Researchers at the Johns Hopkins Bloomberg School of Public Health recently conducted interviews with 191 HIV-positive women being seen at one of two Baltimore clinics. They found that though these women were taking proactive care of their health by regularly visiting a clinic (the best-case scenario), many had never had a direct discussion with their health care provider about their plans to have children -- or about what kinds of precautions they should take to prevent transmission to their partners and potential children. The study found that,
... among [HIV positive] women who intended to have a child, 56 percent had not had a personalized discussion about pregnancy with their health care provider. Of those who had done so, most initiated the conversation themselves.Sixty-Six percent of the women interviewed indicated that they did indeed plan to have children -- and yet their health care providers were found to have remained silent on the critical issue of how women with HIV should approach pregnancy.
The reasons for that silence aren't totally surprising: the authors of the study suggest that there may be real discomfort at play in discussing the realities of pregnancy among HIV-positive women -- both on the part of patients and their health care providers. They note:
Given the stigma HIV-infected women may experience when considering childbearing, they may have a heightened fear of disapproval from their HIV provider. If communication is not initiated by the provider, it may only occur after pregnancy.This fear of disapproval and lack of understanding from the medical community are two among many reasons that the Ms. Foundation's work around the epidemic of Women and AIDS remains so important. Our grantee organizations are meeting women where they are in the fight against HIV, and tackling issues like these -- that affect women's lives but rarely make front-page news (even in the medical community) -- head on.
Take our grantee partner SMART: this Harlem-based organization, founded in 1998, provides treatment, health and prevention education for women living with and affected by HIV/AIDS in a safe and supportive environment. SMART provides women with HIV the information, support, and confidence they need to avoid falling into traps set by their doctors' silence or their own fear.
Through their SMART University program, SMART offers women with HIV access to the tools they need to become informed participants in their treatment decision-making process, and helps build clients into strong advocates for themselves, their peers and communities. Along with other members of the National Women and AIDS Collective (NWAC), the first and only national policy network of organizations led by women living with and affected by HIV/AIDS, SMART and the Ms. Foundation are working to render the stigma of HIV, and the fear it engenders, a thing of the past. No woman should have to approach pregnancy too afraid to ask her doctor about its consequences -- for herself, her partner, or her unborn child. Learn more about how you can help NWAC and the Ms. Foundation address the unique and unmet needs of women living with and at risk of HIV/AIDS.
Thanks to Tatianna McKinney at RH Reality Check for the tip on this report.