“Opt-out” testing for HIV in Africa: a caution

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Access to antiretrovirals: where South Africa, China, and Brazil meet Sir—Adele Baleta’s News item (Nov 29, p 1811),1 addresses the South African government’s stated plan to distribute antiretrovirals to all who need them. This resolution is cause for praise. China also recently announced an initiative to distribute antiretrovirals. An editorial in The New York Times2 recognised both measures, but accurately cautioned that the existence of local networks that struggle for access to treatment—such as are relatively well developed in South Africa and include prominent activists such as Zackie Achmat and his colleagues—could be crucial for the success of such initiatives. China has yet to allow the space within which civil society can mobilise effectively against the epidemic. The experience of a third country, Brazil, could have special relevance. The Brazilian response—which has been acclaimed for its success, especially in provision of treatment— arose from the governmental sector and from the active participation of civil society, including organisations of people living with HIV/AIDS.3 But the denial of the rights of such people also has a place within the history of the epidemic in Brazil—that which Herbert Daniel, a Brazilian activist, once denounced as “civil death”.4 It is worth remembering that when the first cases of AIDS arose in Brazil, in the 1980s, the country was emerging from a military dictatorship of nearly 20 years.5 In this sense, the process of democratisation of the country was accompanied by the construction of a national response to AIDS. Observing the South African and Chinese responses to the HIV/AIDS epidemic, as well as the Brazilian process of achieving a national response to AIDS, it is evident that the struggle for health rights can be transformative and that the participation of civil society and the respect for human rights are crucial elements in the fight against AIDS. Jane Galvão Institute for Global Health, University of California, San Francisco, CA 94105, USA (e-mail: [email protected]) 1

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Baleta A. South Africa approves plan for universal access to antiretrovirals. Lancet 2003; 362: 1811. Editorial. Two nations fight AIDS. The New York Times Nov 23, 2003: 10. Galvão J. AIDS no Brasil: A agenda de construção de uma epidemia. Rio de Janeiro: Associação Brasileira Interdisciplinar de AIDS/Editora 34, 2000.

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Daniel H. Vida antes da morte/Life before death. Rio de Janeiro: Tipografia Jaboti, 1989. Teixeira PR, Vitória MAA, Barcarolo J. The Brazilian experience in providing universal access to antiretroviral therapy. In: Moatti J-P, Coriat B, Souteyrand Y, Barnett T, Dumoulin J, Flori Y-A, eds. Economics of AIDS and access to HIV/ AIDS care in developing countries: issues and challenges. Paris: ANRS, 2003: 69–88.

HAART in India Sir—We were disappointed to read Dinesh Sharma’s report (Dec 13, p 1988)1 labelling the Indian government’s decision to supply free highlyactive antiretroviral therapy (HAART) for patients from the six most affected states as “premature and potentially dangerous”. We believe that much of the criticism was unfair. Antiretroviral therapy has greatly improved the prognosis of patients with HIV-1 infection.2 Physicians’ supposed lack of awareness and the “weak health system” is no reason why patients must be denied this ground-breaking treatment. Physicians’ experience with comprehensive care and HAART will only evolve once they are provided with an opportunity to access the requisite drugs. Years ago, the arrival of directlyobserved therapy (DOTS) for tuberculosis was met with much scepticism. However, laying down treatment guidelines and enlisting the support of medical-college faculty has been a huge success in India.3 Education in medical schools and strict guidelines will help physicians to prescribe HAART appropriately, and this must be offered as a part of comprehensive care. Similar to the DOTS drive, India must initiate training programmes to a select group of physicians. The right to prescribe HAART must be restricted to physicians who have undergone specialised training. One of the most crucial problems in tackling HIV-1 in India is the social stigma.4 Treatment can help disseminate information that this illness is treatable. If government hospitals have something substantial to offer, more patients will come out into the open for treatment. With the spread of news regarding the availability of effective drugs and the sight of patients improving, there will be a shift in the public perception that the disease follows a uniformly inexorable course. The spread of this information, coupled with extensive public education, can eliminate prejudice. There is no merit to the argument that HAART should not be introduced in countries with limited health infrastructure. The success of the

DOT-HAART project in Haiti, a resource poor country, is a case in point.5 It is an indisputable fact that the present union health minister has injected some dynamism into what was once considered a low-key ministerial post. She has lobbied with the Confederation of Indian Industry to increase availability of facilities to estimate CD4 counts and viral RNA load. Her high-profile support of the AIDS campaign has elicited widespread media coverage and will certainly help attract desperately needed funds. Criticism of government decisions is always fashionable, but a progressive decision such as this, which comes once in a while, must be given the accolade it deserves. *Binu V John, S Thomas Department of Medicine 2, Christian Medical College and Hospital, Vellore, Tamilnadu 632004, India (e-mail: [email protected]) 1

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Sharma DC. India unprepared for antiretroviral treatment plan. Lancet 2003; 362: 1988. Mocroft A, Vella S, Benfield TL, et al. Changing patterns of mortality across Europe in patients with human immunodeficiency virus infection. Lancet 1998; 352: 1725–30. Granich R, Chauhan LS. Status report of the Revised National Tuberculosis Control Programme: January 2003. J Indian Med Assoc 2003; 101: 150–56. Anon. AIDS stigma forms an insidious barrier to prevention/care: HIV experts describe problem in India. Aids Alert 2002; 17: 111–13. Farmer P, Léandre F, Mukherjee JS, et al. Community-based approaches to HIV treatment in resource-poor settings. Lancet 2001; 358: 404–09.

“Opt-out” testing for HIV in Africa: a caution Sir—The call by Kevin De Cock and colleagues (Nov 29, p 1847)1 for more widespread HIV testing inspires respect for their dedication to seeking optimum use of public-health tools in the urgent fight against the HIV/AIDS epidemic. De Cock and colleagues argue that use of “opt-out” testing—whereby HIV testing is routine unless the person to be tested explicitly refuses the test— conforms to human rights principles such as the right to privacy and personal autonomy, and makes the unassailable assertion that universal voluntary knowledge of HIV serostatus is a vital HIV prevention goal. The challenge is to ensure that this goal is realised with fairness. In reality, opt-out HIV testing in Africa and Asia, at least at first, would necessarily be administered more frequently to women and girls than to

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men and boys, since women and girls are more likely to come into contact with formal health services—antenatal care services most obviously—than do men and boys. Women and girls in Africa (and beyond) have faced horrific violence and abuse when they have been known or suspected to be HIV positive.2 We urge therefore that if governments choose to implement opt-out HIV testing, this policy should have as a central element well funded measures for protection of HIV-positive women and girls from abuse. These include short term measures such as emergency help-lines, safe shelters for battered women, and training of police and social service providers on AIDS-related violence against women, and longerterm efforts such as ensuring effective prosecution of perpetrators of sexual violence, reform of legislation to criminalise marital rape, and schoolbased awareness programmes for girls and boys. In an earlier article,3 De Cock and colleagues recognised that some women refuse HIV testing because of “stigma, discrimination, and potential consequences such as domestic violence, abandonment, or murder”, but note that the frequency of these events is uncertain. Indeed, the frequency of domestic violence in particular will always be uncertain since it is a hidden crime and is aggressively prosecuted in very few places. But our work and that of other investigators indicate that women frequently face spousal violence when they reveal that they are HIV positive or even show interest in learning their status or obtaining care.4 Such violence is deeply rooted and underpinned in many societies by inequitable laws on property, inheritance, and divorce that keep women economically dependent on their spouses and limit their choices in leaving dangerous unions.5 To trivialise or minimise HIV/AIDS-linked violence and abuse against women only risks perpetuating this abuse and also the stigma associated with AIDS, which is itself a major impediment to fighting the epidemic. In both their articles, De Cock and colleagues suggest that the main human rights concerns associated with HIV/AIDS are to protect informed consent and the confidentiality of HIV testing and status. Yet the concept of human rights goes far deeper than this. AIDS-related human rights concerns encompass subordination of women and girls, stigma and discrimination faced by people living with HIV/AIDS and those at high risk, the right of all people to HIV/AIDS information and services, and the right to health of newborn children. Informed consent and

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confidentiality are linked to all these other rights, particularly in settings where HIV/AIDS still carries a deep stigma, and should not be considered in isolation. De Cock and colleagues’ call for a new strategy for the use of the publichealth tool of HIV testing merits a wider discussion. To be most effective, this discussion should include representatives of women’s rights organisations and organisations of people with HIV/AIDS, whose voices have too often been excluded from the making of decisions that affect them first and foremost. *Joanne Csete, Rebecca Schleifer, Jonathan Cohen HIV/AIDS and Human Rights Programme, Human Rights Watch, 350 Fifth Avenue—34th Floor, New York, NY 10118, USA (e-mail: [email protected]) 1

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De Cock KM, Marum E, Mbori-Ngacha D. A serostatus-based approach to HIV/AIDS prevention and care in Africa. Lancet 2003; 362: 1847–49. Human Rights Watch. Just die quietly: domestic violence and women’s vulnerability to HIV in Uganda. New York: HRW Reports, 2003: 27–31. De Cock KM, Mbori-Ngacha D, Marum E. Shadow on the continent: public health and HIV/AIDS in Africa in the 21st century. Lancet 2002; 360: 67–72. Maman S, Mbwambo JK, Hogan NM, et al. HIV-positive women report more lifetime partner violence: findings from a voluntary counseling and testing clinic in Dar es Salaam, Tanzania. Am J Public Health 2002; 92: 1331–37. Human Rights Watch. Double standards: women’s property rights violations in Kenya. New York: HRW Reports, 2003.

Chirwa’s son Sir—Chirwa’s son was ill in hospital with pneumonia, so we had promised to pass by and see how he was getting on. “It’s probably AIDS”, said my brother as soon as we were out of earshot. He has been a surgeon in Africa for years and knows more of such matters, but we were little prepared for the scene we were to encounter in the hospital. Mangochi used to be an important town. Known as Fort Johnson in colonial Nyasaland, it defended the start of the Shire river which drains Lake Malawi into the Zambezi. To my knowledge, no invading force ever came up the Zambezi to invade Nyasaland; aside from the difficulty of negotiating several sets of vicious rapids for which Livingstone and the early explorers had to dismantle their boats and carry them around, there was never anything worth taking and still isn’t. So the country has been left mostly to itself by the empire-backed

merchants who stripped most of Africa of its valuables during the past century. The hospital is new—built of separate pavilions, woven together by long open corridors, and set in ample gardens of dry sand dotted with an occasional sorry-looking jacaranda tree. In the spotlessly clean male medical ward, 40 rusty steel bunks stood in neat rows, a few still covered by the ragged remnants of a foam mattress, most with only a blanket or thin bamboo mat directly on the springs. All seemed occupied by emaciated young men, as was the floor under each bed, and sometimes the space between them. AIDS has displaced all other medical problems in central Africa, and in many hospitals over 90% of adult patients are in various stages of the disease, complicated by every other illness imaginable. Chirwa’s son was lying in the fourth bay on the left, one bed away from the window. Expecting to find a patient with pneumonia, perhaps already on the road to recovery, we were confronted by the withered ghost of an old man, weighing perhaps 35 kg, and drawing shallow breaths, interspaced by almost interminable apnoeas. Next to the bed sat his wife, a still plump girl who looked considerably younger than her husband, breastfeeding their 6-month-old child. The most extraordinary aspect of the whole scene was the utter calm and resignation on the face of the young wife as she sat quietly contemplating the inevitable death of her husband, and consequently the almost certain end of her own life and that of their child. There was no trace of suffering in her face, just an expression of extraordinarily serene resignation; of the acceptance that this was part of life and it could not be otherwise. There is ample evidence that this state of calm is an artifice, carefully maintained for the benefit of the patient, who is enveloped in a cocoon of emotional peace. There must be no room here for nervous speculation, for worries, discussions, and tears: all these will distract him from the arduous task of staying alive. His last strength must be concentrated on fighting the illness which medical science is impotent to solve. Chirwa’s son, whose name I have concealed from my memories, was perhaps slightly over 20 years old when he died the next day. Johannes Borgstein University Hospital Rotterdam, 3015 GD Rotterdam, Netherlands (e-mail: [email protected])

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