In the 1990s, Dedra Spears-Johnson worked as a social worker in the suburbs of Washington, in the midst of the AIDS epidemic. A position that allowed her to appreciate the immense difficulties that African-American women infected with HIV were facing.
Since 1995, very effective treatments exist, but even today, many of these women do not take them, because of economic but also cultural barriers.
“There is a shame around being touched by this disease”, by Dedra Spears-Johnson to AFP. “In our communities, we don’t talk about sex”.
The first report of this rare disease, later called AIDS, dates back 40 years ago. But access to revolutionary treatments developed since continues to be a problem in the United States, especially for African Americans. And inequalities are growing.
Of the total new infections each year, the proportion of black people rose from 29% in 1981 to 41% in 2019, according to an analysis by the Centers for Disease Prevention and Control (CDC).
Gay black men are much more likely to be exposed to the virus, “Because of the high prevalence of HIV” among this population, explains a report from amfAR, an AIDS research foundation. Other factors play: “A history of neglect on the part of institutions, a lack of resources, of access to health care and a social safety net”.
From the start, “I was in the front row to see that people were not being helped”, says Dedra Spears-Johnson. That’s why she co-founded an organization, Heart to Hand Inc., which tries to provide answers to concrete problems that mothers can sometimes face, such as childcare, or transportation.
Little used preventive treatment
On June 5, 1981, the CDC first described a rare form of pneumonia in five gay men, marking the start of the epidemic in the United States.
The first antiretroviral drug (AZT) was authorized in the country in 1987. But the side effects, in particular anemia, are numerous. In 1995, other more effective treatments marked a turning point, and the following year the number of deaths from the disease fell for the first time. But patients have to take 12-16 pills a day, which makes them sick.
In 2012, the US Medicines Agency authorized PrEP, a preventive treatment prescribed to people at high risk of being exposed to possible infection. This leads to a sharp drop in transmission rates.
For example, the annual number of new HIV infections fell by 73% between 2019 and the peak of the 1980s.
But of the 23% of people actually using PrEP among those who could benefit, only 8% were black, compared to 63% white, according to the CDC.
David Wilson, a 33-year-old black gay man who was HIV negative, decided to start PrEP after finding out his partner had been infected while sleeping with someone else.
“I am realistic about my sexual practices”, he explains. “That’s why I decided to start PrEP”.
He is being treated at the Whitman-Walker Health Center in Washington, where a system has been put in place to facilitate affordable access to treatment. Patients without health insurance are put in touch with professionals who can best inform them. The goal: that they can come out the same day with medication.
This center began to treat gay men in the 1970s. “We were the first to respond to the AIDS epidemic in Washington”, explains Juan Carlos Loubriel, manager at Whitman-Walker.
“There was so much shame at the start”, tells AFP SaVanna Wanzer, a black transgender woman, infected in 1985 and former member of the board of directors of the center. “You were treated like you were less than nothing.”
Few people knew at the time how the disease was transmitted, and she remembers patients left alone in rooms to die there, “Their meal trays stacked in front of their door”.
At the time, the goal at Whitman-Walker was for patients to die with dignity. But today “We have instruments that we did not have in the past”, said Juan Carlos Loubriel. “We can treat people like people and help them take care of their health.”