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From HIV prevention to reproductive health choices: HIV/AIDS treatment guidelines for women of reproductive age Marion Stevens Published online: 11 Nov 2009.
To cite this article: Marion Stevens (2008) From HIV prevention to reproductive health choices: HIV/AIDS treatment guidelines for women of reproductive age, African Journal of AIDS Research, 7:3, 353-359, DOI: 10.2989/ AJAR.2008.7.3.12.659 To link to this article: http://dx.doi.org/10.2989/AJAR.2008.7.3.12.659
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African Journal of AIDS Research 2008, 7(3): 353–359 Printed in South Africa — All rights reserved
AJAR
ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/AJAR.2008.7.3.12.659
From HIV prevention to reproductive health choices: HIV/AIDS treatment guidelines for women of reproductive age Marion Stevens
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Health Systems Trust, 81 Strubens Road, Observatory, Cape Town 7945, South Africa Author’s e-mail: [email protected] In South Africa, the private sector has responded to the HIV epidemic by providing treatment in the form of highly active antiretroviral therapy (HAART). The private sector has paved the way for policy and treatment regimens, while the public sector has reviewed health-systems capacity and the political will to provide treatment. The paradigm of prevention of mother-to-child transmission of HIV (PMTCT) has led the way as a clear evidenced-based method of treatment and prevention in South Africa. In sub-Saharan Africa, the HIV epidemic is feminised as a growing proportion of infections occurs among women or affects women. While access to HIV treatment has been contested in South Africa, women’s sexual and reproductive health has been neglected. This paper is a reflection and critical review of current practice. Many HIV-positive women desire to choose to have a child, while the best choice of contraception for women on HAART is not well understood. In some areas there are reports of women being forced to accept injectable contraceptives. Some women who learn of their HIV-positive status during pregnancy may want to choose to terminate their pregnancy. There is a clear absence of HIV/AIDS-treatment guidelines for women of reproductive age, including options for HAART and options regarding fertility intentions. A range of other sexual and reproductive health areas (relevant to both the public and private health sectors) are neglected; these include depression and anxiety, violence against women, HIV-testing practices, screening for cervical cancer, and vaccination. Given the narrow focus of HAART, it is important to expand HIV treatment conceptually, by applying a broader view of the needs of working women (and men), and so contribute to better HIV prevention and treatment practices. There is a need to move from an HIV/AIDS-care maternal-health paradigm to one that embraces women’s sexual and reproductive health and rights. Keywords: policy development, reproductive and sexual health, reproductive rights, South Africa, treatment accessibility, women’s health
Introduction In South Africa, treatment related to HIV and AIDS has been contested (Posel, 2005), leading to a context where activists advocating for access to antiretroviral treatment (ART) have used the courts to compel government to provide it (Gevisser, 2007). Groups in the private sector, and disease management schemes in particular, have led the way in implementing HIV/AIDS treatment by enlisting members onto treatment and providing treatment for opportunistic infections (pers. comm., L. Regensberg, clinical director, Aid for AIDS, South Africa, June 2007). The first realm of treatment to become more available was prevention of mother-to-child transmission of HIV (PMTCT) (Peacock, Budaza & Greig, 2008). Subsequently, this has led to some negative or emotive language being used in the health sector; examples include health workers referring to HIV-positive pregnant women as ‘suicide bombers’ (International Community of Women Living with HIV/AIDS [ICW], 2007; pers. comm., S. Hlope, director, SWAPOL, Swaziland, May 2008; pers. comm., N. Nkwe, advocacy officer, Bonela, Botswana, May 2008) and calls for proposals related to PMTCT entitled ‘saving unborn babies’
(Organization of African First Ladies Against HIV/AIDS, 2008). Eyakuze, Jones, Starrs & Sorkin (2008) eloquently argue that PMTCT as a strategy has not adequately considered HIV-positive women and that the emphasis has been on the unborn infant. They further suggest that given the rationing of treatment, some women have chosen to get pregnant in order to access HIV treatment; they also note that in some settings HIV-testing kits have been reserved for pregnant women only (Eyakuze et al., 2008). This can lead to HIV-positive women being viewed negatively or being unnoticed in PMTCT treatment programmes, and rather seen as instruments for potentially passing the virus to their infants. As HAART and PMTCT are still normalising as treatment processes within the continuum of care, this article explores gaps in particular services within a sexual and reproductive health and rights framework. It is argued that the particular maternal-health paradigm in which HIV treatment has taken place informs an approach to conceptualising treatment, care and support, which has limitations and acts as a barrier to addressing the epidemic. With the HIV epidemic having become feminised, and some 60% of infections in sub-Saharan Africa occurring among women (UNAIDS,
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2004; De Cock & De Lay, 2008), it is important to review the continuum of care1 available in both the public and private sectors. A key challenge is to address the need for HIV/ AIDS treatment guidelines for women of reproductive age (aged 15–45 years). I argue that this should be central to concepts of HIV prevention, which ought to affirm positive choices, as opposed to carried out as separate programming, which is often dominated by negative messaging on sexuality, similar to messages in the era of population control (United Nations, 1994). Currently, the ‘treatment page’ within the private and public health sectors does not contain a broad conceptualisation of women’s health. This article explores the notion of a broader concept of women’s health and so argues for a broader treatment continuum that fundamentally considers women’s health. Methods The qualitative analysis draws on two methodological frameworks: policy analysis (Walt & Gilson, 1994) and agenda-setting (Kingdon, 2003). The Walt & Gilson (1994) policy-analysis triangle presents a framework for exploring the context, content, processes and actors in the policy arena under investigation. In this methodology, those four areas are used to inform analysis by reviewing insights gained from studying a particular policy space. Policy processes often focus on content and ignore other vital areas. Kingdon’s (2003) idea of agenda-setting notes the multiple streams engaged in a policy space and allows one to explore the range of determinants at play, including problems, politics and policies. Data were collected through key informant interviews and by reviewing relevant literature, between March 2007 and June 2008. This included immersion in the field and participant observation in a range of processes and activities. A key process was the writing of the chapter on the private health sector in South Africa for the South African Health Review 2007 (Stevens, Sinovic, Regensberg & Hislop, 2007), text which identified a very limited continuum of care provided by disease management programmes with reference to women’s health. I also attended the January 2008 hearings on the Choice on Termination of Pregnancy Amendment Act and collated the review of sexual and reproductive health and rights indicators for the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) in a collaborative process with 20 organisations in South Africa (Stevens, 2008). This paper was previously presented at the 2nd Wits HIV/AIDS in the Workplace Symposium (Johannesburg, May 2008) and subsequently has incorporated insights and comments from those who participated in the sexual and reproductive health-and-rights session and roundtable. During the research period 38 interviews were held with a range of stakeholders involved in the area of HIV/AIDS and women’s health, including researchers, activists, health workers, trade unionists and HIV-positive women. Sampling was purposive. The interviews did not follow a standardised format but focused on the intersection of HIV/AIDS and women’s health. Field notes were kept. Emerging themes and issues were framed in the following policy-analysis
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categories: context, content, processes, and actors (as individuals and organisations) (according to Walt & Gilson, 1994). Themes were also noted within the agenda-setting model (after Kingdon, 2003), noting what dominated and what was viewed as important, and, equally illustrative, what was viewed as unimportant. Findings A limited disease management continuum A review of disease management programmes in the private sector and health services at a primary care level showed that HIV/AIDS services essentially incorporate HIV testing, HAART and PMTCT. Counselling is also provided. In the private sector counselling usually takes the form of information-giving by a nurse from a call centre, using a computer software programme where the items related to a client are ticked off (pers. comm., L. Regensberg, clinical director, Aid for AIDS, South Africa, June 2007). In contrast, there is inadequate counselling available in the public sector, and its quality is often disappointing (Brandt, 2008) or variable. Given human resources constraints, counselling has become a competency that has been task-shifted down to community health workers and HIV-treatment literacy practitioners, who are typically unregulated and under-remunerated, yet who provide a valuable service. With recent shifts in HIV-testing practices — from voluntary counselling and testing (VCT) to provider-initiated testing — pre-test counselling is often under pressure and thus the emphasis often shifts to post-test counselling. Those who are unprepared for an HIV-positive test result — particularly women — can be subjected to abuse from partners, families and communities (Bell, Mthembu & O’Sullivan, 2007; Eyakuze et al., 2008; Kehler, 2008). This has deterred women from using services since they realise that they might be subject to HIV testing when they are not prepared for a positive diagnosis (Kehler, 2008). Hence, there is a need to carefully consider HIV-testing practices and to ensure that they enable women’s access to care. There are clear gaps in other key health services for women. Sexually transmitted infections (STIs) are not dealt with in the continuum of care. Within the private sector, disease management programmes generally fail to deal with this issue. Stevens et al. (2007), in considering STI treatment in the private sector, reviewed the research and literature produced by the Centre for Health Policy (Johannesburg), which revealed the inadequacy of treatment. Patients seek privacy and believe that they are getting good care; however, treatment is often dependent on what patients can afford to pay (Stevens et al., 2007). Treatment for STIs does not include screening for violence against women, and thus not screening means that there is missed opportunity for appropriately referring women or for counselling them about their rights. Violence against women is also not dealt with clearly within the continuum of HIV/AIDS services within the public and private health sectors (Jacobs, 2008; Meerkotte, 2008). Given that violence against women is endemic in the region, with some 40% of women reporting contact sexual abuse before the age of 18 years (Jewkes & Christofides, 2008) and their limited ability to negotiate safer sex, this
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should be part of the continuum of care, with health workers being better informed of developments within the legal and political processes concerning sexual assault. Women’s mental health problems (particularly depression) are also frequently undiagnosed and untreated within HIV care services (Brandt, 2008). One especially pertinent time is the antenatal to postnatal period, during which time women are also likely to come into contact with public health services, with consequent opportunities for treatment and care. Cervical cancer associated with the human papilloma virus (HPV) is more common in HIV-positive women and is viewed as an opportunistic infection. Currently, screening for it in the form of PAP smears is ineffective. Patients in under-resourced areas have limited options for cervical cancer treatment (Cancer Research Initiative of South Africa [CARISA], 2008). With the recent registration of cervical cancer vaccines in South Africa, which are believed to be 80–100% effective for HPV-16 and HPV-18 (the main virus types viewed as a precursor to cervical cancer) there is a need to explore implementation of immunisation as a prevention strategy. Women on HAART can still die of cancer of the cervix (Asheber, Mashego, Kharsany, Walldorf, Frohlich & Abdool Karim, 2007; Thomas, 2008). The private sector could take the lead in providing care to dependants and in sponsoring schools linked to workplaces in mining areas by providing HPV immunisation. The treatment of STIs, violence against women, post-natal depression, screening and vaccination for cervical cancer are important features to integrate into the continuum of HIV/AIDS care. This is applicable to disease management programmes within the private sector and it also applies to integrating sexual and reproductive healthcare and HIV care in the public sector. A review of Aid for AIDS (AfA), the longest-running disease management programme (DMP) in South Africa (which has the largest number of people enrolled in the private sector), identified a number of gaps in the programme. It is evident that women are the main client base of this DMP, constituting approximately 61% of enrolees on the treatment programme, with about one-quarter of them being pregnant. Some 74% of AfA clients are aged 25–45 years, which covers the main reproductive period. In 2007, AfA had no procedures or guidelines in place for HIV-positive women wanting to have a child. Although options should be available for an HIV-positive woman wanting to have an abortion, this would not be part of the continuum of HIV/AIDS care and would need to be covered in terms of the routine benefits of a medical scheme. Yet the programme has a large focus on PMTCT. Most DMPs in South Africa would have a similar approach (Stevens et al., 2007). Choice and intentions: invisible processes A key gap in the disease management continuum is the area of sexual health, fertility and reproductive intentions. A woman who is HIV-positive can be assisted to ensure that her baby is born HIV-negative. However, the process of discussing her intentions to become pregnant is generally stigmatised. HIV-positive women who feel well on treatment and who would like to have a baby are not generally viewed
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as part of the continuum of care (De Bruyn, 2004 and 2006). Attitudes similar to those held in the era of population control are pervasive in that they generate judgemental and stigmatising attitudes, within all communities. A study reviewing reproductive intentions noted that most respondents (men and women) had not discussed their reproductive intentions due to anticipated negative reactions; those who had, found the counselling environment unsupportive of the open discussion needed to inform clients’ decision-making (Cooper, Harries, Meyer, Orner & Bracken, 2007). It was also noted that those women who desired to get pregnant wanted to ensure their own access to treatment, and not just receive treatment for their babies. These findings have been echoed in health workers’ harsh attitudes about negotiating care regarding choices they would like to make in wanting to become pregnant (De Bruyn, 2006; Bell et al., 2007). Importantly, it must be remembered that women have the right to choose to have an abortion (De Bruyn, 2006). These concerns have been articulated in a South African civil society press release on sexual and reproductive health and rights indicators (Stevens & De Vos, 2008) and in a position statement by southern African civil society (SafAIDS, 2008), both of which were released in preparation for the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) meeting in June 2008. Some 50% of all pregnancies are unplanned (World Health Organization [WHO], 2006; Gipson & Hindon, 2008). Women have sex that is negotiated and involves safer sex, and they also have non-negotiated sex. There has been a significant focus on barrier methods of safer sex, with a large investment in condoms, although limited investment has been made in female condoms (Brink, 2008). It is insightful to explore the context in which HIV prevention has taken place: notably, barrier methods are different from contraception, in that barrier methods have the dual role of preventing both HIV transmission and pregnancy. Pregnancy choices are not generally on the agenda, whether planning a pregnancy or negotiating a termination. There needs to be discussion of contraception within the continuum of care and an acknowledgement of the choices available to clients. With the recent implementation of the Public Finance Management Act, contraception provision was discontinued in tertiary healthcare facilities in South Africa because it was viewed as a competency of primary healthcare (Mhlanga, 2008). As a result, a large proportion of clients who previously obtained contraception at a tertiary-care facility then had to take time off work and queue to obtain services at the level of primary care. However, the decision to discontinue contraception provision was more recently reversed (Mhlanga, 2008). Emergency contraception is not well understood or widely implemented and not readily available in all settings. Some clinicians complain that clients abuse emergency contraception. However, Abuabara, Becker, Ellertson, Blanchard, Schianvon & Garcia (2004) conclude that it is safe to use repeatedly, and that concern should rather be directed at situations when contraception is not used every time that it is needed. The best choice of contraception for those who are HIV-positive is not well understood (De Bruyn, 2006;
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WHO, 2006; Coll, Lopez & Hernandez, 2008). It has been suggested that women on HAART should use hormonal contraception with caution (Coll et al., 2008). Similarly the Department of Health and Human Services (DHHS) in the United States notes that the interactions of HAART and TB drugs (e.g. rifampicin) and hormonal contraception alter the bioavailability of the contraceptive drug and essentially cause a reduction in the effectiveness of the contraception (Department of Health and Human Services [DHHS], 2008). The impact of the progesterone-only injectable is unknown. There is also limited data to suggest that hormonal contraception may increase disease progression in people with HIV infection (Baeten, Lavreys & Overbaugh, 2007; Stringer, Kaseba, Levy, Sinkala, Goldenberg, Chi et al., 2007). Earlier studies suggested that an association between use of intrauterine devices (IUDs) and genital tract infections (Teal, 2007). The World Health Organization does not recommend IUDs for women who have AIDS and are not on HAART (WHO, 2006). Most of these studies have been conducted in well-resourced settings and so it is difficult to interpret their findings in the context of southern Africa — in a context of developing health systems, implicit rationing and inequity. There is a need for more research to inform this area of concern.
HIV/AIDS treatment guidelines for women of reproductive age: more than just the content Existing guidelines Given an HIV pandemic that is feminised, HIV/AIDS treatment guidelines are an emerging issue. In January 2008 the US Department of Health and Human Services published a 127-page guide entitled Guidelines for the Use of Antiretroviral Agents in HIV-1-infected Adults and Adolescents, devoting two paragraphs to the topic of women of reproductive age; the guidelines suggest that “in women of reproductive age, antiretroviral regimen selection should take account of the possibility of planned or unplanned pregnancy. The most vulnerable stage in fetal organogenesis is early gestation, often before pregnancy is recognised. Sexual activity, reproductive plans, and use of effective contraception should be discussed with the patient” (DHHS, 2008, p. 47). The WHO guidelines entitled Sexual and Reproductive Health of Women Living With HIV/AIDS — Guidelines on Care, Treatment and Support for Women Living With HIV/AIDS and their Children in ResourceConstrained Settings (WHO, 2006) begin to address these issues conceptually and they suggest possible treatment options, yet the guidelines are tentative and exploratory, rather than explicit. Within South Africa, specific treatment for women of reproductive age is not addressed in the Guidelines for the Management of HIV and AIDS in Health Facilities (Department of Health, 2008), the guidelines of the Southern African HIV Clinicians Society (2008), or the Treatment Action Campaign’s (TAC) commentary on the draft 2008 Department of Health Management of HIV Guidelines (TAC, 2008a). Thus, two groups that have led comment on HIV/ AIDS treatment in South Africa have not interrogated this issue thoroughly.
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Some HAART contra-indicated in pregnancy Currently the first-line HAART regimen used for women contains efavirenz. The new first-line regimen to replace D4T (stavudine) will include tenofovir (Department of Health, 2008). Efavirenz is contraindicated in pregnancy and is listed as a category-D drug by the DHHS, meaning that it is seen as teratogenic and that there is positive evidence of human foetal risk. Tenofovir is listed as a category-B drug, suggesting that animal reproductive studies have failed to demonstrate a risk to the foetus, but that adequate studies of pregnant women have not been conducted. There are concerns regarding tenofovir in terms of area under concentration (AUC) in pregnancy, yet a greater challenge is the evidence in animal studies of reduced foetal growth. The DHHS (2008) suggests that because of the lack of data on use in human pregnancy and concern regarding potential foetal bone defects, tenofovir should only be used as a component of a maternal combination-regimen after careful consideration of alternatives. Tenofovir is currently not registered for use in children and the DHHS (2008) guidelines clearly suggest that it is not a good choice for a woman of reproductive age. HAART and preventing pregnancy In protests by treatment advocates in South Africa which led to the registration of tenofovir, HIV-positive women activists commented that they were keen to have D4T replaced with tenofovir, because they were ‘losing their figures’ on D4T. This comment referred to the D4T side effect of lipodystrophy, causing a ‘tummy tyre’ and thin arms and legs. While lipodystrophy is of concern, the fact that activists were aware of this side effect but not aware of the risks of tenofovir for pregnancy is pertinent. In exploring similar issues at a meeting in December 2007 with the International Community of Women Living with HIV/AIDS (ICW) (2007), it became evident that there were reports that women in South Africa and other southern African countries were receiving injectable contraceptives, together with a HAART regimen, to ensure that they would not become pregnant. In-depth discussion revealed that women were counselled to not become pregnant, and also that they had varying understandings of the side effects of treatment. Some reported that they had realised only later that the injection they were receiving was a contraceptive, and so this had not been their informed choice. De Bruyn (2006) reported similar findings, noting some antiretroviral treatment programmes require women to use providerdefined contraceptive methods to be eligible for treatment. Such coercive use of contraceptives could be likened to paternalistic population-control measures that take charge of women’s fertility by withholding information from clients. HIV-positive women choosing to get pregnant As argued above, most literature and guidelines for HIV/ AIDS treatment address pregnant women (not women in general), and the underlying intention is to reduce HIV transmission from a mother to unborn infant. Eyakuze et al. (2008, p. 36) state: “While comprehensive in theory, in practice, PMTCT programs have tended to focus on the third component of the strategy. The intersection between
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HIV and pregnancy exposes the ethical and legal inequalities inherent in a societal structure that places more value on a woman’s reproductive capacity than her own individual wellbeing.” This situation has led to a missed opportunity for serving the needs of women who choose to get pregnant while HIV-positive. There are also missed opportunities to help women who are pregnant and who would like to have an early abortion (De Bruyn, 2004). A woman can choose to be pregnant and then negotiate HIV-treatment options to avoid vertical transmission, but the healthcare processes involved in planning pregnancy and being pregnant (and leading up to the second and third trimesters) are not provided for. In reviewing literature on the effects of unintended pregnancy on infant, child, and parental health, Gipson & Hindon (2008) note that there are clear areas for consideration that should inform a better continuum of HV/AIDS care. They note that women who have unintended pregnancies do not breastfeed as much as those who have planned pregnancies. Recent findings suggest that exclusive breastfeeding for the first six months is a better option in resource-poor settings (Coutsoudis, Coovadia & Wilfert, 2008), and this highlights the need to provide women with clearer choices. Women with unplanned pregnancies also have a greater risk of maternal depression than those who intentionally become pregnant (Gipson & Hindon, 2008). This suggests that processes of client counselling which support clients’ fertility intentions would contribute to better health outcomes. Positive choices in treatment There are different HAART-regimen options for women of reproductive age. Research presented at the International AIDS Conference in Mexico, in August 2008, suggests options for treatment regimens appropriate for pregnancy (Roberts, Martinez, Covington, Pasley & Woodward, 2008). Such evidence needs to be explored and translated by a multidisciplinary team to create HIV/AIDS treatment guidelines for women of reproductive age. The development of such guidelines may not be taking place because HAART is seen as gender neutral, and there is a substantial backlog of people needing but not yet on treatment. There is a failure to acknowledge that the condition of people on treatment improves, and conversations about clients’ desires to have children are frequently overlooked by clinicians (Averitt Bridge, Hodder, Squires, Aberg, Abrams, Storfer & Feinberg, 2008). Donors to both public sector and private sector health programmes have particular views of women’s health, which have been restrictive. Efforts to redress this and to establish a comprehensive and integrated HIV-prevention strategy to address the vulnerabilities of women and girls to HIV infection would include abolishing the requirement from some funders that one-third of all HIV-prevention funding be spent on abstinence-untilmarriage programmes (PEPFAR Watch, 2008). Essential actors: health workers There is a tacit belief that those who are HIV-positive should not have children. Such discriminatory and stigmatising attitudes are pervasive, and they are a barrier to women
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being able to discuss their fertility intentions with healthcare workers (De Bruyn, 2006; Bell et al., 2007; Cooper et al., 2007). Given the huge burden of HIV care for health workers and the challenges of limited human resources, health workers require ongoing education and increased support and supervision. Health workers within the private and public health sectors should be aware of a suitable first-line regimen for HIV-positive women of reproductive age. They should offer time to assist clients with decision-making in regard to their fertility intentions. Such a dialogue would welcome discussion, be non-directive, and provide neutral non-judgemental information that is affirming of clients’ preferences. HIV-treatment guidelines should be nuanced and individualised. In contrast, there is already a culture of community treatment literacy, in the form of treatment practitioners and peer supporters, and ordinary men and women who have gained treatment literacy through experience with complex HAART regimens (TAC, 2008b). An HIV/AIDS-treatment regimen for women of reproductive age may be more complex than existing first-line regimens, and, initially, possibly more costly. Such a regimen will surely challenge existing beliefs. However, it is imperative to consider the consequences of not providing HIV/AIDS treatment for women of reproductive age and which embraces the individual’s choice to have children. Given that some 50% of pregnancies are unintended, it would be good practice to address the topic of fertility intentions among persons with HIV infection. If these issues are not addressed, there may be consequences for treatment adherence and drug resistance (ICW, 2007). Enforced contraception for HIV-positive women is a bad practice in myriad ways in terms of legal infringements and missed opportunities of care (pers. comm., N. Ntlokwana, attorney, Women’s Legal Centre, South Africa, March 2008). Meanwhile, women are becoming pregnant while HIV-positive, suggesting that they are acting on their own fertility intentions without the support of healthcare providers (ICW, 2007). The prevention, control, choice continuum Efforts to address the HIV epidemic are informed by various prevention paradigms, processes and activities. Given the devastating spread of an epidemic that has sex as its central normative activity, HIV prevention is a great challenge. Most HIV prevention activities focus on limiting sexual activity as evidenced by the ‘ABC’ strategy (abstain, be faithful, use condoms). During 2007, the public sector in South Africa distributed 11 male condoms per male aged 15 years or older (Barron, Day & Monticelli, 2007). This was a considerably higher rate of distribution than was carried out for female condoms, for which distribution is underfunded and inequitable (pers. comm., F. Nicolson, director, Thohoyandou Victim Empowerment Programme, South Africa, May 2008). Unequal gender relations and the inherent lack of choice that women have in negotiating sex and safer sex make current HIV-prevention messaging unlikely to succeed. The HIV-prevention paradigm is negative insofar as it seeks to limit and control sexual practice. Language that
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informs HIV prevention is also negative insofar as it may refer to ‘stopping, avoiding, standing in the way.’ The language of HIV prevention is also unfortunately related to the language of contraception and family planning, which many clients also colloquially refer to as ‘prevention.’ There is a conceptual gap in HIV/AIDS treatment reminiscent of the era of population control, in that it does not affirm women’s own choices or allow them full control of their fertility. In 1994 the International Conference on Population and Development (ICPD), in Cairo, changed the populationcontrol agenda, informed by clear research data indicating that women empowered with information could make more informed life-affirming choices to determine their future, and that development (housing, water and education) was also a key issue affecting women’s health (United Nations, 1994). In a similar fashion, giving women choices that reflect their fertility intentions, and that are consistent with HAART treatment regimens, could contribute to better health outcomes. The lack of appropriate, well-articulated HIV/AIDS treatment guidelines for those most in need of treatment and for groups with relatively high prevalence (e.g. women of reproductive age) indicates an important shortcoming in both the public and private health sectors. For HIV prevention to work better, we need to affirm women’s wellbeing and provide them with better choices. Women need to be provided with a continuum of care that takes into account their sexual and reproductive health and fertility intentions. All women (those with HIV infection or those without) need to be empowered to make informed choices to get pregnant, to terminate pregnancy, or to have a healthy pregnancy and infant. There is a need to move away from a maternal-health paradigm and away from conceptualising HIV treatment for women as mothers only. Conclusions This investigation has outlined how a policy of HIV/AIDS treatment guidelines for women of reproductive age involves much more than content. It has revealed the complex and contested context in which treatment is taking place and notes the influence of the actors and processes at play. As an actor, the private sector and disease management schemes have taken a lead in providing treatment, although HIV/AIDS-treatment regimens for women of reproductive age remain inadequate. There is a need to interrogate the broad failure to integrate women’s health and HIV/AIDS care, given that we have a feminised HIV epidemic with women of reproductive age at its centre. Women are being provided with HIV/ AIDS treatment in a limited continuum of care that does not engage with and fully explore the breadth of women’s health issues. It is suggested that adopting a more comprehensive approach could contribute to HIV-prevention efforts as women gain confidence that they are respected and able to make choices regarding their bodies. Similar to the turn-around in the population-control paradigm, this may facilitate women’s development, empowerment, and ability to take responsibility for controlling their reproduction and for negotiating safer sex. There is a need to afford women
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choices and to move away from a maternal-health paradigm to one that embraces sexual and reproductive health and rights and specifically women’s health. The development of appropriate guidelines for HAART for women of reproductive age would be a significant contribution. Will the private sector, disease management schemes or workplaces take the lead again? Notes 1
The concept of ‘continuum of care’ refers to a comprehensive and integrated approach to care, which has a seamless system involving places to obtain care, and a full range of particular services matched with different service providers and levels of care.
Acknowledgements — Thanks are extended to Maria de Bruyn (Ipas), Courtney Sprague (Wits Business School), and Johanna Kehler (AIDS Legal Network) for their comments. The author — Marion Stevens has a background as a health worker and in social anthropology and public and development management. She does research, policy work, and advocacy in the area of women’s health and HIV/AIDS. Currently she is the Project Manager of the Treatment Monitor at the Health Systems Trust and is based in Cape Town.
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management for HIV-positive women. Current Opinion on HIV and AIDS 3, pp. 186–192. Cooper, D., Harries, J., Meyer, L., Orner, P. & Bracken, H. (2007) ‘Life is still going on’: Reproductive intentions among HIV-positive women and men in South Africa. Social Science and Medicine 65, pp. 274–283. Coutsoudis, A., Coovadia, H. & Wilfert, C. (2008) HIV, infant feeding and more perils for poor people: new WHO guidelines encourage review of formula milk policies. Bulletin of the World Health Organization 86, pp. 210–214. De Bruyn, M. (2004) Living with HIV: challenges in reproductive health care in South Africa. African Journal of Reproductive Health 8(1), pp. 92–98. De Bruyn, M. (2006) Women, reproductive rights, and HIV/AIDS: issues on which research and interventions are still needed. Journal of Health, Population and Nutrition 24(4), pp. 413–425. De Cock, K. & De Lay, P. (2008) ‘Correction to AIDS story.’ The Independent, 8 June 2008. Department of Health [South Africa] (2008) Guidelines for the Management of HIV and AIDS in Health Facilities. Pretoria, Government of South Africa. Department of Health and Human Services (DHHS) [USA] (2008) Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents. Bethesda, Maryland. National Institutes of Health, Office of AIDS Research Advisory Council (OARAC). Eyakuze, C., Jones, D., Starrs, A. & Sorkin, N. (2008) From PMTCT to a more comprehensive AIDS response for women: a much-needed shift. Developing World Bioethics 8(1), pp. 33–42. Gevisser, M. (2007) Thabo Mbeki: The Dream Deferred. Cape Town, South Africa, Jonathan Ball. Gipson, J.K. & Hindon, M. (2008) The effects of unintended pregnancy on infant, child and parental health: a review of the literature. Studies in Family Planning 39, pp. 18–38. International Community of Women Living with HIV/AIDS (ICW) (2007) Sexual and reproductive health litigation consultation, Durban, South Africa, December 2007. Jacobs, T. (2008) Violence against women and HIV/AIDS. Sexual and Reproductive Health and Rights Roundtable, 4th Public Health Association of South Africa Conference, Cape Town, South Africa, 2–4 June 2008. Jewkes, R. & Christofides, N. (2008) Keynote address: Teenage pregnancy — rethinking prevention. Fifth Youth Policy Initiative Roundtable on Teenage Pregnancy. Pretoria, South Africa, Human Sciences Research Council, 6 March 2008. Kehler, J. (2008) Testing practices for HIV/AIDS. Sexual and Reproductive Health and Rights Roundtable, 4th Public Health Association of South Africa Conference, Cape Town, 2–4 June 2008. Kingdon, J.W. (2003) Agendas, Alternatives and Public Policies. New York, Addison-Wesley. Meerkotte, A. (2008) Violence against women and HIV/AIDS. Paper presented at the Sexual and Reproductive Health and Rights Roundtable, 2nd HIV/AIDS in the Workplace Symposium, Wits Business School, University of the Witwatersrand, Johannesburg, South Africa, 29 May 2008. Mhlanga, E. (2008) Choice on Termination of Pregnancy Amendment Act. Health Committee Proceedings, Cape Town, South Africa. Organization of African First Ladies Against HIV/AIDS (2008) Online posting: http://commitments.clintonglobalinitiative.org/projects. htm?mode=view&rid=209674 [Accessed 11 September 2008]. Peacock, D., Budaza, T. & Greig, A. (2008) The Treatment Action Campaign’s activism. In: Ndinga-Muvumba, A. & Pharoah, R. (eds.) HIV/AIDS and Society in South Africa. Durban, South Africa, University of KwaZulu-Natal Press. PEPFAR Watch (2008) ‘PEPFAR Watch — Promoting
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accountability of US global HIV/AIDS programs through information and advocacy.’ Downloads available at: www. pepfarwatch.org [Accessed 11 June 2008]. Posel, D. (2005) Sex, death and the fate of the nation: reflections of the politicization of sexuality in post-apartheid South Africa. Africa 75(2), pp. 125–153. Roberts, S.S., Martinez, M., Covington, D.L., Pasley, M.V. & Woodward, W. (2008) Lopinavir/ritonavir in pregnancy. Program and abstracts of the 17th International AIDS Conference, Mexico City, Mexico, 3–8 August 2008. Abstract No. TUPE0120. SafAIDS (2008) ‘Common position on involvement and participation of CS [civil society] in UA [universal access] processes in southern Africa.’ Circulated by Sara Page. eForums — Healthdev.org. Online at: http://www.healthdev.org/viewmsg. aspx?msgid=d44de5de-010d-4b33-a0d7-c51c7f8dcd8b. Southern African HIV Clinicians Society (2008) ‘Guidelines.’ Johannesburg, South Africa. Available at: http://www.sahivsoc. org/index.php/guideline [Accessed 10 June 2008]. Stevens, M. (2008) UNGASS Report on Sexual and Reproductive Health Indicators: A Case Study from South Africa. Durban, South Africa, Health Systems Trust and MOSAIC. Stevens, M. & De Vos, M. (2008) Press release: ‘Civil society calls on government to meet international HIV/AIDS obligations regarding sexual and reproductive health. United Nations General Assembly Special Session on HIV/AIDS (UNGASS).’ Health Systems Trust, 23 May 2008. Online at: http://www. citizenjournalismafrica.org/node/839. Stevens, M., Sinanovic, E., Regensberg, L. & Hislop, L. (2007) HIV and AIDS, STIs and TB in the private sector. In: The South Africa Health Review 2007. Durban, South Africa, Health Systems Trust. Stringer, E.M., Kaseba, C., Levy, J., Sinkala, M., Goldenberg, R.L., Chi, B.H., Matongo, I., Vermund, S.H., Mwanahamuntu, M. & Stringer, J. (2007) A randomized trial of the intrauterine contraceptive device vs hormonal contraception in women who are infected with the human immunodeficiency virus. American Journal of Obstetrics and Gynecology 197(2), pp. 144.e1–144. e8. Teal, G.D. (2007) Contraception for women with chronic medical conditions. Obstetrics and Gynecology Clinics of North America 34, pp. 113–126. Thomas, C. (2008) HPV vaccines: ‘Bring me your daughters!’ South African Medical Journal 98(4), pp. 259–261. Treatment Action Campaign (TAC) (2008a) TAC commentary on the draft 2008 Department of Health Management of HIV Guidelines. Presented to the South African National AIDS Council Treatment Task Team on Treatment Care and Support on 15 May 2008. Treatment Action Campaign (TAC) (2008b) ‘TAC’s Treatment Literacy Materials.’ TAC, Cape Town, South Africa. Available at: http://www.tac.org.za/community/treatmentliteracy [Accessed 10 June 2008]. UNAIDS (2004) Women and AIDS — A Growing Challenge. Geneva, UNAIDS. United Nations (1994) Programme of Action of the International Conference on Population and Development (Cairo, Egypt, 5–13 September 2008). Online at: http://www.iisd.ca/Cairo/program/ p00000.html#top. Walt, G. & Gilson, L. (1994) Reforming the health sector in developing countries: the central role of policy analysis. Health Policy and Planning 9, pp. 353–370. World Health Organization (WHO) (2006) Sexual and Reproductive Health of Women Living with HIV/AIDS: Guidelines on Care, Treatment and Support for Women Living with HIV/AIDS and their Children in Resource-Constrained Settings. Geneva, WHO and UNFPA.
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From HIV prevention to reproductive health choices: HIV/AIDS treatment guidelines for women of reproductive age Marion Stevens Published online: 11 Nov 2009.
To cite this article: Marion Stevens (2008) From HIV prevention to reproductive health choices: HIV/AIDS treatment guidelines for women of reproductive age, African Journal of AIDS Research, 7:3, 353-359, DOI: 10.2989/ AJAR.2008.7.3.12.659 To link to this article: http://dx.doi.org/10.2989/AJAR.2008.7.3.12.659
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African Journal of AIDS Research 2008, 7(3): 353–359 Printed in South Africa — All rights reserved
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ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/AJAR.2008.7.3.12.659
From HIV prevention to reproductive health choices: HIV/AIDS treatment guidelines for women of reproductive age Marion Stevens
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Health Systems Trust, 81 Strubens Road, Observatory, Cape Town 7945, South Africa Author’s e-mail: [email protected] In South Africa, the private sector has responded to the HIV epidemic by providing treatment in the form of highly active antiretroviral therapy (HAART). The private sector has paved the way for policy and treatment regimens, while the public sector has reviewed health-systems capacity and the political will to provide treatment. The paradigm of prevention of mother-to-child transmission of HIV (PMTCT) has led the way as a clear evidenced-based method of treatment and prevention in South Africa. In sub-Saharan Africa, the HIV epidemic is feminised as a growing proportion of infections occurs among women or affects women. While access to HIV treatment has been contested in South Africa, women’s sexual and reproductive health has been neglected. This paper is a reflection and critical review of current practice. Many HIV-positive women desire to choose to have a child, while the best choice of contraception for women on HAART is not well understood. In some areas there are reports of women being forced to accept injectable contraceptives. Some women who learn of their HIV-positive status during pregnancy may want to choose to terminate their pregnancy. There is a clear absence of HIV/AIDS-treatment guidelines for women of reproductive age, including options for HAART and options regarding fertility intentions. A range of other sexual and reproductive health areas (relevant to both the public and private health sectors) are neglected; these include depression and anxiety, violence against women, HIV-testing practices, screening for cervical cancer, and vaccination. Given the narrow focus of HAART, it is important to expand HIV treatment conceptually, by applying a broader view of the needs of working women (and men), and so contribute to better HIV prevention and treatment practices. There is a need to move from an HIV/AIDS-care maternal-health paradigm to one that embraces women’s sexual and reproductive health and rights. Keywords: policy development, reproductive and sexual health, reproductive rights, South Africa, treatment accessibility, women’s health
Introduction In South Africa, treatment related to HIV and AIDS has been contested (Posel, 2005), leading to a context where activists advocating for access to antiretroviral treatment (ART) have used the courts to compel government to provide it (Gevisser, 2007). Groups in the private sector, and disease management schemes in particular, have led the way in implementing HIV/AIDS treatment by enlisting members onto treatment and providing treatment for opportunistic infections (pers. comm., L. Regensberg, clinical director, Aid for AIDS, South Africa, June 2007). The first realm of treatment to become more available was prevention of mother-to-child transmission of HIV (PMTCT) (Peacock, Budaza & Greig, 2008). Subsequently, this has led to some negative or emotive language being used in the health sector; examples include health workers referring to HIV-positive pregnant women as ‘suicide bombers’ (International Community of Women Living with HIV/AIDS [ICW], 2007; pers. comm., S. Hlope, director, SWAPOL, Swaziland, May 2008; pers. comm., N. Nkwe, advocacy officer, Bonela, Botswana, May 2008) and calls for proposals related to PMTCT entitled ‘saving unborn babies’
(Organization of African First Ladies Against HIV/AIDS, 2008). Eyakuze, Jones, Starrs & Sorkin (2008) eloquently argue that PMTCT as a strategy has not adequately considered HIV-positive women and that the emphasis has been on the unborn infant. They further suggest that given the rationing of treatment, some women have chosen to get pregnant in order to access HIV treatment; they also note that in some settings HIV-testing kits have been reserved for pregnant women only (Eyakuze et al., 2008). This can lead to HIV-positive women being viewed negatively or being unnoticed in PMTCT treatment programmes, and rather seen as instruments for potentially passing the virus to their infants. As HAART and PMTCT are still normalising as treatment processes within the continuum of care, this article explores gaps in particular services within a sexual and reproductive health and rights framework. It is argued that the particular maternal-health paradigm in which HIV treatment has taken place informs an approach to conceptualising treatment, care and support, which has limitations and acts as a barrier to addressing the epidemic. With the HIV epidemic having become feminised, and some 60% of infections in sub-Saharan Africa occurring among women (UNAIDS,
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2004; De Cock & De Lay, 2008), it is important to review the continuum of care1 available in both the public and private sectors. A key challenge is to address the need for HIV/ AIDS treatment guidelines for women of reproductive age (aged 15–45 years). I argue that this should be central to concepts of HIV prevention, which ought to affirm positive choices, as opposed to carried out as separate programming, which is often dominated by negative messaging on sexuality, similar to messages in the era of population control (United Nations, 1994). Currently, the ‘treatment page’ within the private and public health sectors does not contain a broad conceptualisation of women’s health. This article explores the notion of a broader concept of women’s health and so argues for a broader treatment continuum that fundamentally considers women’s health. Methods The qualitative analysis draws on two methodological frameworks: policy analysis (Walt & Gilson, 1994) and agenda-setting (Kingdon, 2003). The Walt & Gilson (1994) policy-analysis triangle presents a framework for exploring the context, content, processes and actors in the policy arena under investigation. In this methodology, those four areas are used to inform analysis by reviewing insights gained from studying a particular policy space. Policy processes often focus on content and ignore other vital areas. Kingdon’s (2003) idea of agenda-setting notes the multiple streams engaged in a policy space and allows one to explore the range of determinants at play, including problems, politics and policies. Data were collected through key informant interviews and by reviewing relevant literature, between March 2007 and June 2008. This included immersion in the field and participant observation in a range of processes and activities. A key process was the writing of the chapter on the private health sector in South Africa for the South African Health Review 2007 (Stevens, Sinovic, Regensberg & Hislop, 2007), text which identified a very limited continuum of care provided by disease management programmes with reference to women’s health. I also attended the January 2008 hearings on the Choice on Termination of Pregnancy Amendment Act and collated the review of sexual and reproductive health and rights indicators for the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) in a collaborative process with 20 organisations in South Africa (Stevens, 2008). This paper was previously presented at the 2nd Wits HIV/AIDS in the Workplace Symposium (Johannesburg, May 2008) and subsequently has incorporated insights and comments from those who participated in the sexual and reproductive health-and-rights session and roundtable. During the research period 38 interviews were held with a range of stakeholders involved in the area of HIV/AIDS and women’s health, including researchers, activists, health workers, trade unionists and HIV-positive women. Sampling was purposive. The interviews did not follow a standardised format but focused on the intersection of HIV/AIDS and women’s health. Field notes were kept. Emerging themes and issues were framed in the following policy-analysis
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categories: context, content, processes, and actors (as individuals and organisations) (according to Walt & Gilson, 1994). Themes were also noted within the agenda-setting model (after Kingdon, 2003), noting what dominated and what was viewed as important, and, equally illustrative, what was viewed as unimportant. Findings A limited disease management continuum A review of disease management programmes in the private sector and health services at a primary care level showed that HIV/AIDS services essentially incorporate HIV testing, HAART and PMTCT. Counselling is also provided. In the private sector counselling usually takes the form of information-giving by a nurse from a call centre, using a computer software programme where the items related to a client are ticked off (pers. comm., L. Regensberg, clinical director, Aid for AIDS, South Africa, June 2007). In contrast, there is inadequate counselling available in the public sector, and its quality is often disappointing (Brandt, 2008) or variable. Given human resources constraints, counselling has become a competency that has been task-shifted down to community health workers and HIV-treatment literacy practitioners, who are typically unregulated and under-remunerated, yet who provide a valuable service. With recent shifts in HIV-testing practices — from voluntary counselling and testing (VCT) to provider-initiated testing — pre-test counselling is often under pressure and thus the emphasis often shifts to post-test counselling. Those who are unprepared for an HIV-positive test result — particularly women — can be subjected to abuse from partners, families and communities (Bell, Mthembu & O’Sullivan, 2007; Eyakuze et al., 2008; Kehler, 2008). This has deterred women from using services since they realise that they might be subject to HIV testing when they are not prepared for a positive diagnosis (Kehler, 2008). Hence, there is a need to carefully consider HIV-testing practices and to ensure that they enable women’s access to care. There are clear gaps in other key health services for women. Sexually transmitted infections (STIs) are not dealt with in the continuum of care. Within the private sector, disease management programmes generally fail to deal with this issue. Stevens et al. (2007), in considering STI treatment in the private sector, reviewed the research and literature produced by the Centre for Health Policy (Johannesburg), which revealed the inadequacy of treatment. Patients seek privacy and believe that they are getting good care; however, treatment is often dependent on what patients can afford to pay (Stevens et al., 2007). Treatment for STIs does not include screening for violence against women, and thus not screening means that there is missed opportunity for appropriately referring women or for counselling them about their rights. Violence against women is also not dealt with clearly within the continuum of HIV/AIDS services within the public and private health sectors (Jacobs, 2008; Meerkotte, 2008). Given that violence against women is endemic in the region, with some 40% of women reporting contact sexual abuse before the age of 18 years (Jewkes & Christofides, 2008) and their limited ability to negotiate safer sex, this
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should be part of the continuum of care, with health workers being better informed of developments within the legal and political processes concerning sexual assault. Women’s mental health problems (particularly depression) are also frequently undiagnosed and untreated within HIV care services (Brandt, 2008). One especially pertinent time is the antenatal to postnatal period, during which time women are also likely to come into contact with public health services, with consequent opportunities for treatment and care. Cervical cancer associated with the human papilloma virus (HPV) is more common in HIV-positive women and is viewed as an opportunistic infection. Currently, screening for it in the form of PAP smears is ineffective. Patients in under-resourced areas have limited options for cervical cancer treatment (Cancer Research Initiative of South Africa [CARISA], 2008). With the recent registration of cervical cancer vaccines in South Africa, which are believed to be 80–100% effective for HPV-16 and HPV-18 (the main virus types viewed as a precursor to cervical cancer) there is a need to explore implementation of immunisation as a prevention strategy. Women on HAART can still die of cancer of the cervix (Asheber, Mashego, Kharsany, Walldorf, Frohlich & Abdool Karim, 2007; Thomas, 2008). The private sector could take the lead in providing care to dependants and in sponsoring schools linked to workplaces in mining areas by providing HPV immunisation. The treatment of STIs, violence against women, post-natal depression, screening and vaccination for cervical cancer are important features to integrate into the continuum of HIV/AIDS care. This is applicable to disease management programmes within the private sector and it also applies to integrating sexual and reproductive healthcare and HIV care in the public sector. A review of Aid for AIDS (AfA), the longest-running disease management programme (DMP) in South Africa (which has the largest number of people enrolled in the private sector), identified a number of gaps in the programme. It is evident that women are the main client base of this DMP, constituting approximately 61% of enrolees on the treatment programme, with about one-quarter of them being pregnant. Some 74% of AfA clients are aged 25–45 years, which covers the main reproductive period. In 2007, AfA had no procedures or guidelines in place for HIV-positive women wanting to have a child. Although options should be available for an HIV-positive woman wanting to have an abortion, this would not be part of the continuum of HIV/AIDS care and would need to be covered in terms of the routine benefits of a medical scheme. Yet the programme has a large focus on PMTCT. Most DMPs in South Africa would have a similar approach (Stevens et al., 2007). Choice and intentions: invisible processes A key gap in the disease management continuum is the area of sexual health, fertility and reproductive intentions. A woman who is HIV-positive can be assisted to ensure that her baby is born HIV-negative. However, the process of discussing her intentions to become pregnant is generally stigmatised. HIV-positive women who feel well on treatment and who would like to have a baby are not generally viewed
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as part of the continuum of care (De Bruyn, 2004 and 2006). Attitudes similar to those held in the era of population control are pervasive in that they generate judgemental and stigmatising attitudes, within all communities. A study reviewing reproductive intentions noted that most respondents (men and women) had not discussed their reproductive intentions due to anticipated negative reactions; those who had, found the counselling environment unsupportive of the open discussion needed to inform clients’ decision-making (Cooper, Harries, Meyer, Orner & Bracken, 2007). It was also noted that those women who desired to get pregnant wanted to ensure their own access to treatment, and not just receive treatment for their babies. These findings have been echoed in health workers’ harsh attitudes about negotiating care regarding choices they would like to make in wanting to become pregnant (De Bruyn, 2006; Bell et al., 2007). Importantly, it must be remembered that women have the right to choose to have an abortion (De Bruyn, 2006). These concerns have been articulated in a South African civil society press release on sexual and reproductive health and rights indicators (Stevens & De Vos, 2008) and in a position statement by southern African civil society (SafAIDS, 2008), both of which were released in preparation for the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) meeting in June 2008. Some 50% of all pregnancies are unplanned (World Health Organization [WHO], 2006; Gipson & Hindon, 2008). Women have sex that is negotiated and involves safer sex, and they also have non-negotiated sex. There has been a significant focus on barrier methods of safer sex, with a large investment in condoms, although limited investment has been made in female condoms (Brink, 2008). It is insightful to explore the context in which HIV prevention has taken place: notably, barrier methods are different from contraception, in that barrier methods have the dual role of preventing both HIV transmission and pregnancy. Pregnancy choices are not generally on the agenda, whether planning a pregnancy or negotiating a termination. There needs to be discussion of contraception within the continuum of care and an acknowledgement of the choices available to clients. With the recent implementation of the Public Finance Management Act, contraception provision was discontinued in tertiary healthcare facilities in South Africa because it was viewed as a competency of primary healthcare (Mhlanga, 2008). As a result, a large proportion of clients who previously obtained contraception at a tertiary-care facility then had to take time off work and queue to obtain services at the level of primary care. However, the decision to discontinue contraception provision was more recently reversed (Mhlanga, 2008). Emergency contraception is not well understood or widely implemented and not readily available in all settings. Some clinicians complain that clients abuse emergency contraception. However, Abuabara, Becker, Ellertson, Blanchard, Schianvon & Garcia (2004) conclude that it is safe to use repeatedly, and that concern should rather be directed at situations when contraception is not used every time that it is needed. The best choice of contraception for those who are HIV-positive is not well understood (De Bruyn, 2006;
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WHO, 2006; Coll, Lopez & Hernandez, 2008). It has been suggested that women on HAART should use hormonal contraception with caution (Coll et al., 2008). Similarly the Department of Health and Human Services (DHHS) in the United States notes that the interactions of HAART and TB drugs (e.g. rifampicin) and hormonal contraception alter the bioavailability of the contraceptive drug and essentially cause a reduction in the effectiveness of the contraception (Department of Health and Human Services [DHHS], 2008). The impact of the progesterone-only injectable is unknown. There is also limited data to suggest that hormonal contraception may increase disease progression in people with HIV infection (Baeten, Lavreys & Overbaugh, 2007; Stringer, Kaseba, Levy, Sinkala, Goldenberg, Chi et al., 2007). Earlier studies suggested that an association between use of intrauterine devices (IUDs) and genital tract infections (Teal, 2007). The World Health Organization does not recommend IUDs for women who have AIDS and are not on HAART (WHO, 2006). Most of these studies have been conducted in well-resourced settings and so it is difficult to interpret their findings in the context of southern Africa — in a context of developing health systems, implicit rationing and inequity. There is a need for more research to inform this area of concern.
HIV/AIDS treatment guidelines for women of reproductive age: more than just the content Existing guidelines Given an HIV pandemic that is feminised, HIV/AIDS treatment guidelines are an emerging issue. In January 2008 the US Department of Health and Human Services published a 127-page guide entitled Guidelines for the Use of Antiretroviral Agents in HIV-1-infected Adults and Adolescents, devoting two paragraphs to the topic of women of reproductive age; the guidelines suggest that “in women of reproductive age, antiretroviral regimen selection should take account of the possibility of planned or unplanned pregnancy. The most vulnerable stage in fetal organogenesis is early gestation, often before pregnancy is recognised. Sexual activity, reproductive plans, and use of effective contraception should be discussed with the patient” (DHHS, 2008, p. 47). The WHO guidelines entitled Sexual and Reproductive Health of Women Living With HIV/AIDS — Guidelines on Care, Treatment and Support for Women Living With HIV/AIDS and their Children in ResourceConstrained Settings (WHO, 2006) begin to address these issues conceptually and they suggest possible treatment options, yet the guidelines are tentative and exploratory, rather than explicit. Within South Africa, specific treatment for women of reproductive age is not addressed in the Guidelines for the Management of HIV and AIDS in Health Facilities (Department of Health, 2008), the guidelines of the Southern African HIV Clinicians Society (2008), or the Treatment Action Campaign’s (TAC) commentary on the draft 2008 Department of Health Management of HIV Guidelines (TAC, 2008a). Thus, two groups that have led comment on HIV/ AIDS treatment in South Africa have not interrogated this issue thoroughly.
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Some HAART contra-indicated in pregnancy Currently the first-line HAART regimen used for women contains efavirenz. The new first-line regimen to replace D4T (stavudine) will include tenofovir (Department of Health, 2008). Efavirenz is contraindicated in pregnancy and is listed as a category-D drug by the DHHS, meaning that it is seen as teratogenic and that there is positive evidence of human foetal risk. Tenofovir is listed as a category-B drug, suggesting that animal reproductive studies have failed to demonstrate a risk to the foetus, but that adequate studies of pregnant women have not been conducted. There are concerns regarding tenofovir in terms of area under concentration (AUC) in pregnancy, yet a greater challenge is the evidence in animal studies of reduced foetal growth. The DHHS (2008) suggests that because of the lack of data on use in human pregnancy and concern regarding potential foetal bone defects, tenofovir should only be used as a component of a maternal combination-regimen after careful consideration of alternatives. Tenofovir is currently not registered for use in children and the DHHS (2008) guidelines clearly suggest that it is not a good choice for a woman of reproductive age. HAART and preventing pregnancy In protests by treatment advocates in South Africa which led to the registration of tenofovir, HIV-positive women activists commented that they were keen to have D4T replaced with tenofovir, because they were ‘losing their figures’ on D4T. This comment referred to the D4T side effect of lipodystrophy, causing a ‘tummy tyre’ and thin arms and legs. While lipodystrophy is of concern, the fact that activists were aware of this side effect but not aware of the risks of tenofovir for pregnancy is pertinent. In exploring similar issues at a meeting in December 2007 with the International Community of Women Living with HIV/AIDS (ICW) (2007), it became evident that there were reports that women in South Africa and other southern African countries were receiving injectable contraceptives, together with a HAART regimen, to ensure that they would not become pregnant. In-depth discussion revealed that women were counselled to not become pregnant, and also that they had varying understandings of the side effects of treatment. Some reported that they had realised only later that the injection they were receiving was a contraceptive, and so this had not been their informed choice. De Bruyn (2006) reported similar findings, noting some antiretroviral treatment programmes require women to use providerdefined contraceptive methods to be eligible for treatment. Such coercive use of contraceptives could be likened to paternalistic population-control measures that take charge of women’s fertility by withholding information from clients. HIV-positive women choosing to get pregnant As argued above, most literature and guidelines for HIV/ AIDS treatment address pregnant women (not women in general), and the underlying intention is to reduce HIV transmission from a mother to unborn infant. Eyakuze et al. (2008, p. 36) state: “While comprehensive in theory, in practice, PMTCT programs have tended to focus on the third component of the strategy. The intersection between
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HIV and pregnancy exposes the ethical and legal inequalities inherent in a societal structure that places more value on a woman’s reproductive capacity than her own individual wellbeing.” This situation has led to a missed opportunity for serving the needs of women who choose to get pregnant while HIV-positive. There are also missed opportunities to help women who are pregnant and who would like to have an early abortion (De Bruyn, 2004). A woman can choose to be pregnant and then negotiate HIV-treatment options to avoid vertical transmission, but the healthcare processes involved in planning pregnancy and being pregnant (and leading up to the second and third trimesters) are not provided for. In reviewing literature on the effects of unintended pregnancy on infant, child, and parental health, Gipson & Hindon (2008) note that there are clear areas for consideration that should inform a better continuum of HV/AIDS care. They note that women who have unintended pregnancies do not breastfeed as much as those who have planned pregnancies. Recent findings suggest that exclusive breastfeeding for the first six months is a better option in resource-poor settings (Coutsoudis, Coovadia & Wilfert, 2008), and this highlights the need to provide women with clearer choices. Women with unplanned pregnancies also have a greater risk of maternal depression than those who intentionally become pregnant (Gipson & Hindon, 2008). This suggests that processes of client counselling which support clients’ fertility intentions would contribute to better health outcomes. Positive choices in treatment There are different HAART-regimen options for women of reproductive age. Research presented at the International AIDS Conference in Mexico, in August 2008, suggests options for treatment regimens appropriate for pregnancy (Roberts, Martinez, Covington, Pasley & Woodward, 2008). Such evidence needs to be explored and translated by a multidisciplinary team to create HIV/AIDS treatment guidelines for women of reproductive age. The development of such guidelines may not be taking place because HAART is seen as gender neutral, and there is a substantial backlog of people needing but not yet on treatment. There is a failure to acknowledge that the condition of people on treatment improves, and conversations about clients’ desires to have children are frequently overlooked by clinicians (Averitt Bridge, Hodder, Squires, Aberg, Abrams, Storfer & Feinberg, 2008). Donors to both public sector and private sector health programmes have particular views of women’s health, which have been restrictive. Efforts to redress this and to establish a comprehensive and integrated HIV-prevention strategy to address the vulnerabilities of women and girls to HIV infection would include abolishing the requirement from some funders that one-third of all HIV-prevention funding be spent on abstinence-untilmarriage programmes (PEPFAR Watch, 2008). Essential actors: health workers There is a tacit belief that those who are HIV-positive should not have children. Such discriminatory and stigmatising attitudes are pervasive, and they are a barrier to women
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being able to discuss their fertility intentions with healthcare workers (De Bruyn, 2006; Bell et al., 2007; Cooper et al., 2007). Given the huge burden of HIV care for health workers and the challenges of limited human resources, health workers require ongoing education and increased support and supervision. Health workers within the private and public health sectors should be aware of a suitable first-line regimen for HIV-positive women of reproductive age. They should offer time to assist clients with decision-making in regard to their fertility intentions. Such a dialogue would welcome discussion, be non-directive, and provide neutral non-judgemental information that is affirming of clients’ preferences. HIV-treatment guidelines should be nuanced and individualised. In contrast, there is already a culture of community treatment literacy, in the form of treatment practitioners and peer supporters, and ordinary men and women who have gained treatment literacy through experience with complex HAART regimens (TAC, 2008b). An HIV/AIDS-treatment regimen for women of reproductive age may be more complex than existing first-line regimens, and, initially, possibly more costly. Such a regimen will surely challenge existing beliefs. However, it is imperative to consider the consequences of not providing HIV/AIDS treatment for women of reproductive age and which embraces the individual’s choice to have children. Given that some 50% of pregnancies are unintended, it would be good practice to address the topic of fertility intentions among persons with HIV infection. If these issues are not addressed, there may be consequences for treatment adherence and drug resistance (ICW, 2007). Enforced contraception for HIV-positive women is a bad practice in myriad ways in terms of legal infringements and missed opportunities of care (pers. comm., N. Ntlokwana, attorney, Women’s Legal Centre, South Africa, March 2008). Meanwhile, women are becoming pregnant while HIV-positive, suggesting that they are acting on their own fertility intentions without the support of healthcare providers (ICW, 2007). The prevention, control, choice continuum Efforts to address the HIV epidemic are informed by various prevention paradigms, processes and activities. Given the devastating spread of an epidemic that has sex as its central normative activity, HIV prevention is a great challenge. Most HIV prevention activities focus on limiting sexual activity as evidenced by the ‘ABC’ strategy (abstain, be faithful, use condoms). During 2007, the public sector in South Africa distributed 11 male condoms per male aged 15 years or older (Barron, Day & Monticelli, 2007). This was a considerably higher rate of distribution than was carried out for female condoms, for which distribution is underfunded and inequitable (pers. comm., F. Nicolson, director, Thohoyandou Victim Empowerment Programme, South Africa, May 2008). Unequal gender relations and the inherent lack of choice that women have in negotiating sex and safer sex make current HIV-prevention messaging unlikely to succeed. The HIV-prevention paradigm is negative insofar as it seeks to limit and control sexual practice. Language that
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informs HIV prevention is also negative insofar as it may refer to ‘stopping, avoiding, standing in the way.’ The language of HIV prevention is also unfortunately related to the language of contraception and family planning, which many clients also colloquially refer to as ‘prevention.’ There is a conceptual gap in HIV/AIDS treatment reminiscent of the era of population control, in that it does not affirm women’s own choices or allow them full control of their fertility. In 1994 the International Conference on Population and Development (ICPD), in Cairo, changed the populationcontrol agenda, informed by clear research data indicating that women empowered with information could make more informed life-affirming choices to determine their future, and that development (housing, water and education) was also a key issue affecting women’s health (United Nations, 1994). In a similar fashion, giving women choices that reflect their fertility intentions, and that are consistent with HAART treatment regimens, could contribute to better health outcomes. The lack of appropriate, well-articulated HIV/AIDS treatment guidelines for those most in need of treatment and for groups with relatively high prevalence (e.g. women of reproductive age) indicates an important shortcoming in both the public and private health sectors. For HIV prevention to work better, we need to affirm women’s wellbeing and provide them with better choices. Women need to be provided with a continuum of care that takes into account their sexual and reproductive health and fertility intentions. All women (those with HIV infection or those without) need to be empowered to make informed choices to get pregnant, to terminate pregnancy, or to have a healthy pregnancy and infant. There is a need to move away from a maternal-health paradigm and away from conceptualising HIV treatment for women as mothers only. Conclusions This investigation has outlined how a policy of HIV/AIDS treatment guidelines for women of reproductive age involves much more than content. It has revealed the complex and contested context in which treatment is taking place and notes the influence of the actors and processes at play. As an actor, the private sector and disease management schemes have taken a lead in providing treatment, although HIV/AIDS-treatment regimens for women of reproductive age remain inadequate. There is a need to interrogate the broad failure to integrate women’s health and HIV/AIDS care, given that we have a feminised HIV epidemic with women of reproductive age at its centre. Women are being provided with HIV/ AIDS treatment in a limited continuum of care that does not engage with and fully explore the breadth of women’s health issues. It is suggested that adopting a more comprehensive approach could contribute to HIV-prevention efforts as women gain confidence that they are respected and able to make choices regarding their bodies. Similar to the turn-around in the population-control paradigm, this may facilitate women’s development, empowerment, and ability to take responsibility for controlling their reproduction and for negotiating safer sex. There is a need to afford women
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choices and to move away from a maternal-health paradigm to one that embraces sexual and reproductive health and rights and specifically women’s health. The development of appropriate guidelines for HAART for women of reproductive age would be a significant contribution. Will the private sector, disease management schemes or workplaces take the lead again? Notes 1
The concept of ‘continuum of care’ refers to a comprehensive and integrated approach to care, which has a seamless system involving places to obtain care, and a full range of particular services matched with different service providers and levels of care.
Acknowledgements — Thanks are extended to Maria de Bruyn (Ipas), Courtney Sprague (Wits Business School), and Johanna Kehler (AIDS Legal Network) for their comments. The author — Marion Stevens has a background as a health worker and in social anthropology and public and development management. She does research, policy work, and advocacy in the area of women’s health and HIV/AIDS. Currently she is the Project Manager of the Treatment Monitor at the Health Systems Trust and is based in Cape Town.
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