Sara, a 54-year-old woman living with HIV, says that when she got her diagnosis, her first thought was “it means death.” That was 1990, one of the crisis’ deadliest years in the U.S. "People were dying everywhere."
In the 24 years since, a lot has changed. Sara has survived. Advances in treatment have vastly increased life expectancy for those who can access the medication. As new wars and diseases pop up around the world, this disease has largely dropped from the news cycle.
But, it hasn’t gone away. An estimated 50,000 Americans will contract HIV this year, roughly the same number who got it in 1990. Since then, the total number of infected Americans, about 1.2 million, has grown significantly, bolstered by the constant infection rate and increased life expectancy.
“Despite the increase in people living with HIV, I see only a small fraction of the number of people living with HIV today as I did 20 years ago,” says Thorner Harris, founder of HIV support group Guys and Girls. “These days, many HIV-positive people live the lives of HIV-negative people. Their HIV is underground, but they are not.” That can make it hard to get a clear picture of who the virus is hitting hardest.
The highest rate of HIV infection is among gay men, especially men 13 to 24, but black women are the next largest group, outpacing straight men and drug users. Per CDC estimates, a quarter of overall transmissions come from heterosexual sex, mostly affecting women. And, the data often don't account for trans* women, who may be recorded as men who have sex with men when they get infected. The disease also disproportionately affects minority women. African Americans represent about 12% of the U.S. population and nearly half of those living with HIV.
"Globally, AIDS-related deaths are down 24% just from 2005," says Charles King, president and CEO of Housing Works. But, he says "HIV/AIDS persists as a disease of the marginalized and the poor, perhaps more than ever. So, while stories of our laudable progress have increased, visibility for those who still suffer from this disease has decreased. It is their stories that must now be shared."
Today is the 26th year of World AIDS Day, a day to raise awareness and support for the 34 million people living with HIV/AIDS globally. To mark the day, we asked six women who are living with HIV for their stories. They told us about getting sick, getting healthy, and day-to-day life with a near invisible disease.
Interviews have been edited and condensed and some names have changed.