The right to know: women’s choices, Depo-Provera and HIV

As we enter the fourth decade of AIDS, we need to assert once again the importance of transparency, knowledge and autonomy in the introduction and distribution of technologies for prevention and treatment of the disease.

Zena Stein Erica Gollub Ida Susser
20 July 2012

As part of UNAIDS’ and colleagues’ roll-out of the Global Plan to create a new HIV-free generation, it seeks to ensure that women remain free of HIV and that women with HIV can avoid unwanted pregnancies. Therefore it is essential to look also at women’s family planning services in this regard. As the recent London Family Planning Summit has shown, there is a vast unmet need for family planning globally. 

Last November, an unusually careful epidemiological study, based on the follow-up of 3790 partners in 7 countries in Africa, in which one partner had HIV (with all the partners in HIV sero-discordant relationships) demonstrated that the injectable contraceptive Depo-Provera (DMPA), containing progesterone, doubled the risk for HIV acquisition for women who already had herpes simplex virus (HSV; which is common in Africa). The oral contraceptive raised the risk but much less so. As have many others, we argue strongly that it is not sensible to dismiss these findings as due to chance.

The potential hazard of progesterone was first brought to wide attention in 1996 by primatologists who, in connection with their work with Simian HIV, the virus related to HIV, intentionally used progesterone to increase the rate of HIV transmission.  This information certainly raised serious concerns in the HIV world and epidemiologists recognized that confirmation in human populations would be very difficult. Proof of such an effect required a massive prospective study that began with women before they had HIV and followed them for several years. In addition, much of the information collected on participants would have to rely on self-report.

There have by now been many such studies, fully reviewed, specifically in Kenya, Malawi, Zambia and South Africa: on the whole, the findings are in agreement with the recent publication, even if not all statistically significant.  Another study, also in Africa, showed similar findings, and especially showed raised risks in young women.

The November study has been widely discussed, formally and informally: the main criticisms rest on the credence to be placed on reported sexual behaviour, specifically the number of episodes of sex without condom use. But who can do better than self-report? There is very little chance that the “ideal” randomized controlled trial could be designed, implemented and analysed within the next decade, nor even that it would provide any better evidence.

Apart from these human studies, important laboratory studies since 1996 have illuminated the likely biological processes by which progesterone could impair the natural defences against viral infections. These add substantially to the “biological coherence” needed to support a causal connection between progesterone and a raised risk of acquiring HIV.

An “expert committee” of WHO is understandably concerned, as we all are, with the potential harm of withdrawing from use, or even restricting the use of, the most efficient and effective contraceptive we have. Depo requires only a three-monthly injection of large amounts of progesterone, which are slowly absorbed in the woman’s body. It is currently very widely distributed, especially among women in poor communities, in the United States, Latin America and Africa. It is less widely used among middle class women with access to the education and resources to employ other options.

 Withdrawing Depo may increase unwanted pregnancies, themselves associated with morbidity and mortality in low resource communities. Thus WHO experts wrote that “the data (on Depo risk) are insufficient to mandate policy change to use of such methods”. It adds that women using Depo should be counselled to use condoms consistently.  This statement by WHO, and a similar statement from the US Centers for Disease Control (CDC) cannot adequately address our current dilemma.

The WHO (and CDC) statements are ambiguous, and indeed, inherently contradictory and confusing; interpreting them to women users and couples will be very nearly impossible because they do not give sufficient usable information, nor do they effectively  provide women with additional options for protection. 

There are currently only two options for women that prevent conception and also reduce the risk of HIV: the female condom, which is seldom appropriately explained or provided and the male condom, where negotiation still fails for so many couples.

Asking a woman to use a condom as well as Depo is not an adequate provider response.  Providers need, as they once did, to resume major responsibility for training and encouraging women to learn about reproductive anatomy and to use (existing) barrier methods of their own.

In fact, the latest dilemma forces all of us to return once more to the need for ongoing support and education for women about the fundamental issues of birth control and HIV transmission. As well,  it underscores the need to raise awareness about gender issues so central to protecting women from infection. On that basis, we believe women can adequately assess the options available and the risks involved, and also to advocate for real choice. 

The Depo-HIV issue is at present hotly debated and essentially the consensus among policy makers has so far favoured inaction and incomplete disclosure (exemplified implicitly, perhaps by WHO and CDC) versus accepting the results at hand and acting on them.

Both sides are well intentioned but a policy based on depriving the public and clients of a truthful understanding of their risks cannot in our view, be justified. Many thoughtful participants in this debate are in agreement with our position, that women should have full access to information and choice of methods.

In our view, we should face the truth as we see it, imprecise as it seems. We need actively, and now, while HIV still threatens the life and health of so many, to explore other means, and use more effectively those options we have, to protect against HIV, on the one hand, and permit or prevent conception on the other. In order to do this, we will have to invest in much more extensive and ongoing education and training for both providers and women. A more comprehensive education and training will serve as a long overdue crucial investment for the future. It will be an essential platform for implementation  as new options are developed or new threats emerge.

We propose the following active steps:
1. Share the information that we have with the public, and especially with clients using HIV clinics and family planning services. WHO should assist, if necessary, to develop a careful honest statement, capable of translation, illustration and modification at the local level of what the evidence actually shows. Women need to be positioned personally to evaluate their use of the barriers we have - condoms, male and female, the only devices we have that will confer protection against both unwanted pregnancies and HIV - and other conditions.

2. Open discussion about the current Depo dilemma will lay the groundwork for community understanding and implementation as the newer anti-HIV technologies become increasingly available: pre-exposure preparations, male circumcision, microbicides and rings. All such new technologies need distribution and further evaluation. Only when women and men have access to full explanations and understanding of these new options can they plan their families and also protect themselves from HIV.

3. We need research into the social situations in communities, among youth and between intimate partners that reinforce the use of existing barriers and the possible use of other options. Again, all adequate prevention will require the communication of effective information and understanding for all.

4. As all new pharmaceutical approaches will introduce new side effects and biological challenges, we need to develop alternative barriers and devices, including the cervical barrier Femcap, as well as the Intra-Uterine Device.

As we enter the fourth decade of AIDS, we need to assert once again the importance of transparency, knowledge and autonomy  in the introduction and distribution of technologies for prevention and treatment of the disease. Listening and discussion with respect to the many  dilemmas of women’s needs for family planning and AIDS prevention and treatment are central to useful resolutions. To engage appropriately in these discussions, women have the right to know and understand as fully as possible their options and the risks involved. This right to know applies both to the usefulness of older options, such as the male and female condoms, and the new technologies being developed.

This is one of a series of articles that openDemocracy 50.50 is publishing on AIDS gender and human rights in the run up to, and during,  the AIDS 2012 conference in Washington DC,  July 22-27.





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