| Debates | |||
| Pros and cons of the PPTCT programme | |||
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The programme to prevent mother to child transmission of HIV is supposed to reduce the chances of perinatal transmission by giving HIV positive pregnant women a short course of an antiretroviral drug. Mariette Correa points out limitations in the programme and also raises some ethical issues |
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Of the 27 million women who give birth every year, an estimated 92,000 have HIV. Between 13 and 60 per cent of the children born to them will have HIV. One of the earliest HIV-related medical interventions in India was to reduce maternal-foetal transmission of HIV, using a short course of the antiretroviral drug Niverapine which has been shown to reduce vertical transmission significantly, though it is not as effective as the longer AZT course used in developed countries. Following a feasibility study in 2000-2001, the Prevention of Parent To Child Transmission (PPTCT) programme was initiated in January 2003. Since then, the National Aids Control Organisation (NACO) has been scaling up the PPTCT programme (previously called the Prevention of Mother-to-Child Transmission Programme, the name change is apparently an attempt to involve the husbands) to cover all medical colleges and districts in high HIV prevalence states. Programme’s reach In the 18 months from January 2003 to June 2004, 1.01 million women were registered in PPTCT centres all over India – less than four per cent of the women needing antenatal care. Another 105,000 arrived directly for labour without antenatal care. About 800,000 women were tested and 9,650 were found positive in antenatal clinics. Another 91,000 who came for labour directly were tested and 1,740 were found positive. A total of 5,643 positive women gave birth and just 4,771 received Niverapine along with their children. In other words, the PPTCT programme reaches a fraction of those needing it. While it is assumed that the PPTCT programme will eventually increase its reach, it will still have to contend with the fact that women have poor access to health care including pre-natal care. There is no evidence that women’s access to health care will improve. Questions about the drug regimen While certain elements of the feasibility study on PPTCT were challenged on grounds of ethics, additional aspects of the Niverapine programme deserve further discussion. First, giving the mother Niverapine rules out its use for her own treatment later on. Second, earlier reports of Niverapine toxicity have been revived in recent weeks. There is also the question of breast-feeding – while HIV positive women in the programme are given information on the risks and benefits of breast-feeding, it is not clear what is done for those who would like to choose not to breast-feed. Is testing voluntary? In the expanding number of PPTCT sites, testing and counselling are not only extended to all pregnant women (irrespective of any risks of acquiring the virus), but also to women who have very little choice to refuse. This is despite the fact that according to NACO, “voluntary counselling and testing is a critical component of any PMTCT programme”. It is well known that even prior to the PPTCT programme, pregnant women were being routinely tested in many government and private hospitals. In the former, additional precautions (often at the women’s expense) would be taken if they were found to be HIV-positive. In the latter, positive women would be referred to a government hospital often on some pretext and without informing her of her HIV status. In either case, women had no real choice to refuse HIV testing. At that time, the Voluntary Confidential Counselling and Testing Centres or VCCTCs (which did the counselling) were essentially places where women were given some information on HIV/AIDS and ‘motivated’ to be tested if they were reluctant. Incidents of doctors refusing to deliver pregnant women who did not get the test done are not uncommon. With the PPTCT programme, women have even less of a choice. Models in use are called by various names, “opt-in” and “opt-out”, “shared confidentiality”, “couple counselling” or the more recent “routine HIV testing.” Under the opt-in approach, women typically are provided pre-HIV test counselling and must consent specifically to an HIV-antibody test. Under the opt-out approach, women are notified that an HIV test will be included in a standard battery of prenatal tests and procedures, and that they can refuse testing. The rhetoric of the various models obfuscates a key concern, viz is HIV testing being routinely offered or is it being routinely imposed, and do people have genuine and informed choices to ‘opt-out’ of tests? In the Indian context, where women from the poorer sections are those that access government services (in which the PPTCT programmes are located), a pregnant woman who is dependent on this service until her delivery may not realistically be expected to refuse to follow the doctor’s advice for fear that the other services she is dependent on will be withdrawn. In there ‘beneficial disclosure’? The PPTCT programme also brings the issue of disclosure to partners into sharper focus. As per a Supreme Court decision of 1998, and the subsequent order of the Government of India, which encourages disclosure to sexual partners, “…it is imperative for the attending physician to disclose HIV status of the infected partner/ spouse to other sexual partner or spouse after proper counselling” (GOI, Ministry of Health & Family Welfare. 2000). In VCCTCs, where people do not want to disclose their status to their partners, they merely do not return to the VCCTCs. There is no meaningful or feasible way to trace them, nor is it expected. In the PPTCT situation, however, a woman has no choice but to disclose her status to her husband if she desires to continue accessing health care at the site. Under the guise of ‘beneficial disclosure’, she now has to reveal her HIV-positive status to her husband, irrespective of the implications to her health and safety. In the PPTCT programme, women are usually tested first and, if they test positive, their husbands are called in for testing. With the sexual route to getting AIDS deeply ingrained in the public psyche, these HIV-positive women are assumed to have been promiscuous. Even in cases where the husband later tests positive, since the woman is tested first, she is often seen as responsible for bringing the infection into the household. Her ‘faithfulness’ to her husband is questioned. Given the discrimination that HIV-positive women in India are subjected to, this programme could inadvertently further victimise them. Positive people’s networks and the media have highlighted issues of discrimination against HIV-positive women. This includes being thrown out of her matrimonial home in her pregnant state, denial of property and inheritance, refusal to be taken back into her parental home, and in extreme cases, stoned or burnt alive. Pregnant women and ARV While the pressure on pregnant women to get tested continues, the debate surrounding their access to antiretrovirals (ARV) remains unresolved. The government, in its wisdom, has a certain rationale for not providing ARV free of cost under the PPTCT programme (except to prevent transmission to the baby). NACO believes that this would “likely lead to sharing of antiretroviral drugs in HIV concordant couple-setting, may lead to power play for actual intake of these drugs in family setting and also require a huge budgetary allocation. Selective approach may also be seen as a discriminatory approach and may prove counterproductive through creation of indifference towards HIV prevention programmatic strategies among males and sometimes may force women to become pregnant to receive these otherwise unaffordable drugs for them.” In a programme which puts women in a situation where they are ‘routinely’ tested, stigmatised due to their ‘sexual behaviours’ if found positive, and have no resources to fall back on, they are being further deprived of life-saving drugs. PPTCT centres are expected to provide information to the pregnant woman about various reproductive health related issues, reproductive tract infections, safe sex practices, infant feeding practices and nutrition. We are expecting pregnant HIV-positive women to grasp and deal with all this information when they already have to deal with their positive status and its associated stigma, the resentment and anger towards their husbands, the blame to which they are subjected at home, the lack of choices that they have, the fear of losing their baby, their matrimonial home, and their dignity. Most of these attitudes are related to the fact that HIV/AIDS is assumed to be through the sexual route. Would not the provision of accurate information about other possible risks factors help to reduce the stigma and its fallout? End notes (Mariette Correa is an independent consultant who has been involved in HIV/AIDS programming for NGOs in Goa and South Asia) Infochange News & Features, February 2008 |
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