Managing the psychological and social aspects of HIV/AIDS is as important as medical treatment in helping black women cope with the disease, a new research report shows.

Black women who are supported by nonprofit organizations are more likely to think of themselves as “living with the disease” rather than dying from it, and live longer than those who don’t have that support, according to the Northwestern University study.

“So I am trying to think of HIV as not just a medical condition that needs to be managed, but a social condition that needs to be managed,” said Celeste Watkins-Hayes, an assistant professor at Northwestern.

Her research is to be published in “Sex, Power and Taboo: Gender and HIV in the Caribbean and Beyond.”

Black women are the largest racial/ethnic group diagnosed with HIV in Chicago, according to a report released in November by the AIDS Foundation of Chicago. Citywide 79 percent of 316 women diagnosed with the disease in 2006 were black. Total HIV cases diagnosed that year, the most recent for which data is available, were 1,557.

Medical treatments and the social service safety net around HIV, especially in the Chicago area, play a crucial role in the life expectancy of women with HIV/AIDS, said Watkins-Hayes, an assistant professor of sociology and African American studies. But if the social services are under-resourced and receive less attention, she added, HIV may become less manageable as a chronic illness.

Chicago House, an HIV housing and services nonprofit on the Near North Side, helps clients manage the disease as more than a medical condition.

Judy Perlof, a program director for Chicago House, explained that clients use a range of social services in addition to preventive and medical programs, including case management, family support and housing services.

“Women we work with have multiple challenges,” she said. “Of course, there is the HIV/ AIDS illness, but then there is also limited employment, limited education, issues around mental health and substance abuse.”

Over time, Perlof added, women at Chicago House begin to look at their diagnoses as more of an unpredictable chronic illness instead of the death sentence it was once termed.

“I think they look at our program as the supports they need to get their lives back on track to become independent. However, I think there continues to be a lot of stigma and discrimination. I think that this program allows people to start learning how to live with HIV in an environment where they don’t have to hide their disease,” Perlof said. “That’s where all the supports come in, and then you can start moving beyond it.”

Watkins-Hayes stressed the importance for HIV nonprofits to not stigmatize clients, maintain their confidentiality, and offer necessary services when needed.

“The imperative for us is to keep thinking about, and talking about HIV to make sure that those institutions are not only resourced, but heavily resourced so women can continue to receive the networks they need to manage their health conditions,” she said.

HIV in Chicago

Top 10 neighborhoods with highest HIV/AIDS prevalence rates as of 2006

Uptown 1,320
Edgewater 1,011
East Garfield Park 871
Washington Park 820
Lake View 787
Rogers Park 710
Near South Side 641
Woodlawn 594
West Garfield Park 586
Near West Side 570

Source: Chicago Department of Public Health's
STD/HIV/AIDS Surveillance Report (Summer 2008)