Heart of the Matter

by David Waggoner

Heart of the Matter

March 10 is National Women and Girls HIV/AIDS Awareness Day, a time to emphasize the concerns that should be at the forefront of the fight against AIDS all year long. For the past decade, researchers and advocates have made strides in bringing to light the relationship between gender oppression and HIV risk, destigmatizing sex work, and refining the treatment options for women living with HIV.

One area of focus has been addressing issues around engaging women, who very often worry about others before themselves, in care. Connecting to and staying in care is a vital concern for women living with HIV/AIDS and their service providers, but what do we actually know about the barriers that stand in their way? One recently published study, “Health Status of HIV-Infected Women Entering Care: Baseline Medical Findings from the Women of Color Initiative,” interviewed women of color living with HIV to examine self-reported limitations when it came to activity, health conditions, and health-related quality of life measures, using a measurement tool developed by the CDC that tracks “healthy days” and “unhealthy days” based on physical, mental, and social well-being.

The prospective study followed 921 women of color who were entering HIV care at nine sites across the U.S., representing the areas most affected by HIV in the country. Participants identified as non-Hispanic Black (617), Hispanic/Latina (244), and other/multiracial (56). The median age was 42.3.

The researchers, led by E. Byrd Quinlivan, MD, focused on women of color living with HIV because past research has shown that, compared to other women and men, both HIV-infected women and women who have been categorized as racial/ethnic minorities are more likely to put off care because of a variety of factors (transportation issues; competing needs); to miss doctor’s appointments, start antiretroviral therapy later, and stop taking regimens more frequently; and to have increased morbidity and mortality.

The researchers offer a complex analysis (and I suggest you seek it out), but one of the main conclusions is as follows: “[W]omen reported more physically and mentally unhealthy days than the general U.S. population of women even when they did not report an activity limitation. While age and time since HIV diagnosis were associated with an activity limitation, cardiovascular disease was the most strongly associated predictor variable. Prevention and treatment of cardiovascular disease will need to be a standard part of HIV care to promote the long-term health and HRQOL [health-related quality of life] of HIV-infected women.”

That the heart needs special attention when it comes to our physical well-being, as well as mental and social being, probably comes as no surprise. But it is often difficult keep the beat steady. This month’s cover story subject, Wendell James, an AIDS educator and co-star of reality TV’s Raising Whitley, knows this all too well. With candor and clarity, he shares with interviewer Stevie St. John his struggles to navigate faith and sexuality, a journey that he says has taken a toll on his romantic relationships. Says Wendell: “Yes, I still struggle to this day, and I do hope one day I can better embrace myself in this area. However, I’m not looking for sympathy or woe is me. I’m doing fine. We all have struggles of some kind, and now people can see a person can appear well put together, self-assured, etc., and still have struggles.”

Other features in this issue also focus on self-care: The Love Positive Women initiative seeks to help empower women in an often-stigmatizing world; HIV Equal and Reach LA create a safe space for young men of color to find community and engage in care; and artist Richard Vechi shares how living with HIV has been a blessing in disguise. No matter where we are in our journey living with HIV, one thing is clear—we need to take things to heart.


David Waggoner is Editor in Chief and Publisher of A&U, the first national HIV/AIDS magazine in the U.S.