African-American women with HIV are often overlooked and under-supported

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The face of HIV in the United States has long been white gay men, even though the epidemic has had a devastating and disproportionate impact on African-American communities.

This is especially true among women; 60 percent of newly diagnosed cases of HIV in women in 2017 were African-American. Yet, African-American women’s voices are notoriously absent from the national discourse on HIV.
Largely invisible to a fractured health care system, these women are often breadwinners and matriarchs whose families count on them for support and care.
Treatments to help people who are HIV-positive manage their illness and survive into older age have improved greatly, yet the unique health needs of African-American women living and aging with HIV – estimated at about 140,000 – are often ignored.
While many are actively taking medication and receiving care, some do not know their HIV status. After diagnosis, many have difficulties managing their HIV, which can contribute to their other health challenges.
I have been working on collecting oral histories from many older HIV-positive women in the Washington D.C. area, where I live and research. It is my hope that by focusing on the voices of African-American women themselves, we as a country are able to better understand the profound impact that HIV has had on black life.

HIV and African-Americans
Many believe the HIV epidemic in the United States is nearing an end, in part because increased funding, targeted prevention efforts, and better treatment have resulted in drastic reductions in new HIV-positive cases. Even President Trump, in his recent State of the Union address, discussed his goal of ending HIV by 2030. I am an HIV researcher, and I can say this is totally unrealistic, especially for African-Americans.
Despite comprising only 12 percent of the overall U.S. population, African-Americans represent 43 percent of all persons with newly diagnosed HIV and 42 percent of all people living with HIV. African-Americans living with HIV are nearly 10 times more likely to be diagnosed with AIDS and over six times more likely to die of complications of AIDS than their white counterparts.

African-Americans are also at a higher risk for other health conditions, which can make managing HIV infection more difficult. For instance, African-Americans are twice as likely to die from heart disease and 50 percent more likely to have high blood pressure than whites.
In Washington D.C., a place filled with public health experts and policymakers, the HIV prevalence rate is the highest in the nation, exceeding the World Health Organization definition of a generalized epidemic. African-Americans represent a staggering 75 percent of all HIV cases in D.C.
Toya Tolson of Prince George’s County suffered trauma and abuse as a child only to battle addiction as an adult. She is one of more than 100,000 African American women who are aging with HIV.

HIV in Washington D.C. is a regional epidemic, and crosses the jurisdictional border into Prince George’s County, Maryland. The sprawling suburbs of Prince George’s County are well known for their ranking as one of the wealthiest African-American-majority counties in the nation, but with HIV rates that are four to 10 times higher than those of white adults.
The high rates of HIV in Washington D.C. and Prince George’s County reflect a growing public health crisis in the United States, where the disproportionate burden of HIV is increasingly concentrated in the U.S. South. Southern states, where 55 percent of African-Americans live, have the highest rates of new HIV-positive diagnoses, the highest percentage of people living with HIV, and the lowest rates of survival for those who are HIV-positive.
Government investment in the domestic response to HIV tops more than US$26 billion per year, yet these health inequities in HIV for African-Americans continue to persist. These inequities are due in part to abstinence-only funding to schools with large minority populations and HIV-specific criminal laws, which undermine the health and well-being of African-Americans and perpetuate systems of inequity. Systemic racism in resource distribution, such as concentrated poverty and health care and funding disparities is also a significant driver of the epidemic within African-American communities.
Since the beginning of the epidemic in the 1980s, African-American women have carried a large burden of HIV, and more than 60,000 lost their lives. But not everyone died. My project of personal narratives of these women suggest that they live with multiple uncertainties brought on by HIV. Many worry about how their health, disability, and eventual death will impact their roles as mothers, grandmothers, daughters, sisters and wives.