates to the early days of the epidemic. Stigmas developed in part because of the nature of the disease: HIV is infectious, fatal if not contained, and transmitted through the some of the most-often condemned of human activities. In the US, where AIDS was first identified, fear of the disease was exacerbated in the early years by moral condemnation of the main methods of transfer – intravenous drug use and homosexual sex.

Since identification as HIV-positive imposed the dual burden of carrying a frightening new infectious disease and membership in an already stigmatised group, gay-rights groups demanded steps be taken to protect them. Worried about driving the epidemic ‘underground,’ American health professionals agreed not to adopt prevention methods that would put people with AIDS at greater risk of persecution or discrimination.

What emerged, according to Ronald Bayer, a professor of medical ethics at Columbia University in New York, was a system of ‘AIDS exceptionalism’ under which AIDS was treated differently from other infectious diseases and the normal responses to a new health crisis, including widespread testing and contact tracing, were deemed violations of human rights.

The VCT model, which was developed in the US in the mid-1980s and brought to African countries by international health organisations almost a decade later, was born out of the stress on confidentiality and consent. By relying on people to come forward on their own initiative as well as protecting every patient’s identity, the model addressed concerns that people would be tested without their permission and the results of those tests used to discriminate against them.

A system based on secrecy and consent, however, also limited responses to the epidemic. Prevention efforts were dependant almost entirely on messages about modifying personal behaviour communicated through individual counselling sessions at the time of testing and mass-media campaigns that did not necessarily target those most at risk from infection.

Attitudes towards consent and privacy began changing dramatically in the US in the mid-1990s after anti-retroviral regimes became widely available, but the rest of the world has been slow to follow. Even as industrialised nations were beginning to adopt partner-notification programmes and routine testing of pregnant women, poorer, harder hit countries unable to provide the public with expensive treatment were relying increasingly on the VCT model.

Into the breach

In the past few years, a growing number of African and Western health experts have been questioning the reliance on VCT and its appropriateness in the context of an epidemic that affects the population as a whole rather than specific high-risk groups.

They argue that many people who most need HIV tests were not coming forward to VCT clinics for fear of testing positive or being stigmatised. Few countries, meanwhile, had the capacity to supply VCT widely enough. Botswana, for example, has only 16 VCT facilities. Finally, by separating testing facilities from general health care and social services, health providers made it difficult for people who tested positive to access even the treatment programmes that were available.

For several years, the debate questioning the value of VCT took place quietly in the background, until a group of American scientists working for the Nairobi office of the Centers for Disease Control and Prevention (CDC) published a controversial paper in the influential British medical journal The Lancet in 2002 calling for a re-evaluation of the influence of human-rights concerns in AIDS prevention and treatment.

In that paper, ‘Shadows on the Continent,’ Kevin de ***** and his colleagues argued that AIDS exceptionalism had hindered efforts to combat the spread of the epidemic: ‘HIV testing, available since 1985, has been restricted for medical as well as prevention purposes because of a strong emphasis on informed consent and counselling. Unlike other infections diseases (e.g. syphilis and hepatitis B), for which consent for testing is implicitly assumed by virtue of medical consultation, and diagnosis is encouraged, the diagnosis of HIV infection has often been actively avoided.’

The 2002 paper, and another article by the same CDC group published a year later also arguing in favour of offering HIV tests in clinics that focus on antenatal care and sexually transmitted infections, re-ignited the debate.

In November 2002, a month after Dr de *****’s first paper was published and at a moment when the prices for anti-retroviral drugs were falling dramatically and treatment for people with AIDS in resource-poor countries was becoming a possibility, AIDS experts at the UN met to re-evaluate international testing policies and agreed that a routine offer of testing should be made in health-care settings.

‘What made us change our position is the fact that VCT wasn’t working,’ says David Miller, now the WHO’s ombudsman, but previously the organisation’s technical adviser on HIV testing and one of the drafters of the UN’s original 1985 testing policy. ‘It was perceived by many people to be a bottleneck to enabling radically increased access to treatment. I think also, in many countries, the stigma related to knowing your status or to being positive had not been effectively addressed, so that there was still a great reluctance to engage in the testing and counselling process because it was felt by populations that the only thing they would get out of engaging in testing was social punishment.’

Although Miller says the outcome of the 2002 meeting constituted an official change in UN policy on testing, support for the new approach was poorly publicised and it wasn’t until June of this year that the WHO and UNAIDS issued guidelines endorsing new approaches to testing, including routine testing, almost exactly as outlined in the second Lancet paper by the CDC Nairobi group.

Testing ground

Botswana was the first African country to embrace the new guidelines. The government, including President Festus Mogae who has taken an active interest in AIDS issues, first became interested in routine testing after a visit from one of the Nairobi group. Initially, some government officials expressed their support for the idea in terms that alarmed the international community, arguing, for example, that the VCT model had in fact deepened stigma by setting AIDS apart from other illnesses. After meeting with civil society and AIDS groups, the government toned down its rhetoric and secured widespread support for the new approach.

‘Botswana is a real laboratory for this,’ Miller says. ‘You’ve got a population where 40% of the adult population is affected and yet still people won’t discuss it.

‘When the Botswana policy was being discussed internally, it was being discussed in very passionate terms – in terms that were not always giving due observance to human rights. I think the triumph of the Botswana process was that they could include a rights-based process in the process of increasing access to testing,’ Miller says.

Government officials say routine testing has dramatically increased the number of people getting tested in Botswana. In most clinics, Dr Khan says, 90% of patients now consent to testing. And according to one study by BOTUSA, a joint project with the CDC and government of Botswana, routine testing in an antenatal clinic in the city of Francistown has substantially increased the number of pregnant women enrolling in programmes to prevent the transmission of the virus to their infants during birth.

But the gap between policy and implementation remains large, and some civil society groups, worried that the public remains largely uninformed about the new testing plan, are beginning to reconsider their support for the new strategy. In Lesotho, meanwhile, the new strategy is only slowly being communicated to medical staff and most clinics and hospitals face a constant shortage of testing kits.

In October 2003, the Botswana Network on Ethnics, Law and HIV/AIDS (BONELA) held a conference of government officials, AIDS organisations, doctors and lawyers to debate the implementation of routine testing in Botswana. After hearing from health department officials, Willem Landman, a professor at the Ethnics Institute of South Africa, and human rights organisations, participants concluded that the routine offer of HIV tests in medical settings was acceptable only if patients were informed of their right to refuse the test and their confidentiality was maintained.

In addition to criticising the government for failing to launch a public information campaign about the new policy – which Khan says is in the works – BONELA claims it has received numerous complaints from patients who say they were not adequately informed about the test or their right of refusal. In some cases, patients say they were not aware they were being tested until they were informed of the results.

‘The way they describe what they are supposed to be doing, it looks a lot better than what is actually happening,’ said Christine Stegling, director of BONELA. ‘In many cases, there’s no real conversation with the health-care provider about the test.’

‘While people can’t name what’s killing their neighbours and their family members, there’s going to be an immense reluctance to learn their own status,’ Miller says. ‘We felt it was important to do all we could to help populations come to terms with the reality of HIV, and there’s more than one way to do that.’