CHLP hosted the very first U.S.-based electronic forum for HIV-positive women and their advocates last month, and learned a lot in the process.
The National Summer 2010 WARC E-Forum was an online electronic dialogue that took place July 12-July 31, 2010. The goal was to create a safe space for HIV positive women and their advocates to share their experiences with discrimination and their thoughts on what was needed to address it. CHLP and our partners would in turn get a better sense of where we should focus in making sure policies track the real needs of women living with HIV across the country.
One thing we learned: the E-forum is a promising tool for getting more voices of people living with HIV into the mix that influences what advocates and government officials prioritize on their behalf.
We started out with a network of organizations dedicated to the rights of women living with HIV, including the ABA's Center for Human Rights, AIDS Coordinating Committee, and its Rule of Law Initiative; WORLD/Positive Women's Network, Women of Color United, National AIDS Fund, Latino Commission on AIDS, The National Association of People With AIDS and HIV Law Project, among others. Together with these partners we worked out a schedule, priority areas, and a plan to get as many women engaged as possible.
Participants had the option to post anonymously and could also select whether they wished their comments to be viewed exclusively by women who identified as HIV positive or by all E-Forum participants--which included policy analysts, attorneys, government HIV/AIDS program staff, health care professionals and other advocates.
Week One focused on Discriminatory Direct Service Experiences and Interactions in employment, insurance, disability, housing, and sexual and reproductive health services. One health service provider reported that, for many of her clients, there was a lack of information about HIV and reproductive rights for those who needed it. She pointed out that "… the general sense is if a HIV+ woman gets pregnant, she is being irresponsible." There clearly is work to be done nationally in the dissemination of accurate information for HIV positive women about reproductive rights and the options women have to reduce the risk of HIV transmission during and after pregnancy.
Week Two added a focus on Local/Regional Community-Based Policy Solutions by geographic region (Northeast, South, Midwest and West). The most active discussion took place in the South, where participants discussed the impact of HIV disclosure and criminalization laws in Louisiana.
Week Three asked participants to comment on International Human Rights, Gender-Based HIV Discrimination and the recently released National HIV/AIDS Strategy (Live Online July 26-July 31, 2010). Here we had the most active and lively discussion, where participants remarked about lack of explicit funding directives in the recently released National HIV/AIDS Strategy.
E-Forum participants were also invited to complete surveys to share more about their direct experiences with discriminatory treatment in access to employment, housing, sexual and reproductive health, insurance/disability benefits, and immigration (both before and after the HIV travel ban was removed).
Hulda, a woman living with HIV who completed the survey on Sexual/Reproductive Health Services experiences, reported that after she disclosed her HIV status, medical professionals avoided touching her, and that her HIV status was revealed to others not involved in her HIV care. Although she was able to resolve the grievance with the medical department head, she wrote:
"To be treated unfairly in a medical facility I would never expect. You would think the doctors and nurses there would have more, or better, training than that. Who would know that they would be afraid to be near you too?"
Hulda lives in San Francisco, a city that prides itself on access to high quality healthcare for all its residents and a city regarded as an established leader in the field of culturally competent staff training, treatment and care for clients living with HIV. Hulda had every reason to expect better treatment.
The inaugural WARC E-Forum demonstrated the need for continued dialogue around women's experiences and ideas for policy change. CHLP, working with partners such as WORLD and the Latino Commission on AIDS, plans to provide more opportunities for critical dialogue and policy analysis through future WARC E-Forums.
While no broad conclusions about HIV positive women's experiences with discrimination can be drawn just yet, the inaugural WARC E-Forum established the value of this innovative tool to explore HIV positive individuals' experiences with discriminatory treatment in ongoing implementation efforts for the National HIV/AIDS Strategy (NHAS). We hope to continue to gather these shared experiences to help inform federal policy makers on how the NHAS can most effectively attend to the needs and rights of HIV positive women on a practical day-to-day level.
Stay tuned for the next WARC E-Forum. Visit the Women's Advocacy Resource Connection Page for updates!
For more information on Human Rights Law, Gender Issues, Racial Justice, HIV as a Disability, Immigrant Rights, Sexual and Reproductive Health Rights and HIV Rights, please visit CHLP's Online Resource Bank here.