Since the beginning of the AIDS epidemic, women's HIV care has been largely determined by the same factors that have affected all our healthcare needs: getting info and medical care that's appropriate for our "not-man" bodies, but which does not focus solely on our ability to make babies. HIV infection and disease are no exception. On one hand, there's Treatment: Women are still largely unable to find straight answers to gender-specific medication concerns, and researchers have yet to prioritize the studies that would fill this knowledge gap. While we are all relieved that the risk of perinatal transmission has been so dramatically reduced, too many questions remain unanswered for nonpregnant women.
On the other hand, there's Prevention: Millions of women at risk for HIV infection have no reliable protection method that doesn't require partner cooperation . . . something the majority of the world's women can't count on. Add to this the fact that both male and female condoms, when used properly, also keep women from becoming pregnant -- which is great if a pregnancy isn't wanted, but not when it is.
Year 2000 saw one major victory on the Treatment Front (passage of the Clinical Hold Rule) and increased activity on the Prevention Front (microbicide research activism). There's still tons of work to be done, but for right now let's take our hats off to the activists involved in this progress -- you deserve cake, and so much more!
Treatment: Clinical Hold Rule
Currently, women comprise only about 9% to 20% of all clinical trial participants -- a shockingly small number, given the obvious need for gender-specific clinical information. But even more upsetting is the main reason why the number of female trial participants is so low: until very recently, women who could possibly become pregnant could be (and were) legally barred from participating in clinical research trials
. Although women were present among the earliest cases in the AIDS epidemic, the available trials from the early 1980's until now have largely excluded female participants "of childbearing potential" -- primarily out of fear that women would sue pharmaceutical companies if the trial drugs were later found to cause fetal damage, birth defects, or harm to the reproductive system. The exceptions, of course, were perinatal transmission trials. But those were done primarily for the benefit of reducing HIV infection in infants, not for the physical health benefit of women.
It's for these reasons that the FDA's passage of the Clinical Hold Rule in the summer of 2000 is one of the biggest recent activist victories for HIV-positive women. In short, the Clinical Hold Rule allows the FDA to delay or suspend any clinical trial that's found to be excluding women (or men) because of its "reproductive potential." Therefore, passage of the Clinical Hold Rule dramatically increases the opportunity for women with HIV and other potentially life-threatening conditions to take advantage of drug trials and other treatment research.
Us vaginal people think it would be great if we could all enforce the "no glove/no love" rule every single time, but very few of us can (and some of us don't want to). Some of our penile friends have also realized that it would be kinda cool to have other options for infection control -- mainly something a little less "rubbery." Wouldn't it be great if there was some kind of . . . I dunno . . . cream or gel we could put on or in ourselves to protect us from HIV and bacterial infections? Something we could carry around discreetly, and apply before sex . . . something we could control ourselves, without discussion or hassle from a partner?
Something like . . . microbicides?
Fortunately, activists are working hard to get microbicides some of the attention -- and funding -- they so richly deserve. Advocates from organizations such as the International Center for Research on Women (ICRW), Alliance for Microbicide Development (AMD), and the Center for Health and Gender Equality (CHANGE) have already laid the groundwork for coordinated efforts to get microbicides some federal and institutional money. Microbicide activists like Anna Forbes, Polly Harrison, Megan Gottemoeller and Lori Heise have been educating the public and private sectors about the amazing potential inherent in the products microbicide researchers and developers such as Anne-Marie Corner, Deborah Anderson, Julie McGrath, Zeda Rosenberg and Sharon Hillier are trying to get made, tested, and available.
If you want to join in microbicide activism yourself:
- Call your state representative and/or senator and encourage them to support the Microbicides Development Act of 2000. This bill seeks to increase the National Institutes of Health (NIH) funding for microbicide research from its current $25 million/year level to $50 million in 2001, $75 million in 2002, and $100 million in 2003. To reach your senator or state rep, call 800-648-3516.
- The Global Campaign for STI/HIV Prevention Alternatives has put together an Activist Packet for anyone interested in raising microbicide awareness and furthering the fight for microbicide research funding. Anyone who wants to join this activist effort can get more information, sign a petition, or obtain educational materials about microbicides by calling 301-270-1182 or checking out the Gender Health Web site at http://www.genderhealth.org.
Much as we're all happy about the advances in perinatal transmission protection, we need care above and beyond what affects our potential offspring. We need to know more about how women's HAART experience differs from men's, and how to get the most from all our meds. We need protection methods that are under OUR control, not reliant upon our ability to convince a partner to "do the right thing." And we need a safe way to try for a pregnancy when we would otherwise not risk baby-making.
That's not too much to ask. So let's make it happen.
Microbicide information was taken largely from POZ articles "The Jelly Revolution" (3/2000, Deb Schwartz) and "Micro Money" (11/2000, Anna Forbes). Both these women do amazing work -- thank you, Deb and Anna!
Laura Jones is a sexual health activist and teacher, and is also a counselor for the Illinois AIDS/HIV & STD Hotline, operated by TPAN.