Wednesday, March 21, 2007

HIV Testing and Reproductive Choice – How Did The Rights-Based Approach Play Out?

While this reflection is of the International AIDS Conference in Toronto - the tough questions it raises remain as pertinent (and largely unanswered) today as they were 6 months ago.

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By Maria de Bruyn
Created Aug 28 2006 - 8:20am
Any reflections on the XVI International Conference on AIDS are necessarily subjective, as each person reporting attended different sessions, had different goals and talked to different people at different times. Nevertheless, taking the various perspectives into account can give us a more comprehensive view of what transpired in Toronto.
Advocates for women’s and rights issues can rightly take pride in having focused at least some attention on topics that were relatively neglected, such as female-controlled (at least to some extent!) barrier methods (female condoms, microbicides, diaphragms and cervical caps) and violence against women.
One hot topic that was debated in formal and informal sessions was the current push by national and international agencies to have as many people tested for HIV as possible. Most people agree that knowing one’s HIV status can have many benefits, not the least of which is enabling a person to seek appropriate treatment in a timely manner (assuming that affordable treatment is available within a reasonable distance from their place of residence, of course). What concerns those who question the speed with which testing initiatives are being expanded is whether this public-health measure will be based on respect for individual human rights.
Some worry that routine offers of HIV tests by health-care providers may easily turn into routine imposition of HIV tests for patients who are not knowledgeable or confident enough to ask about the benefits and risks associated with tests. (And just think about it – how often have you asked your physician all the questions you had about a medical exam, procedure or prescription? Have you never felt just a little intimidated or reluctant to challenge or question what your doctor says? I know that it’s happened to me and my well-to-do, highly educated, empowered female friends; women raised to be subordinate will have even more problems with this.)
The growing shortage of health-care workers in many areas means that health systems don’t have adequate staffing levels to ensure that patients can give informed consent or receive counseling. Inadequate infrastructure can mean that confidentiality is not ensured as no separate spaces are available where people can receive test results in privacy. Or people’s confidentiality is breached later when they can only access antiretroviral therapy (ART) at offices labeled “AIDS Services,” “ART for adults” and “ART for children.” When women are asked to take HIV tests during labor and delivery, they will often be in a ward with others – how can protocols ensure that their consent is informed and private? And how well can they consider benefits and risks at such a time?
At two different sessions on testing and counseling, speakers highlighted the increased numbers of people tested through Botswana’s provider-initiated testing system. However, it was only in response to an audience member’s question that one scientist admitted they were only now starting to consider evaluations that might also assess client satisfaction, access to ART and possible negative impacts subsequent to testing.
The ATHENA Network and International Community of Women Living with HIV/AIDS (ICW), with assistance from the Center for Health and Gender Equity (CHANGE), organized a press conference to highlight the need to examine testing from a gender perspective. For example, the experiences of ICW members point to the fact that “Testing services often do not address the stigma, discrimination and related violence, and loss of livelihood that many women face if their status becomes known. This makes seeking treatment and care a devastating prospect for many.”
The questions raised about the push for testing were good and necessary. What we need to hear about as soon as possible, however, is how the challenges to human rights-based testing and counseling are being tackled. Just a few examples (there are more!). Many physicians are coming to Africa from other countries to help deal with the health-care worker shortage (e.g., from Cuba). How well can doctors who don’t speak local languages ensure that people are able to give informed consent for a test? A study coordinated by Ipas on meeting HIV-positive women’s health needs recommends that women living with HIV be paid as counselors, instead of having them supplement health services as volunteers. Health-care workers in Argentina confirmed that HIV-positive counselors can offer superior services – how many testing programs are taking this approach? How do testing protocols take into account follow-up of people who tested positive (e.g., in accessing ART if needed or in providing treatment and support for mothers and children)?
Regarding reproductive choice: in 1992, when ICW was founded, the network published 12 statements on what was needed to improve the situation of women living with HIV/AIDS; one of those statements was: “The right to be respected and supported in our choices about reproduction, including the right to have, or not to have, children.” In the 2002 Barcelona Bill of Rights, ICW and other organizations stated that a fundamental right for women and girls around the world is “to sexual and reproductive health 1 services, including access to safe abortion without coercion.” So is reproductive choice receiving attention at the AIDS conference?
Some state that it was scarcely addressed; that is certainly true, for example, in comparison to prevention of perinatal transmission. But a few small steps forward have been made if we consider that the topic was virtually ignored in the past. About 20 poster and CD-ROM abstracts included the topic of pregnancy termination or integration/linking of HIV/STI and abortion services; several called for access to safe abortion services or noted how current laws create obstacles for women.
Of course, many people will not read the abstracts and did not see the posters. So was the topic visible otherwise? The T-shirts given away to participants in the Women’s March and Rally (the first to be officially endorsed by an AIDS conference) featured the Barcelona Bill of Rights, including access to safe abortion. Buttons distributed by the ATHENA Network and Blueprint Coalition asked for “sexual rights, reproductive choice and healthy motherhood.” And in an opening plenary speech on the first day of the conference, Louise Binder highlighted the need for women to have access to safe abortion for all indications permitted by law. Now we need to ensure that the 2008 International AIDS Conference includes at least one oral abstract, round-table or panel discussion session on reproductive choice with discussion of issues such as antenatal care for women who choose to become pregnant after knowing their status, access to safe abortion and integration/linkage of postabortion care services into HIV/AIDS information and services, coercive abortion/sterilization as human rights violations, and the possibility of adoption for HIV-positive parents.
One final observation: Louise’s plenary was the final one on 14 August and previous speakers had exceeded their allotted time. This resulted in many delegates leaving the session to go to the next one; considerable numbers of women also left the room before hearing the presentation on women and HIV/AIDS. When her presentation went a bit long, the chair of the session (a woman!) cut off her microphone. To her credit, however, Louise stood her ground, refused to budge and was supported by remaining delegates so that eventually her microphone was turned back on and she could finish. The most insulting thing about this was the chair’s admonition that Louise had to conclude because the next session was about to start and included “important people – Bill Clinton and Bill Gates.” Now what does that say to us about women having a fully recognized and meaningful place at the table??
Some references:
ATHENA Network: 2
ICW press release on testing: 3Ipas study: 4
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