Aids notification

One of Dr Nkosazana Zuma’s last acts as minister of health was to announce in the Government Gazette of April 23 her intention to declare Aids a notifiable disease. Although this policy has qualified support from the other political parties, Aids activists and specialists have always vehemently opposed it. Zuma solved this by the simple expedient of sacking her Aids advisers. Now the demoralised workers in this field have been given new heart: a government U-turn on its notification policy seems highly likely.

Judge Edwin Cameron, who has courageously declared that he is HIV positive, traces the origin of the idea of compulsory Aids notification in South Africa to a remarkably ironic source: Dr Amanda Holmshaw, who was, as the judge points out, “the [white] head of the apartheid government’s Aids unit”. In 1991, Holmshaw argued that squeamishness about patients’ right to confidentiality was seriously hindering the fight against the disease and was, in any case, irrelevant to African social conditions where “Western-style notions of individualism” did not apply.

The notion that confidentiality about HIV status and Aids was, perhaps, not applicable in Africa was raised again by Dr Olive Shisana, the director-general of the health department, at a meeting of the Southern African Development Community in December 1996. She argued that SADC countries needed to “discuss with our communities whether our restrictive policy on disclosure was hindering or enabling the spread of HIV infection”. Shisana did, though, express concern about whether disclosure might expose women to violence and insisted that an open disclosure policy should be accompanied by legislative and other measures to prevent discrimination against HIV positive people.

This cautious proposal was greeted with considerable protest from Aids activists, but with approval by Dr Nthato Motlana — the Mandela family doctor, clinic owner and former executive director of New Africa Investments — and on the editorial page of the Sowetan. In September 1997, Zuma announced in Parliament her intention to declare Aids notifiable, but following further opposition — in particular from the Law Commission’s committee on HIV/Aids (chaired by Edwin Cameron) — the regulation did not make its way into the Government Gazette until April this year.

One of Zuma’s dismissed advisors Mary Crewe, now director of the Centre for the Study of Aids at Pretoria University, believes that the health minister forged ahead with the policy in the face of opposition because she was under increasing pressure to be seen to be “doing something” about the epidemic. Crewe suspects that the minister felt increasingly beleaguered and distrustful of outside advice on HIV/Aids policy. It is not surprising that the legendarily forthright and stubborn Zuma should turn to the bluntest possible version of a policy which was known to be popular, seemed attractively “Africanist” and would definitely be seen as doing something.

Her proposed regulation is far-reaching. It obliges medical practitioners on diagnosing someone as suffering from Aids, not just to inform both local and national health authorities, but to give “any available information concerning the probable place and source of infection”. The doctors are further required to inform the patients’ carers and immediate family members and to warn people “responsible for the preparation of the body” that the corpse in their charge is an Aids victim.

Zuma argued that the proposed regulation would have many benefits including:
• creating greater public awareness — large numbers of people would be officially informed that their relatives or partners have Aids, which should help to spread accurate information about the disease;
• encouraging people to modify their sexual and other behaviour in ways likely to slow the spread of the epidemic;
• protecting health care workers and caregivers from the risk of accidental infection associated with caring for people with Aids without knowing that they are infected;
• providing the department of health with the mass data that it needs to track the course of the disease, discover the kinds of opportunistic infections with which Aids is associated, plan and budget with increased accuracy for the bed-space and equipment requirements created by the epidemic, and create Aids education campaigns precisely targeted at particularly vulnerable groups.
At first sight, these regulations seem, perhaps, a little invasive and ghoulish — but given the severity of the Aids epidemic and the virulence of the disease, eminently sensible and necessary. But when the head of the health department’s Aids directorate, Dr Nothemba “Nono” Simelela spoke to a meeting of Aids activists and experts, business and trade union representatives on the subject in Pretoria on July 22 she emphasised that the directorate would greatly welcome further input, particularly written submissions. At the same time she detailed some of the objections to the notification regulations that the department had already received.

First among these comes from the health department’s own lawyers, in whose opinion the new regulations are vulnerable to legal challenges. The Supreme Court of Appeal, South Africa’s highest court on non-constitutional matters, has ruled that doctors’duty to keep their Aids patients’ illness confidential is an integral part of their professional obligations and that failure to do so is actionable. All South African courts are bound by this precedent. There is also a good chance that the Constitutional Court would find them incompatible with sections 10 (the right to dignity) and 14 (privacy) of the Constitution.

Simelela, a senior lecturer in obstetrics and gynaecology at Medunsa before moving to the directorate last December, then admitted that the department had not carried out a cost-benefit analysis of the notification proposal. She had no idea how much it would cost or whether the information gathered would be of any real use either to health planners or to doctors in the wards of the big hospitals or to nurses in rural clinics. She doubted whether it was appropriate to try to “relegate responsibility for our sexual drives to a government, to laws”.

On the issue of caregiver and family notification, she noted that the policy had been formulated before the murder of Gugu Dlamini — a KwaMashu Aids activist who was been beaten to death by local youths in December last year after she had publicly declared that she was HIV-positive. Simelela worried about how young children would feel when they were officially notified that their mothers were soon to die of Aids and that their own chances of seeing their teens were no better than even. She did not feel confident that rural primary health nurses would be willing or able not to tell “the rest of the village” once they had been informed — as the regulations would require — who had Aids. Simelela, concluded by repeating her request for further policy input from NGOs and other interest groups or, to put it another way, for more ammunition against the draft regulations Zuma had bequeathed her.

From the distinctly frosty atmosphere at the outset of the meeting, the room visibly thawed as Simelela spoke and at the end of her talk she was very warmly applauded indeed. Questions were then called for. From an inconspicuous seat at the back of the room rose the distinguished and beautifully dressed form of Dr Nthato Motlana, evidently attending the meeting in his capacity as chairman of the South African Business Council on Aids. He began by asking the director to repeat herself from the beginning. The public address system had not been very loud, it was true, but Motlana gave more the impression of someone who simply could not believe his ears.

Simelela obligingly started to re-state her position, but was soon interrupted by Motlana, advocating a notification system considerably more draconian even than that proposed by Zuma’s draft regulations. South Africa, he said, was in a very serious crisis and it had to be confronted. There had been enough pussy-footing around, enough of being influenced by “these human rights activists” with their politically correct insistence on the confidentiality of one’s HIV status. We had to come to grips with the Aids epidemic and one of the most effective ways of doing this was through notification not just of Aids but HIV status as well. As he put it, “South Africa must bloody well know” if someone was infected with the human immuno-deficiency virus. There should be compulsory testing of every South African for HIV status and the names and addresses of those infected should be a matter of public record. “Employers and everyone else” had the right to know.

He was reminded, he said, of the correct approach to syphilis, according to which a man diagnosed with the disease was required to inform the medical authorities of the names and addresses of all his sexual partners, who were in turn traced, notified, required to reveal their sexual histories, admonished and treated. HIV and Aids should be handled in a similar manner.
Simelela made several attempts to reply to Motlana’s points, but was so repeatedly interrupted by him that the audience became visibly restive. One trade unionist murmured, “that old man is out of order.” While attempting to pacify Motlana and when she could get a word in edgeways, Simelela raised her final argument against any form of notification of HIV positivity: it seems unethical to tell people when little or nothing can be done for those infected.
Eventually, while exhibiting the greatest respect for his age and eminence and by indicating where she agreed with him (at least in principle), Simelela was able to regain control of the meeting. “Chief” as she called Motlana, was eventually pacified and left soon after. Apart from providing a brief but intriguing glimpse at some of the tensions concerning age and gender among the African upper-middle class, this incident also dramatised and personalised the difficulties which surround the issue of Aids notification. The Motlana-Simelela dispute reflects a much wider and deeper set of disagreements about Aids notification and Aids policy in general.

At present dysentery, typhoid, tuberculosis, diphtheria, meningitis, bubonic plague, cholera and Ebola-type fevers are all notifiable diseases in South Africa. The virulent form of dysentery known as shigella killed at least three children in Cape Town’s Gugulethu township in mid-July. In such situations doctors are required to inform the public health authorities immediately on diagnosing the first cases. This triggers a chain of administrative action (quarantines, mass disinfections etc) that, if carried out quickly and efficiently, can save many lives.

HIV infection and Aids are not at all like dysentery or cholera, which are highly contagious and have fairly brief latency periods between infection and showing symptoms. The human immuno-deficiency virus itself is not particularly contagious. Once infected it takes on average seven years for the virus to wear the victim’s immune system down to the point where he or she stops feeling perfectly well and starts exhibiting Aids symptoms. This incontrovertible medical fact makes Zuma’s intention to declare Aids a notifiable disease impossible to understand except in political terms.

As the health department’s own educational material reiterates, HIV infection can generally be avoided simply by using condoms. It is important not to be too glib about this: many South African women are not free to avoid risky sex, and rape victims, babies infected in the womb, medical staff badly cut during operations, and the rare recipients of contaminated blood transfusions should never be forgotten.

The data gathered from doctors would tell the health bureaucrats only what they already know. As Aids expert Professor Brian Williams of the Centre for Scientific and Industrial Reasearch exclaims in exasperation, graphs and projections in hand, “We have known exactly what is going to happen for the last five years.”

South Africa already has two reliable sources of information on current HIV infection rates and hence, future Aids trends. Women attending ante-natal clinics are routinely tested for HIV infection. This provides a broad statistical base with which to work. Of course, the raw data is biased — everyone tested is, by definition, female, sexually active and fertile, but this can be corrected using data gathered from “sentinel sites”, communities in which detailed questionnaire and clinical research is undertaken over a period of years. Sentinel site testing is performed in towns and hospitals across South Africa, the best-known being the West Rand mining town of Carletonville and Hlabisa, in rural KwaZulu-Natal.
If any statistical gaps need to be filled, it is far easier, simpler and cheaper to set up another sentinel site, or to modify questionnaires than it would be to create a national notification system for Aids. In fact there are sound reasons to believe that making the presence of HIV infection or Aids itself notifiable will provide the health department with false reassurance.

Writing in the South African Medical Journal in February, Dr Mark Colvin reports that doctors’ experience of using notification data to attempt to get to the truth about the incidence of a disease has been “dismal”. The country’s leading notification expert, Dr Salim Abdool Karim of the Medical Research Council, has established that seven times more people in South Africa have Hepatitis B than the notification data suggests. There are twelve times more cases of syphilis in Johannesburg than are notified. If the notification figures are to be believed, tuberculosis cases in KwaZulu-Natal have declined 40 per cent in the last four years — a most satisfactory headline. The Hlabisa sentinel site suggests, by contrast, that there has been a 278 per cent increase in the incidence of TB. If statistics derived from notification were used to plan for TB care, enormous human suffering would result. In the case of Aids, the inaccuracy would be even greater.

The international experience strongly suggests the existence of a widespread tendency to avoid Aids testing and care when the disease is made notifiable. A decade ago, most western countries adopted forms of Aids notification. In Sweden, that paragon of public and private tolerance, the policy resulted in a 30 per cent drop in attendance at clinics where HIV testing was done. In Illinois, the decline was 22 per cent. A somewhat larger drop than in Stockholm or Chicago seems inevitable in Soweto.

The stigma of Aids cannot be underestimated. Two out of three HIV positive South Africans are women; Their husbands and boyfriends are notoriously among the most violent — and sexually hypocritical — in the world. A sense of the views held by far too many South African men may be gathered from one of the men interviewed about sexual morality by the Saturday Star in May. Asked why he did not use condoms when having sex with either his wife or his girlfriend, he explained that, “I am a man. Men can do this. If a woman sleeps around, she is a bitch.” Although Williams argues that such attitudes are probably less common than press reports suggest, he or any other Aids expert will confirm that many women fear being forced to reveal their HIV status to their men.

Take Joyce Malope, whose story was first told in the Sunday Independent in November last year. She is 27. Three years ago, she was abducted and raped. She contracted HIV from the rapist. Her husband, on being told this news, abandoned her and her two children. So great was her shame that she tried to burn herself to death. It was only on being admitted to hospital as a result of her suicide attempt that she received any Aids counselling. She became an Aids councillor herself.

An Aids hospice built with community help and business support near Richards Bay was opened with considerable local fanfare, but for months, nobody at all came. The managers then removed the word Aids from the name of hospice and admitted some elderly stroke victims. From that day onwards, its beds have been full of people dying of Aids.

Zuma’s additional claim that the data gathered from Aids notification would enable the department of health to plan and budget for Aids patients’ specific needs is also almost entirely implausible. There is not much mystery about which opportunistic infections batten on to people whose immune systems HIV has destroyed. In South Africa, the most common is tuberculosis. The others are also well-known and fall into two categories: incurable, like brain tumours, or capable of being controlled, like candidiasis. What is needed are painkillers and antibiotics.

The demands that notification would place on the already overstretched hospital doctors and nurses in rural primary health care would be enormous. Some 1,500 people are found to be HIV positive in South Africa every day. That is a lot of forms. Officially notifying caregivers and family that a person is dying of Aids would usually amount to no more than a rather cruel turn of the screw for both patient and family. In too many cases, the family or husband’s reaction would be violent anger directed against patient and doctor rather than just sorrow and a sense of humiliation. Little is gained and much lost in the way of humanity from someone in a white coat being obliged by the state ritually to hammer home what is all too obvious.

Ruling out notification in South Africa now does not mean it should not be introduced at some future date. In most developed countries HIV notification has come back into favour in the last few years. In Australia, in many states of the US and the European Union, systems of named notification and even partner tracing now operate with, generally speaking, the complete acceptance of HIV positive people and Aids workers. The most obvious reason for this change is the wide availability in the rich world of effective anti-HIV drugs, which have transformed HIV/Aids from an invariably fatal disease into a serious, but manageable, chronic condition. Better-off South Africans benefit too.

By contrast, as Newsweek discovered, Nigel Hoffman of the Rietvlei Hospital in the Eastern Cape has decided not even to tell his underprivileged patients of the existence of these drugs — which knowledge would just make their last months even more painful.

But there is more to the rich world’s return to notification than this advance in medical technology. Social attitudes in those countries have come a long way since the “gay plague” terror of the 1980s. Legislation is in place — for example, the Americans with Disabilities Act — that outlaws discrimination against those who are HIV positive. More importantly, social attitudes have become increasingly tolerant of them. This is the result of aggressive education campaigns, but it is also a matter of statistics. In the rich world, HIV/Aids is no longer spreading rapidly, but has been around long enough to cease causing hysteria. It is just one of life’s more unpleasant features. South Africa cannot expect to be in this comparatively fortunate situation for decades.

Zuma’s instinct to “get something done” in a dramatic way is surely right, but there are measures other than notification with which to provide the anti-Aids campaign with energy, direction and real hope. One, already often suggested by Aids workers and politicians, is to encourage and reward high-profile declarations of HIV positivity. Perhaps agreeing to a confidential HIV test should be accompanied by a straight cash reward or, as Simelela thinks, consideration for a disability grant. Perhaps an obligation to pass a written test on Aids awareness should be a requirement for all school-leavers, or should accompany the eye-test that goes with getting a drivers’ licence or having it renewed. Perhaps, as Williams suggests, prostitution should be completely legalised and very thoroughly regulated.

Moves in these directions would let dispirited Aids workers know that they have real political support in sharp contrast to the drift and diversions of the past five years. At the moment, notification of any sort is not something on which South Africa should waste time and money, but getting the country into a situation where useful HIV/Aids notification would become possible is a very worthy goal.