Showing Sero-Different Couples Some Respect
AIDS 2010 Session Meshes Research on Pos-Neg Relationships With Personal Stories
Table of Contents
Sero-different couples (or magnetic couples, or serodiscordant couples, or mixed-status couples, or whatever your favorite name is for an intimate pairing of people who don't share the same HIV status) have existed since the beginning of the HIV epidemic. There hasn't been much exploration into how these couples make their unique relationships work -- either from the more obvious HIV prevention angle, or on a psychosocial level: What sorts of stresses does each partner face? How do they talk about HIV with their respective families, and with their children? And what about gay couples, who are left to draw conclusions about their relationships from an already paltry pool of literature that's overwhelmingly focused on heterosexuals?
The body of knowledge is slowly growing, though; and in this session at AIDS 2010, partners in sero-different couples gathered with researchers in the field from all over the world, to share what they've all learned.
The moderator of the session was Christo Greyling, a Dutch Reformed minister who's the HIV-positive half of a sero-different couple. (I was about five minutes late to the session so if he told the crowd this, I didn't hear it; but I recognized him from his AIDS 2008 video interview with TheBody.com, in which he talks about his own experiences conceiving his daughters with his HIV-negative wife. He talks about those experiences starting at the 8:30 mark in the video!)
The session had an even braid of research findings and personal testimony that's rare in a conference presentation on any subject. However, I'm going to unravel that braid to make it easier for those interested in research to skip to the descriptions of those presentations. For further reading, the U.S. Positive Women's Network put together an excellent recap and perspective piece on some of the research presented at this session. The listing below is not in the exact order of the original presentations.
In some cases, if you click the links on the titles of each part of the session, you can listen to their presentation along with the slides on the AIDS 2010 Web site -- if you're willing to download a little piece of quick-to-load, free Microsoft software.
"Sex" may appear twice in the title of the kickoff portion of the session, but in the presentation itself there was much more talk of love. The speakers were Major Rubaramira Ruranga and his wife, Eva Nkoba Kanyiginya, both from Uganda.
Major is not this stately, lyrically spoken gentleman's first name -- though that's what the panelists and question-askers ended up calling him. It's his rank in the Ugandan military. He was diagnosed with HIV in 1989, and to date he's the highest-ranking military officer in the world to go public with his HIV-positive status.
Major's wife, Eva -- whom he refers to as "my friend, my love" -- spoke next on the panel. She's HIV negative, but she lost her mother, father, brother and uncle to AIDS complications before she was 16. Utterly alone in the world, she proceeded to have two children (now in their teens), fathered by men she took up with in order to survive.
She and Major met when he came to her job to speak about his HIV status, which alone was unheard of to her. "Though elderly, he looked strong and happy" reads a line from her session slide describing the day the two met. The span between their ages is significant indeed -- Eva is 33, Major is 62 -- but the level of respect that's apparent when they speak to one another makes it easy to forget the difference. I'll let you see for yourselves, though, in this video of Major and Eva -- complete with surprise cameo by their 1 1/2-year-old son, Rolf.
Monique Tondoi, a feminist activist from Kenya, was next to share her personal experiences on the panel. It's definitely worth listening to the audio if you're able. Tondoi has been living with HIV for 16 years and has been with her HIV-negative husband for 20, and according to her, they still argue about condom use because he doesn't want to use them. Her teenage children still sometimes slip into believing societal myths about HIV transmission, even with an outspoken, educated, HIV-positive mom at home.
She brings up other important and often-overlooked points of being the only HIV-positive person in her household, like the relative loss of privacy and autonomy within the family with respect to health-related issues. For instance, her family's concern for her translates into their wanting to know everything about her doctor visits -- but there are some things she'd like to keep to herself. She offers some guidelines her family has followed for making sure they communicate, including holding "roundtable" family discussions to air fears, concerns and frustrations.
Epidemiological, Biomedical and Psychosocial Aspects of HIV Discordance: Programme and Policy Challenges (slides and audio not available online)
Emory University researcher Kristin Dunkle's presentation took a more jargon-heavy, scientific tack, but the gist of it was right in line with the tenor of the rest of the presentations: support, support and more support for sero-different couples! Expand testing efforts to the family level instead of the individual level; promote harm-reduction techniques aside from the spontaneous ones women in sero-different couples devise; support people in having kids.
In the population with which Dunkle works (her study was conducted in parts of Africa), partner violence and coercion are part of the reason why harm reduction becomes a necessity, so the fact that support for members of sero-different couples isn't all about happily-ever-after was an important reminder for the crowd.
Kevin Moody of the Netherlands, from the Global Network of People Living With HIV/AIDS (GNP+), brought the experiences of sero-different MSM (men who have sex with men) couples to the session. Moody decried the lack of research into the psychosocial aspects of sero-different coupling, especially among MSM. His presentation was a case in point: The study he presented included a tiny, beyond-statistically-insignificant sample of MSM (just two couples out of 51 that were recruited; one couple was lesbian). Despite the limitations of the study, the presentation provided an illuminating exploration of the choices and coping strategies of sero-different couples.
I had flashbacks of AIDS 2008 in Mexico during Asha Persson's presentation. I believe the Swiss consensus statement of 2008 needs no introduction, but in case it does: The shorthand term "Swiss statement" refers to the statement written by four Swiss HIV/AIDS experts, on behalf of the Swiss Federal Commission for HIV/AIDS, stating that HIVers could not transmit HIV sexually, provided that they had an undetectable viral load for six months, had no other sexually transmitted diseases and were strictly adherent to HIV treatment. The statement was released in early 2008, in plenty of time for AIDS 2008, and was the talk of that conference.
In New South Wales, Australia, the "Straightpoz study" of people living heterosexually with HIV has surveyed 47 individuals involved in sero-different couples about their sexual practices, harm-reduction strategies and so forth. The second phase of the study completed last year, so Persson, who presented highlights of the Straightpoz study, was able to get some participants' reactions to the Swiss study results.
According to Persson, some Straightpoz study participants were somewhat miffed that doctors had not at least spoken with them about the Swiss statement in a clinical way, even though its conclusions haven't reached universal-recommendation status. That way, they would have had less fear when having unprotected sex to conceive, and been able to make more informed decisions.
Audience members at the session identified with the distress the couples in the study were expressing at not being offered this useful, available information by their doctors. This sense of distress was borne out in the question-and-answer period by professionals and people living with HIV all over the world who stressed the need for more research -- if only to give HIV-positive people a sense of their options, rather than denying information out of worry that it will be used in an irresponsible manner.
You can access the full text of the 2006 phase of the Straightpoz study, as well as the 2009 phase, online (both PDF files).
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