From pmtct to a more comprehensive aids response for women: a much-needed shift

Developing World Bioethics ISSN 1471-8731 (print); 1471-8847 (online) FROM PMTCT TO A MORE COMPREHENSIVE AIDS RESPONSE FOR
WOMEN: A MUCH-NEEDED SHIFT
CYNTHIA EYAKUZE, DEBRA A. JONES, ANN M. STARRS AND NAOMI SORKIN Keywords
PMTCT,
ABSTRACT
Half of the 33.2 million people living with HIV today are women. Yet, responses to the epidemic are not adequately meeting the needs of women. This article critically evaluates how prevention of mother-to- child transmission (PMTCT) programs, the principal framework under which women’s health is currently addressed in the global response to AIDS, have tended to focus on the prevention of HIVtransmission from HIV-positive women to their infants. This paperconcludes that more than ten years after their inception, PMTCTprograms still do not successfully ensure the adequate treatment,care and support of HIV-infected women. Of particular concern is thecontinued widespread use of single-dose nevirapine despite WorldHealth Organization recommendations to employ more effectivecombination therapies that do not potentially jeopardize women’sfuture treatment outcomes. In response, the article calls for a morecomprehensive approach that places women’s health needs at thecentre of AIDS responses. This is critical in settings where thepandemic is generalized and there is a push to greatly expandPMTCT programs, as a more effective and equitable way of meetingthe needs of women in the context of HIV. Without such a compre-hensive approach, women will continue to be impacted dispropor-tionately by the pandemic, and current strategies for prevention,including PMTCT, and treatment will not be as effective and respon-sive as they need to be. INTRODUCTION
prevention of mother-to-child transmission and,most recently, routine testing.1 The intersection of The AIDS pandemic is challenging societies, andhealth systems in particular, in myriad ways; many 1 P. de Zuleta. Randomised Placebo-controlled Trials and HIV- of these challenges involve significant ethical dilem- infected Pregnant Women in Developing Countries: Ethical Imperial- mas. Various ethical issues relating to HIV preven- ism or Unethical Exploitation? Bioethics 2001; 15: 289–311; S. Rennie &F. Behets. 2006. Desperately Seeking Targets: The Ethics of Routine tion, testing and treatment have been discussed in Testing in Low-income Countries. Bull World Health Org 2006; 84: published literature, including placebo trials for the Address for correspondence: Cynthia Eyakuze, MA, MPH, Director of the Public Health Watch Project of the Public Health Program at the OpenSociety Institute, New York, NY, USA. 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.
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maternal health with HIV and AIDS, however, needs of the pregnant woman have in practice remains neglected in many respects, including a become secondary to the overall goal of reducing number of profound ethical questions provoked by transmission to the infant. Secondly, the article will current practices in HIV and maternal and repro- argue for a more comprehensive approach that places women’s health needs at the centre of AIDS Issues related to equity in access to and utilisation responses, particularly in settings where the pan- of health services are inherently related to the demic is generalized and there is a push for greatly general pursuit of social justice.2 As historian Allan expanding PMTCT programs, as a more effective Brandt predicted 20 years ago, AIDS is the standard and equitable way of meeting the needs of women in by which we may measure not only our medical and scientific skill but also our capacity for justice andcompassion.3 With the feminisation of the AIDSpandemic, it is appropriate, indeed essential, to ask WOMEN AND AIDS
whether efforts to address the pandemic meet theneeds of women.
Almost half of the 33.2 million people living with This article argues that the current response to the HIV are women (15.4 million).5 In sub-Saharan needs of women in the era of AIDS remains inad- Africa, where two-thirds (22.5 million) of all those equate, and that the prevention of mother-to-child living with the virus reside, the majority (61%) are transmission (PMTCT) strategy, which is the prin- women.6 The disproportionate impact of AIDS on cipal framework under which women are most able women has been widely documented and will not be to access HIV services, reinforces and at times exac- reviewed again here. What has been less docu- erbates the larger challenges they face in accessing mented and examined, however, despite the empha- much-needed sexual and reproductive health ser- sis on PMTCT, is the intersection between maternal vices, including maternal care. As such, the PMTCT framework requires a shift to ensure that women’srights and needs, as defined by and enshrined inseveral global agreements,4 are more appropriately MATERNAL HEALTH AND AIDS
The article will first examine ethical questions Approximately 529,000 maternal deaths7 occur each relating to the implementation of the PMTCT strat- year, 99% of which occur in developing countries.8 It egy, which is the main entry for HIV-positive is estimated that HIV-positive pregnant women are women to access HIV treatment and services. The at 1.5–2 times greater risk of maternal mortality.9 article argues that while comprehensive in scope, the Indeed, in settings such as southern Africa, where actual implementation of PMTCT strategies hasplaced overwhelming emphasis on one out of four 5 World Health Organization (WHO)/Joint United Nations Pro- components – the use of antiretroviral therapy to gramme on HIV/AIDS (UNAIDS). 2007. AIDS Epidemic Update.
Geneva: WHO/UNAIDS. Available at: prevent transmission – such that the rights and EPISlides/2007/2007_epiupdate_en.pdf [Accessed 1 Dec 2007].
6 Ibid.
2 F. Peter & T. Evans. 2001. Ethical Dimensions of Health Equity. In 7 A maternal death is defined by the World Health Organization as the Challenging Inequities in Health. T. Evans et al., eds. New York, NY: death of a woman while pregnant or within 42 days of the termination of pregnancy, irrespective of the duration and site of the pregnancy, 3 A. Brandt. 1988. AIDS: From Social History to Social Policy. In from any cause related to or aggravated by the pregnancy or its man- AIDS: The Burdens of History. E. Fee & D.M. Fox, eds. Berkeley, CA: agement, but not from accidental or incidental causes. See World University of California Press: 147–171.
Health Organization (WHO). 2004. Maternal Mortality in 2000: Esti- 4 United Nations. International Conference on Population and Devel- mates Developed by WHO, UNICEF and UNFPA. Geneva: WHO.
opment (ICPD). 1994. Programme of Action of the International Con- ference on Population and Development, Cairo 1994. New York, NY: maternal_mortality_2000/challenge.html [Accessed 12 July 2007].
ICPD; United Nations. Division for the Advancement of Women 8 C. Ronsman & W.J. Graham. Maternal Mortality: Who, When, (DAW). Fourth World Conference on Women, Beijing 1995. Action for Where and Why. Lancet 2006; 368: 1189–1200.
Equality, Development and Peace: Platform for Action. New York, NY: 9 J. McIntyre. Mothers Infected with HIV: Reducing Maternal Death and Disability During Pregnancy. Br Med Bull 2003; 67: 127–135.
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From PMTCT to a More Comprehensive AIDS Response for Women
HIV prevalence is as high as 40%, AIDS has become both the maternal health and the HIV communities the leading cause of maternal mortality.10 Evidence continue to pay inadequate attention to the associa- also indicates that HIV-negative women are at tions between maternal mortality and HIV and greater risk of HIV infection during pregnancy, for AIDS, as well as the particular needs of HIV- physiological, not behavioural, reasons that are not positive pregnant women. A recent review of more than 2250 published studies on maternal mortality Since the launch of the Safe Motherhood Initia- globally from 2000 to 2007 found only 127 articles tive (SMI)12 in 1987, several countries have been addressing AIDS as an indirect cause of maternal able to reduce maternal mortality through mid- death.16 Research was limited to the cultural and wifery care and hospital care at birth, the control of political determinants of maternal mortality, high- infectious diseases, and the liberalisation of abor- lighting the need to better understand the critical tion laws.13 In the majority of countries, however – underlying risk factors for maternal mortality and especially in sub-Saharan Africa, where the risk of morbidity. With the evidence of the increased risk of maternal death is highest – maternal mortality con- maternal mortality among HIV-positive pregnant tinues to be an enormous public health problem, women, this inattention becomes even more unac- with one out of every 16 women likely to die from the complications of pregnancy and childbirth. Inthis context, the millennium development goal14 ofreducing maternal mortality by 75% between 1990 EFFORTS TO REDUCE MATERNAL
MORTALITY
The AIDS pandemic makes the goal of reducing maternal mortality even more elusive unless the Prior to the launching of the global SMI, maternal maternal health and AIDS fields develop joint health was in theory addressed within maternal and strategies for action. Yet, despite repeated calls,15 child health (MCH) programs. Yet, in reality, mostof these programs focused more on the health out- 10 J McIntyre. Maternal Health and HIV. Reprod Health Matters 2004; comes of the child than the woman.17 One of the major successes of the SMI was to highlight the 11 R.H. Gray et al. Increased Risk of Incident HIV During Pregnancy woman’s right to health in and of itself and not in Rakai, Uganda: A Prospective Study. Lancet 2005; 366: 1182–1188.
12 World Health Organization/United Nations Population Fund/ simply to address her health as a means to produc- United Nations Children’s Fund/World Bank. 1987. Safe Motherhood ing a healthy infant. The sexual and reproductive Initiative. Launched at a joint conference in Nairobi, 1987. For infor- rights of women, including the right to safe mation, see RHO Archives. 2005. Overview and Lessons Learned.
Online: RHO Archives. Available at: pregnancy and delivery, have been established overview.htm [Accessed 24 Jan 2008].
and widely accepted by the global community.18 13 A.M. Starrs. Safe Motherhood Initiative: 20 Years and Counting.
However, fulfilling these rights for the majority of Lancet 2006; 368: 1130–1132. Available at: women in the world is an ongoing challenge, with org/UserFiles/File/safe%20motherhood%2020%20yrs%20and%20counting.pdf [Accessed 24 Jan 2008].
the feminized AIDS pandemic bringing many of 14 See United Nations (UN). UN Millenium Development Goals. Online: Specifically, in the era of the AIDS pandemic, Jan 2008].
15 W. Graham & J. Hussein. 2003. Measuring and Estimating Maternal research, articles and strategies continue disappoint- Mortality in the Era of HIV/AIDS. Workshop on HIV/AIDS and Adult ingly to focus more on infant/child health than Mortality in Developing Countries. Population Division, Department of maternal health. For example, a search on Medline Economic and Social Affairs, United Nations Secretariat. New York,NY: United Nations. Available at: publications/adultmort/GRAHAM_Paper8.pdf 16 D. Gil-Gonzalez, M. Carrasco-Portiño & M.T. Ruiz. Knowledge 2007]; Health & Development Networks (HDN), United Nations Devel- Gaps in Scientific Literature on Maternal Mortality: A Systematic opment Fund for Women (UNIFEM) & International AIDS Society’s Review. Bull World Health Org 2006; 84: 841–920.
Women’s Caucus. 2002. Women at Barcelona (W@B) Final Summary: 17 A. Rosenfield & D. Maine. Maternal Mortality – A Neglected W@B post-conference postings and discussion summaries. Chiang Mai: Tragedy. Where is the M in MCH?’ Lancet 1985; 2: 83–85.
18 United Nations. International Conference on Population and Devel- Women_at_Barcelona.pdf [Accessed 2 July 2007].
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revealed that from 1993 to 2003 only 43 papers were capacity than her own individual wellbeing. As far published with ‘maternal mortality’ and ‘HIV/ back as 2001, questions were raised about the exclu- AIDS’ as keywords, compared to 6200 published sive focus on preventing transmission of HIV to the papers on child mortality and HIV/AIDS.19 infant and inadequate attention to the pregnant In both developing and developed world settings, woman’s health.20 In 2006, WHO revised the women’s reproductive choices are limited by a range PMTCT guidelines to better address the health of factors, many relating to gender inequalities. An needs of pregnant women by, among other things, equally diverse set of determinants influence when, placing greater emphasis on the treatment of the where, how and why many pregnancies occur. These woman.21 However, given that less than 10% of factors are mediated by the availability, quality HIV-positive pregnant women needing PMTCT ser- and accessibility of reproductive health services, in- vices currently receive them, it is clear that these cluding contraception; pregnancy termination; STI revised guidelines are not being implemented.22 detection and treatment; HIV prevention, testing PMTCT interventions in most developing coun- and treatment; and maternity care (antenatal, deliv- tries are guided by utilitarian principles that ascribe ery, and postpartum). Actual practices during the women the societal roles of vessel and caretaker.23 provision of these and other health-related services For each of the components of the PMTCT strat- bring to the forefront the many ethical dimensions egy, we need to ask, ‘Does it work for women?’ In related to the choices a woman can make and the other words, does the strategy respect and uphold control she has (or does not have) over her body, her women’s sexual and reproductive rights in and of health, and the future of her unborn child.
themselves rather than subsuming their rights underthe rights of the infant (to not be infected ororphaned)? MATERNAL HEALTH AND THE PMTCT
MODEL: ETHICAL CONSIDERATIONS
Component 1: Prevention of HIV infectionamong young people and pregnant women The PMTCT strategy, defined by the World HealthOrganization (WHO) in the late 1990s and endorsed The first component of the PMTCT strategy calls by the United Nations (UN) system, is the frame- for preventing HIV infection among women of work under which maternal health care is meant to reproductive age. Despite repeated calls for coun- be addressed within AIDS responses. PMTCT con- tries to scale up prevention services, as of 2006, glo- bally only 9% of sex acts with a nonregular partnerwere undertaken with the use of a condom. Fewer than 20% of people with sexually transmitted infec- tions, which are known to increase both risk of Prevention of unintended pregnancies among infection and transmission of HIV, were able to get treatment. In sub-Saharan Africa, only 12% of men Prevention of HIV transmission from HIV-positive women to their infants.
20 A. Rosenfield & E. Figdor. Keeping the M in MTCT: Women, Provision of treatment, care and support to Mothers and HIV Prevention. Am J Public Health 2001; 91: 701–703.
HIV-infected women and their families.
21 World Health Organisation (WHO). 2006. Antiretroviral Drugs forTreating Pregnant Women and Preventing HIV Infection in Infants: While comprehensive in theory, in practice PMTCT Towards Universal Access. Recommendations for a Public Health programs have tended to focus on the third com- Approach. Geneva: WHO. Available at: guidelines/pmtctguidelines3.pdf [Accessed 4 July 2007].
ponent of the strategy. The intersection between 22 D. Mbori-Ngacha. Keynote Address. The 2006 HIV/AIDS Imple- HIV and pregnancy exposes the ethical and legal menters Meeting of the President’s Emergency Plan for AIDS Relief, inequalities inherent in a societal structure that Durban, South Africa.
23 Center for Strategic and International Studies (CSIS). 2006. Integrat- places more value on a woman’s reproductive ing Reproductive Health and HIV Programs: Strategic Opportunities forPEPFAR. Washington, DC: CSIS Available at: 19 Graham & Hussein, op. cit. note 15.
media/csis/pubs/060712_hiv.pdf [Accessed 19 June 2007].
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and 10% of women knew their HIV status.24 These programs are indeed meeting the needs of women as facts point to serious failures in prevention efforts despite proven evidence-based strategies that coulddramatically reduce new HIV infections if scaled up.
There are several reasons why prevention efforts are not at the scale and efficacy that they need to be.
First, financing from governments and donors isinadequate. Second, there is often misallocation of Women have inadequate access to contraceptive resources at the country level. Limited human methods to enable them to decide freely if and when capacity, particularly in the most affected countries, to have children. Currently, more than 120 million limits the provision of quality services and results in couples have an unmet need for contraception glo- services that are fragmented and/or not integrated bally.27 The fact that 19 million unsafe abortions with related services. Finally, ongoing stigma and occur annually and 68,000 maternal deaths are the discrimination prevent people from seeking services, result of an unsafe abortion28 attests to the critical particularly those from marginalized groups, who need not only to prevent unwanted pregnancies but are often at greater risk of infection.25 also to ensure access to safe abortion services. The Of ethical concern is the misallocation of lack of comprehensive sexuality education, particu- resources for ideological rather than scientific larly for young people – which is partly driven reasons, which directly undermines prevention by such restrictive approaches as PEPFAR’s efforts. For example, the United States President’s abstinence-only policy – also contributes to the high Emergency Plan for AIDS Relief (PEPFAR) ear- rates of unintended pregnancies. Issues related to marks a significant portion of its funds for strate- the prevention and management of unintended gies, such as abstinence-only programs for young pregnancies in the context of HIV infection and the people, that have less than solid supporting evi- AIDS pandemic pose particular ethical challenges.
Violations of women’s right to choice and to working with marginalized groups to further stig- control their bodies are an unfortunate part of the matize these groups by pledging to oppose prostitu- history of the family planning movement. While the tion as a condition for receiving funds. The impact International Conference on Population and Devel- of PEPFAR funds cannot be understated because opment in 199429 helped shift the focus firmly to a they are a significant source of financing for AIDS rights-based framework for the provision of family prevention efforts. While it could be argued that planning and other reproductive health services, the recipient governments are not in a position to AIDS pandemic has raised new challenges that dictate terms to the donor, one must also consider are increasing the risk of abusive and coercive the ethical responsibilities of donor governments practices, including forced or coerced abortions and that attach ideologically driven restrictions to much-needed funds, which results in the infringe- The reproductive rights of women living with ment on the rights of people to protect their HIV include access to family planning. A cross- health. Recipients who utilize restricted funds for sectional study of 1092 HIV-infected men and PMTCT programs can also be challenged to advo- women attending an AIDS support organisation in cate for a change in such policies. Short of that, itis difficult to support the assertion that PMTCT 27 J. Cleland et al. Family Planning: The Unfinished Agenda. Lancet2006; 368; 1810–1827.
24 Global HIV Prevention Working Group. 2007. Bringing HIV Pre- 28 D.A. Grimes et al. Unsafe Abortions: The Preventable Pandemic.
vention to Scale: An Urgent Global Priority. Online: Henry J. Kaiser Lancet 2006; 368: 1908–1919.
29 United Nations International Conference on Population and Devel- pwg062807execsum.pdf [Accessed 13 July 2007].
30 E. Bell et al. Sexual and Reproductive Health Services and HIV 26 Institute of Medicine. 2007. PEPFAR Implementation: Progress and Testing: Perspectives and Experiences of Women and Men Living with Promise. Washington, DC: National Academies Press.
HIV and AIDS. Reprod Health Matters 2007; 15: 113–135.
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Jinja, Uganda, found that 42% of participants were sexually active; 33% practiced pregnancy risk behaviour, defined as having sex without contracep- tive or condom use; and 73% did not want more The prevention of HIV transmission from HIV- children and were at high risk for unwanted preg- infected women to their infants through antiretrovi- nancies. The study concluded that PMTCT and ral medication is the component of the PMTCT other HIV prevention and care programs should strategy that has been receiving the most attention ensure provision of family planning for HIV- and resources. The major ethical concern for this infected populations who do not want to become component is the continued use of the regimen of pregnant.31 The case of Uganda is not an isolated single-dose nevirapine (NVP). The ethical questions one when it comes to unmet need for contraceptives.
around the trials resulting in this regimen have been This unmet need results in high numbers of discussed in detail and will not be reviewed here.35 unintended pregnancies and high rates of unsafe Current ethical concerns relate to the broad contin- abortions that contribute to maternal deaths, par- ued use of this regimen in the face of evidence that ticularly in countries with highly restrictive abortion the resistance resulting from its use in this single- laws, but also in countries with permissive abortion dose form may jeopardize future treatment options laws if abortions are not operationalized in the public health system and therefore remain Since 2004, there has been evidence that single- dose NVP regimens for PMTCT result in drug resis- There are indeed indications that the need for safe tance in women (and infants) to NVP.36 These abortion is high among HIV-positive women.
findings were of concern because they raised ques- Several studies from around the world have shown tions about future treatment options for women high rates of abortion among HIV-positive women, given that two out of three of the first-line triple- both in countries where it is broadly legal and in combination HIV treatments contain NVP.37 While those with very narrow indications. One study in further studies have since shown that this resistance Europe showed an increase in abortions after HIV goes down over time and may not impact future diagnosis from 42% to 53%, and another in Côte treatment if it is begun six or more months after the d’Ivoire showed that one-third of HIV-positive initial exposure to NVP,38 the risk remains of Women’s ability to exercise fully their sexual and In the face of this evidence, WHO revised its reproductive rights, including the right to safe thera- guidelines in 2005 and made the use of combination peutic abortion, must be upheld. Currently, a very antiretroviral treatment the recommended regimen limited number of countries have an explicit provi- for PMTCT rather than the single dose of NVP sion for therapeutic abortion that includes HIV.33 In during and after delivery.39 The guidelines note that addition to ensuring access to safe abortion services, while it may be necessary to use single-dose NVP as there is a need for more research on complications ‘an absolute minimum’ because of a lack of capacity of unsafe abortion for HIV-positive women, and the to provide the recommended combination regimen, influence of access to antiretroviral treatment on ‘the specific obstacles to delivering more effective regimens should be identified and concrete action 35 de Zuleta, op. cit. note 1.
31 S. Nakayiwa et al. Desire for Children and Pregnancy Risk Behavior 36 J.A. Johnson et al. Emergence of Drug-Resistant HIV-1 after Intra- among HIV-Infected Men and Women in Uganda. AIDS Behav 2006; partum Administration of Single-Dose Nevirapine is Substantially Underestimated. J Infect Dis 2005; 192: 16–23.
32 T. Delvaux & C. Nostlinger. Reproductive Choice for Women and 37 World Health Organization, op. cit. note 21.
Men Living with HIV: Contraception, Abortion and Fertility. Reprod 38 M.S. McConnell et al. Use of Single-dose Nevirapine for the Preven- Health Matters 2007; 15: 46–66.
tion of Mother-to-Child Transmission of HIV-1: Does Development of Resistance Matter? Am J Obstet Gynecol 2007;197: S56–S63.
39 World Health Organization, op. cit. note 21.
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taken to overcome them.’40 A review of PMTCT While HIV testing during prenatal care is sup- programs in 2006, however, indicated that the posed to provide access to HIV treatment beyond majority of women in such programs were given just PMTCT, maternal and child services within which PMTCT programs tend to be located are generally While it could be argued for the reasons cited by not equipped to provide HIV treatment. In turn, WHO that single-dose NVP should continue to be HIV treatment tends to be provided in stand-alone provided, its continued widespread use does raise clinics that the women would have to be referred questions about the commitment to provide women to.43 Without strong referral links between the with the recommended regimen in a timely manner.
antenatal and treatment facilities, the fourth com- With the resources now available to fight AIDS, ponent of the PMTCT strategy remains very such as PEPFAR and the Global Fund to Fight AIDS, TB and Malaria, it should not continue to The MTCT-Plus initiative of Columbia Univer- be acceptable for countries to keep invoking sity that began in 200244 is the first attempt to fully the ‘limited resources’ argument or claim that regi- and effectively implement the whole PMTCT strat- mens are too complex to implement in resource- egy and is an excellent example of what a compre- constrained settings as an excuse for not providing hensive program should look like. This initiative, the safer regimens for women. Similar arguments which was created to counter the limited implemen- were made in the 1990s when advocates were tation of the PMTCT strategy noted earlier, places a pushing for access to treatment for people living strong emphasis on the health and rights of women with HIV in settings with limited resources, particu- and actively promotes the treatment of the family larly sub-Saharan Africa. With political will and unit.45 Once enrolled in MTCT-Plus programs, commitment, access to treatment has improved sig- women and their families receive a wide range of nificantly in resource-limited settings. While recog- services, including medical care, HIV treatment nizing that there are indeed many challenges, there and medicine to prevent opportunistic infections, is no reason for there not to be the same improve- patient education and counselling, reproductive ments in access to treatment for PMTCT. A critical health and family planning, nutritional education starting point, however, will be the same level of and support, and services to promote retention of advocacy for the implementation of the more effec- patients in long-term care. The results to date of the initiative are very encouraging: some 12,000 people,half of them women, have been enrolled, and while69% of women have received single-dose NVP for Component 4: Provision of treatment, care PMTCT, the number of facilities with the capacity and support to HIV-infected women and their to provide combination therapy is growing.
In addition, while traditional PMTCT programs have been struggling to retain women from testing The final component of the PMTCT strategy has, through treatment for PMTCT, the MTCT-Plus until very recently, received the least attention, initiative is showing very high retention rates, with raising the ethical concern about the inadequate less than 600 adults lost to follow-up. This initiative, attention to the treatment needs of the woman not a model that should be taken to scale, is, however, only during pregnancy but also beyond, despite calls currently available in only 13 health facilities in for stronger links between prevention and treatmentprograms.42 43 Abrams et al. Prevention of Mother-to-Child Transmission Servicesas a Gateway to Family-based Human Immunodeficiency Virus Care and Treatment in Resource-limited Settings: Rationale and Interna- 41 T. Smart & L. Sherriff. 2006. PEPFAR: PMTCT Improving but tional Experience. Am J Obstet Gynecol 2007; 197: S101–S106.
Services only Reaching Small Percentage of Women in Need. AIDSmap 44 See International Center for AIDS Care and Treatment Programs (ICAP). Columbia University. 2002. MTCT-Plus Initiative. Online: 2D50BFF6-F8B6-465A-85DD-0090FD27E045.asp. [Accessed 2 July whatwedo/mtctplus/index.html [Accessed 23 Jan 2008].
42 Institute of Medicine, op. cit. note 26.
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eight African countries as well as Thailand.46 found HIV-positive and disclosing one’s status.
Without such programs, and in light of the recent Other consequences can include being forced to push towards routine or provider-initiated testing,47 leave home or other physical or emotional abuse.49 there are legitimate concerns about the potential for In studies on disclosure, 3–15% of women reported identifying many HIV-positive women during negative reactions from partners, including anger, pregnancy as well as the dearth of systems to ensure verbal abuse, violence and abandonment. Fearing they get the future treatment care and support they violence, 16–51% of respondents in studies from Tanzania, South Africa and Kenya did not disclose We have discussed some of the ethical issues and their status,50 limiting their access to treatment and challenges with regard to the current implementation care. These findings highlight deeprooted gender of the PMTCT strategy, particularly with regard to inequalities, which, without measures to redress how it meets the needs and respects the rights of them, will result in HIV-positive women receiving women. It is important to note again that despite less care and suffering other negative health several years into the rollout of the strategy in differ- ent countries around the world, only 10% of women Secondly, while PMTCT programs can result in who are eligible for PMTCT are receiving the ser- women being the first in a family to receive treat- vices. This clearly indicates that there are serious ment, they can also end up jeopardizing this same challenges and barriers to its implementation. While treatment. Due to the stigma associated with being we believe it is important for the strategy, such as it is HIV-positive, many women are coerced into or outlined by WHO, to be fully and robustly imple- forced to share their medicines with their spouse or mented, we also propose that it needs to go beyond partner, who is unwilling to get tested and get his what it is so as to better address women’s needs for own treatment. Such sharing of medications can HIV prevention, treatment and care. This is all the result in drug-resistant strains and ineffective treat- more important in light of evidence that PMTCT ment.51 It is essential therefore to ensure proper programs may not be as effective in preventing pae- support services for women who are tested within diatric infections in real-life contexts, that is, outside PMTCT programs and their families to address these types of challenges. However, there is littleevidence of programs outside of the MTCT-Plusinitiative that are seeking to do so through the pro-vision of comprehensive medical and psychosocial GOING BEYOND PMTCT TO TRULY
services for women and their families.
MEETING WOMEN’S NEEDS
A third concern relates to the equitable access to HIV services. The main point of access to treatment In addition to those discussed above, there are a for HIV-positive women, particularly in developing number of other ways that the PMTCT strategy is countries, is currently within the context of PMTCT not meeting women’s needs and may even be exac- programs. However, because access to these pro- erbating the factors that contribute to the dispro- grams is limited to pregnant women, it raises ques- tions around access and availability of HIV First is the question of testing. Through PMTCT treatment for those women living with HIV who do programs, pregnant women are usually the first in afamily to be tested for HIV. HIV-positive women have testified that violence often results from being 50 A. Medley et al. Rates, Barriers and Outcomes of HIV Sero-disclosure among Women in Developing Countries: Implications for 46 Bell et al., op. cit. note 30.
Prevention of Mother-to-Child Transmission Programmes. Bull World 47 World Health Organization (WHO)/Joint United Nations Pro- Health Org 2004; 82: 299–307.
gramme on HIV/AIDS (UNAIDS). 2007. Guidance on Provider- 51 R. Macklin. 2004. Ethics and Equity in Access to HIV treatment – 3 by Initiated HIV Testing and Counselling in Health Facilities. Geneva: 5 Initiative. Background Paper for the Consultation on Equitable Access to Treatment and Care for HIV/AIDS. Geneva: World Health 2007/9789241595568_eng.pdf [Accessed 3 July 2007].
48 Abrams et al., op. cit. note 43.
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not want or are unable to get pregnant. Indeed, there Development Goals.57 Unfortunately, the political are reports of women who know that they are HIV- will of governments to stand behind and implement positive seeking to become pregnant in order to these important documents is very weak – in large receive antiretroviral therapy, which they know is part because of the resistance to changing powerful more accessible through PMTCT programs.52 There societal norms regarding gender roles and status, have also been anecdotal reports from Tanzania and which the two agreements seek to transform.
Burkina Faso of women who are not pregnant andhave not been able to access HIV testing in certainhealth centres because they are told that the HIV testkits are only for pregnant women.53 CONCLUSION
The lack of strong linkages between sexual and reproductive health programs, including family In this paper, we have sought to highlight ethical planning and maternal health services, has no doubt concerns around the PMTCT strategy as it relates to contributed to the low uptake of PMTCT services.
adequately meeting the needs of women for HIV This low uptake is likely tied to ongoing challenges services in order to draw attention to the need for a of improving women’s access to and use of sexual more comprehensive woman-focused response. The and reproductive health care, including maternal PMTCT strategy is singled out because it is the health care services within which PMTCT is prima- principal point of entry for women to access HIV rily provided. PMTCT programs will not succeed services, particularly for treatment. Our concerns without addressing the broader context of access to include, in particular, the weak emphasis on imple- maternal care, and the maternal health field has menting the first, second and fourth components of many lessons to share with PMTCT programs.
the strategy. The continued practice in the majority Reframing the current response to AIDS to of programs of using single-dose NVP for PMTCT address women’s health needs requires the full over the recommended combination therapy is wor- implementation of two international policy agree- risome. The latter is more effective, and is also a ments – the Programme of Action of the In- better regimen for future treatment options for the ternational Conference on Population and Develop- woman. We have also underscored concerns relat- ment54 and the Platform for Action from the Fourth ing to the impact of selecting pregnant women for World Conference on Women.55 Both agreements testing without adequate psychosocial and other comprehensively address the factors that contribute support systems in place to ensure that they are to the disproportionate impact of the AIDS pan- protected from negative outcomes relating to their demic on women, including their lack of access to status and/or access to treatment, as well as the comprehensive rights-based sexual and reproductive inequitable access to HIV services for women health care services and their limited ability to access treatment and care if HIV-positive. These important With these concerns in mind, we argue for an agreements have informed subsequent policy docu- AIDS response for women that takes into account ments, including the UN Declaration of Commit- the global agreements that have clearly and specifi- ment on HIV/AIDS,56 as well as the Millennium meeting the needs of women and that are of particular relevance with regards to AIDS. Short Johnson et al., op. cit. note 36.
53 Oral communication with Ellen Brazier, Director of Anglophone of such a comprehensive approach, women will Africa Program, Family Care International. 20 September 2007.
continue to be impacted disproportionately by the 54 United Nations. International Conference on Population and Devel- pandemic, and current strategies for prevention, including PMTCT, and treatment will not be as United Nations. Division for the Advancement of Women, op. cit. effective and responsive to needs as they should 56 United Nations. General Assembly Special Session (UNGASS). 2001.
be. Certainly, there will continue to be ethical and 57 United Nations, op. cit. note 14.
2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd.
Cynthia Eyakuze et al.
other challenges, such as those relating to the been saying this for years, and it is past time that guidelines on provider-initiated testing. However, concrete action be taken to redress the situation.58 placing those who are currently bearing the bruntof the pandemic in the hardest-hit parts of theworld at the centre of the response, and ensuring Acknowledgements
that their rights are respected and their needs The authors would like to thank Françoise Girard and Tamar Ezer addressed, can only make for a more effective from the Public Health Program at the Open Society Institute for their valuable comments on early drafts of this paper.
There needs to be a clear message from the global public health community that the systematic refusal 58 World YWCA. 2007. The Nairobi 2007 Call to Action: Declaration to uphold the universally recognized rights of and Suggested Strategies for Implementation made at the World women to healthy sexual and reproductive lives, YWCA International Women’s Summit, July 2007. Online: WorldYWCA. Available at: regardless of HIV status, is not acceptable. Women, world_council_07/iws_women_s_summit/call_to_action/call_to_action including those living with HIV and AIDS, have 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd.

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