Towards an HIV-free generation: getting to zero or getting to rights?

“[We] ask the scientific arena to appeal to the actual lived experience of women; whether to have children is among one of the most sacred, emotional and private decisions that at-risk and HIV-positive women must make.” ¹

We the authors of the following commentary, as women with HIV from around the world, have personal experience with the issues contained in this special edition of Reproductive Health Matters. We welcome the special edition, especially the language of its title, which explicitly establishes a norm of openness, possibility and positivity. We contend that the work of policy makers, practitioners, donors and academics needs to incorporate a human rights-based, holistic view of what pregnancy, motherhood and HIV mean for women and children alike, and our hope is that the articles in this publication will inform this work accordingly.

We are extremely concerned about the overall policy direction the global response to HIV and pregnancy has taken of late. Approaches to prevention of mother-to-child transmission (PMTCT) – or vertical transmission – of HIV are inextricably connected to how the sexual and reproductive health and rights of women living with HIV are understood. Yet too few policy makers seem to grasp either this connection or its implications. In the following commentary, we explain why this is prob lematic and, as an example highlighting our concerns, discuss the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive. A UNAIDS-convened task team formulated the Global Plan, which was formally launched at the June 2011 United Nations General Assembly High Level Meeting on AIDS.²

With UNAIDS looking to the Global Plan as the new centerpiece of its response to PMTCT, we are concerned that the document will influence the architecture of national responses to HIV and AIDS in significant ways. The Global Plan provides a country-level implementation framework that UNAIDS is calling on governments to integrate into larger health and development frameworks, with clearly defined targets and milestones that prioritize some issues at the expense of other issues long considered important to women with HIV. Major global funders of the HIV response, such as the US President’s Emergency Plan for AIDS Relief and the Bill and Melinda Gates Foundation, greeted the unveiling of the Global Plan with announcements that they would support it through larger investments in PMTCT, further securing the document’s place as the primary global policy guidance in this realm through 2015.

Although we welcome the Global Plan’s ambitious central goals of achieving a 90% reduction in new acquisition of HIV among children and a 50% reduction in AIDS-related maternal deaths, as well as the declared need for “women living with HIV at the center of the response,”² we submit that the approach is flawed. After first introducing the Global Plan’s program framework, we then outline our major concerns about this framework and about the approach overall. We conclude with recommendations for how to more effectively meet the aspirations, needs – and rights – of women and children in relation to pregnancy, motherhood, sexuality, HIV, and sexual and reproductive health.

The structure of the Global Plan

The Global Plan puts forth a four-pronged strategy for the program framework that it envisions as the foundation for country implementation plans²:

•	“Prevention of HIV among women of reproductive age within services related to reproductive health such as antenatal care, postpartum and postnatal care, and other health and HIV service delivery points, including working with community structures.”
•	“Providing appropriate counseling and support, and contraceptives, to women living with HIV to meet their unmet needs for family planning and spacing of births, and to optimize health outcomes for these women and their children.”
•	“For pregnant women living with HIV, ensure HIV testing and counseling and access to the antiretroviral drugs needed to prevent HIV infection from being passed on to their babies during pregnancy, delivery and breastfeeding.”
•	“HIV care, treatment and support for women, children living with HIV and their families.”

After introducing the framework, the plan goes on to discuss issues such as leadership, resource mobilization and accountability in considerable detail, as well as proposing specific country implementation actions and targets.²

The Global Plan’s shortcomings

What is perhaps most disappointing to those of us who welcomed recent progress in other international fora^3,4 is the Global Plan’s narrow focus on disease prevention rather than on a holistic right to health for all concerned. Its overall focus is on perinatal HIV prevention, rather than on an affirmation of health, autonomy, life and rights for all, women and babies alike. There is also a distinct failure to reflect adequately the role that gender inequality plays in the HIV pandemic. A key issue is women’s relative lack of control over when, with whom, how and how often we have sex, and whether or not we (can choose to) become pregnant. The Global Plan also fails to recognize that those most concerned – and, with the right support, those most able to keep children free of HIV – are their primary carers, i.e. their mothers. Another key issue is the distinct lack of recognition that the full spectrum of women’s reproductive and sexual health needs and rights extends far beyond the need for family planning and antenatal care services.

What is missing from the Global Plan, but is thankfully present in at least some aspects of the global dialogue, becomes more apparent when one considers two other significant developments in 2011. Early that year, UNAIDS and two other United Nations agencies convened a high-level consultation on the sexual and reproductive health and rights of women and girls living with HIV. Main messages agreed upon by meeting participants included the following³:

•	“Violation of the sexual and reproductive health and rights of women and girls living with HIV is unacceptable and counterproductive.”
•	“Women and girls living with HIV require access to quality, gender-responsive, integrated HIV and sexual and reproductive health and rights services.”

Furthermore, the June 2011 UNGASS Political Declaration on HIV/AIDS discusses gender equality; access to sexual and reproductive health services; and women’s empowerment and economic independence. Signatory states “recognize that access to sexual and reproductive health has been and continues to be essential for HIV and AIDS responses” and “pledge to eliminate gender inequalities and gender-based abuse and violence.” They also “commit to ensuring that national responses to HIV and AIDS meet the specific needs of women and girls, including those living with and affected by HIV, across their lifespan, through… measures for the promotion and protection of women’s full enjoyment of all human rights.”⁴

The Global Plan makes scant reference to these issues, which are at the core of our existence. While there is some acknowledgment of gender-related stigma and discrimination, the document does not highlight abuse and violence as concerns, and it contains only one mention of the rights of women living with HIV.²

The Global Plan also fails to acknowledge that, as women with HIV, we face dangerous trends such as the increasing criminalization of HIV transmission, which has complex implications in relation to pregnancy.⁵ For instance, in Sierra Leone, women with HIV were at risk of being jailed for up to seven years for transmitting HIV during childbirth until a proposed law was rescinded under international pressure.⁶ In Guinea, Guinea-Bissau, Mali and Niger, a mother can be criminally charged for not taking steps for “PMTCT.”⁷

Importantly, such examples are not unique to the Global South. In 2009, a US judge sentenced a woman who was HIV-positive, pregnant and an unauthorized immigrant to 238 days in jail for possessing false documents, a far longer sentence than warranted. The sentence was based entirely on the woman’s HIV status, the judge explained, claiming that it was intended to protect the unborn child rather than to punish the woman. The judge asserted that the woman would be more likely to receive medical treatment and follow a drug regimen in prison than she would if she were either free or in the custody of the immigration service.^8,9 Over half of US states have HIV criminalization laws, many of which are so shockingly broad that a zealous prosecutor could charge a woman living with HIV with a crime – attempted transmission of HIV – if she did not follow her doctor’s care recommendations during pregnancy.⁸

Another dangerous trend has been an increase in mandatory HIV testing, for instance as a pre-condition for marriage and for access to antenatal care.^10,11 Some of us have seen this ourselves, in Ministry of Health information leaflets in antenatal clinics, with the leaflets containing no reference to HIV testing being voluntary (for instance in Kampala, Uganda in 2009). Testing should never be mandatory because mandatory testing for HIV is not only unethical, but contrary to public health and human rights goals.¹² Mandatory testing for women during pregnancy is also worrisome because it can exacerbate stigma and discrimination against women and their children. There is already clear evidence from different settings of abusive attitudes and behavior on the part of untrained health staff, if women who are pregnant test positive for HIV.¹³ Abusive staff can make access to antenatal care conditional upon an HIV test, which is also unethical. Furthermore, there is the potential for failure to maintain confidentiality about test results which will further compound these harms.^14–16

Indeed, the Global Plan does not refer to the conditions that the World Health Organization, in its guidelines, says health facilities should meet when providing HIV testing services.¹⁷ Most notably the words “voluntary” and “confidential” do not appear anywhere in the Global Plan, implying they are no longer fundamental to quality of care.

The historic and public health significance of voluntary and confidential HIV testing for women – and for all people – is immense. Public health evidence and human rights norms have long established voluntary engagement and confidentiality as fundamental aspects of HIV testing and counseling.¹⁸ Adherence to these principles is of paramount importance, both because of the magnitude of the stigma associated with HIV and because of the need to promote uptake of HIV testing which, as the gateway to many services, is an integral component of the global HIV response. We cannot afford to see women avoiding antenatal care services because they fear being forced to have an HIV test, being given HIV-positive test results in unsupportive ways and enduring abusive behavior from health staff.¹³ Women may also fear the consequences of a lack of confidentiality regarding HIV test results, including consequences in the home such as gender-based violence. Pregnant women who avoid accessing antenatal care for these reasons may include women who are actually HIV-negative. Many HIV activists, including women living with HIV, have fought long and hard to make the twin principles of testing being voluntary and confidential a cornerstone of the global response to HIV. The exclusion of these principles from the Global Plan thus reverses important public health and human rights progress – and threatens to undermine efforts to reduce maternal mortality rates.¹⁹

Discussion

We view the shortcomings of the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive as indicative of what is wrong with the more general policy and programmatic direction of the international community’s efforts to address the interplay between pregnancy, motherhood, HIV and the sexual and reproductive rights of women with HIV. The content of the Global Plan, as well as its name, highlights a focus that is increasingly narrowing towards our roles as mothers, at the expense of recognizing us as full human beings. It would have been helpful, for instance, for the Global Plan to address the critical importance of keeping women with HIV who are having babies healthy and happy, not just alive. Yet this is the key ongoing struggle between the two silos of “keeping babies alive” and “women’s rights” – as if the two were not inextricably connected and indeed mutually interdependent.

Admittedly, the Global Plan is not intended to cover all issues of relevance to our lives; the overall goal is described early in the document as “reaching pregnant women living with HIV and their children – from the time of pregnancy until the mother stops breastfeeding.” The sentence after that notes, “Prior to pregnancy, and after breastfeeding ends, HIV prevention and treatment needs of mothers and children will be met within the existing continuum of comprehensive programs.”²

Yet placing such parameters around this landmark global initiative is precisely the problem we wish to signal. We question whether existing HIV services in the majority of hard-hit countries worldwide are adequately meeting women’s aspirations and needs outside of the time around delivery and recognize this as a significant ongoing concern. But the larger issue relates to how the Global Plan and its implementation are being conceptualized. By framing the proposed approach to HIV and pregnancy as it does, the Global Plan – in keeping with the discourse that continues to characterize this realm, in spite of our protests – perpetuates the view that, as women, we are only important during the perinatal period, and only in relation to our children’s health. The overwhelming focus on vertical transmission in the literature on women and HIV reflects the devaluation of women and our health except as it affects our roles as reproducers and as transmitters of disease.

We understand the Global Plan to be linked to the approach taken by the World Health Organization’s April 2012 programmatic update revising antiretroviral treatment guidelines for pregnant women.²⁰ The new guidelines indicate that PMTCT programs are likely to fare better with the second of two alternatives provided in the 2010 guidelines, “Option B.” They further suggest that it may be pref erable for PMTCT programs in many settings to introduce “Option B+” – starting pregnant women on lifelong antiretroviral treatment as soon as they are diagnosed, regardless of CD4 count. While we appreciate the good intentions of Option B+, we also remain concerned. Starting treatment – especially for life – when not necessarily needed again raises issues around the options available to women and how these decisions are being made for them instead of with them. Again, there is no mention of voluntary or confidential testing in the programmatic update. Adherence is a huge issue, both in terms of the danger of health system stock-outs in some settings and in terms of an individual’s psychosocial readiness for such a step. Potential long-term complications and side-effects of antiretrovirals must also be considered.

Vitally important issues in our lives are increasingly pushed to the margins. In addition to the issues named above, these include stigma and discrimination against women with HIV who wish to have children;²¹ the coerced sterilization of women with HIV;²² and lack of access to safe abortion services for women with HIV.²³ Adequately addressing the complexities of family planning in the context of HIV has always been challenging.^24–29 The implications for our sexual and reproductive lives are even more pronounced, now that research findings have reawakened concern about the potential for hormonal contraception to increase the risk of HIV transmission.^30,31

Recommendations

We call for a complete reframing of the global approach to HIV and pregnancy within the context of our sexual and reproductive health and lives more broadly: one that rejects current trends in favor of recognizing that as women we are autonomous decision-makers. We therefore call for the following specific steps to be taken.

•	Globally: We need explicit attention to the gendered and human rights dimensions of HIV prevention, treatment and care as critical for women – and for infants. This is recognized in some United Nations and World Health Organization documents3,4,32–34 but remains alarmingly absent from the Global Plan. Given the reference to women’s human rights in the Preamble of the Global Plan, global and national efforts under the auspices of the Global Plan must acknowledge and address the specific human rights dimensions of each of the four prongs of prevention of vertical transmission in their policies and programs. This is one concrete way in which the Global Plan approach could remedy its previous lack of attention to these critical issues.
•	In national responses: We need to ensure that national strategic plans recognize and address the parallel pandemics of HIV and gender-based violence,35 and that they actualize the meaningful involvement of women and girls living with HIV, in all our diversity, as a central component of an effective response.36 Furthermore, men and boys need to be included in an effective national response because they are gate-keepers of women’s access to rights, because they are fathers of children, and because gender inequities, stigma and discrimination affect them adversely as well.37
•	At the community level: With clear evidence for the reciprocal links between gender-based violence and HIV, programs that jointly address these issues while also addressing the major gate-keeping role that men play as “social determinants of women’s health”38 need to be funded and scaled up, in order to both reduce new cases of HIV among women and to reduce the number of unwanted pregnancies and the gender-based violence experienced by women who already have HIV.39 Women’s financial independence and child custody in violent relationships also need to be addressed. A lack of earning capacity often causes women to fear leaving violent relationships, and another deterrent for these women is concern about the safety of children they may be forced to leave behind.40
•	In the service provision realm: Despite widespread agreement that multisectoral approaches are required,41 these have been underfunded, and there have been limited linkages or cross-referral between health, social, financial and legal services for women affected by HIV. For example, it may be obvious that training and referral systems linking the police, social workers, health centers, solicitors and women’s refuges could promote and enhance responses to intimate partner violence experienced by women with HIV. Yet no formal evidence base for this appears to exist, and thus in practice such interventions are rare.
•	In the research realm: Four important components of the research agenda must be given greater attention. The first is the safety of hormonal contraceptives in the context of HIV.30,31 We welcome the World Health Organization’s efforts to meaningfully include women in this effort, and seek to ensure that the needed research is appropriately funded and carried out to expand our understanding of HIV risks. The second research issue we wish to signal is microbicide research. CAPRISA42 was a huge breakthrough, but where is the ongoing funding? What can be done to support the development of microbicides for women with HIV? Women with HIV need both vaginal and anal microbicides as much as other women. We need them in order to enhance our sex lives; to reduce the risk – and our fears – that we may pass on HIV or other sexually transmitted infections to partners; and to protect ourselves from repeated exposure to HIV or other sexually transmitted infections.43 Thirdly, more research is needed on antiretroviral treatment Option B+.20 Women need access to efficacious antiretroviral regimens. While data regarding the safety of efavirenz in pregnancy are reassuring, there is still no real certainty that efavirenz is the best option for women who are pregnant.44 Finally, operational research is needed to further explore the feasibility and safety of couples HIV counseling and testing as an additional HIV testing option.45 For research to be successful, it is essential that women with HIV are involved in all aspects of study design, implementation and evaluation.

We furthermore urge researchers – including the authors and readers of the articles in this supplement – to be mindful of their positions of power in relation to these issues. Decisions about where to focus and how to frame inquiries potentially have major implications for women with HIV and their children. Isolation, discrimination and poverty often prevent women with HIV from con tributing to the formal evidence base, creating even more of an imperative for researchers to act responsibly. Ultimately, what is recognized to be the “evidence base” sufficient to determine research, policy and programming directions must systematically address the experiences, aspirations, needs and rights of women with HIV.

Conclusion

In conclusion, the Global Plan is essentially the culmination of many years of global policy work around “saving babies,” much of which has had a distinctly hostile attitude towards women with HIV who wish to fulfill the desire for motherhood, who need adequate support to enable informed and responsible choices – and who have the right to make and carry out these choices.⁴⁶ Ever since the beginning of the HIV pandemic, when it was falsely assumed that women with HIV must be sex workers, users of drugs, having sex outside of marriage,⁴⁷ or otherwise breaking fairly universal social mores, women with HIV have been added to the silo of women who have, for millennia, been unfairly judged unfit for motherhood and who have had edicts of enforced asexuality thrust upon us.^48–51 The Global Plan has been widely heralded as the new roadmap accompanying the political clarion call for the “AIDS-free generation.”⁵² It could be argued by some that it is convenient to focus on keeping babies HIV-free in order to avoid the religious and political landmines associated with promoting contraceptive use, including condoms, and access to safe and legal abortion. It is the safe cozy option, the simple end of the messy real world that HIV inhabits, “saving the innocent babes,” which no-one will dispute.

What disturbs us greatly are the deeply entrenched assumptions underlying such policies and practices. For example, there are those who discuss the Convention on the Rights of the Child⁵³ on the one hand and the Convention on the Elimination of Discrimination against Women⁵⁴ on the other – as though they were an either/or proposition. It is as if women living with HIV who are claiming our sexual and reproductive rights are just acting willfully and irresponsibly, brazenly hell-bent upon having our cake and eating it, irrespective of the health consequences for our children. Somehow they are forgetting that those who are potentially best placed to keep babies and children HIV-free, are also those who most dearly wish to do so –namely their mothers⁵⁵ – women with HIV. It is also somehow overlooked – or just considered as an afterthought – that every child deserves a mother,⁴⁹ and that the best way to keep a child alive, healthy and happy is for its mother to be alive, healthy and happy.^51,56

The key ingredient missing from all of this is how to give women living with HIV the best support we need throughout the process (if and when we choose to fulfill the role of motherhood).

A Global Plan that recognizes these principles would place the care, respect, support and appropriate treatment for a woman with HIV, wishing to have a child, front and center of its focus. Such a plan would build on and ensure funding for existing programs that have already been initiated by women with HIV themselves (programs on the brink of collapse for lack of funding, despite the enormous popularity and trust they have engendered among those involved).^57–59

Further, such a plan would have the full care “elements” of “keeping the mother alive.” These elements would include the full range of information about, and access to, condoms and other contraceptives to avoid unplanned pregnancies. It would also emphasize that women with HIV want to know that when they go for perinatal care, they will also be able to have pap smears, tuberculosis screening, treatment for other conditions and related services, including access to comprehensive information on infant feeding, all in the same center. This and so much more could and should be done to promote and enhance the possibility of keeping us alive and well – and in so doing, also enhance the possibility of our children remaining HIV-free. Such a plan would also recommend full access to safe and legal abortion. Finally, it would endorse policies and practices that ensure that if women wish to have a baby, we would feel safe to accept the voluntary and confidential offer of an HIV test – ideally before conception, and with a supportive partner being tested and counseled also, secure in the knowledge that a diagnosis of HIV would make not a jot of difference to the care, respect and support we receive from all around us.

Such a plan would be one with courage, building on what women with HIV have already sought to initiate ourselves,^57,58 instead of alienating us. It would be a plan with might, with credence and support from those who most need the Global Plan and want to believe in it – and with bite, to make a difference. To create the “HIV-free” (not “AIDS-free”)⁵² generation we all crave.

We have the knowledge of what is amiss, and we have the solutions. What is needed is clear: the political will and the funding to realize our own rights and the rights of our children to be born free of HIV. The other essential component is, of course, an accountability framework to ensure that the measures identified above are upheld. Then – and only then – will our rights – and our children’s rights – be real.