H.I.V. Testing Stigma Drives Up Louisiana Infection Rates

A single mother waits a year after diagnosis before being treated for H.I.V. because she does not want people to know. A rape victim waits until symptoms appear before being tested. And a New Orleans newcomer hides from diagnosis for 17 years after his partner dies in 1990 in Washington, D.C.

Louisiana is ranked among the top states for H.I.V./AIDS transmission and has the second-lowest survival rates for sexually transmitted diseases. Stigma and a lack of sex education seem to be contributing factors, according to a nonprofit group at the forefront of serving that population.

Timothy Young, chief executive of the group, H.I.V./AIDS Alliance for Region Two, or HAART, addressed the high mortality among people in Louisiana living with AIDS.

Mr. Young said about a third of people tested statewide for H.I.V. had progressed to AIDS, and “that tells us that people are testing late.”

“And we believe that’s in large part due to the stigma of the disease,” he said.

Louisiana ranked third in estimated H.I.V. cases and fourth in estimated AIDS cases in 2011, according to data released by the Louisiana Department of Health and Hospitals this year. New Orleans ranked second nationally for H.I.V. cases and fourth for AIDS cases in the state. Baton Rouge, the state capital, was third nationally for estimated H.I.V. cases and fourth for estimated AIDS cases.

The report said 74 percent of people living with H.I.V./AIDS in the New Orleans metropolitan area are men, and 62 percent of people living with H.I.V./AIDS are African-American. In the Baton Rouge area, 82 percent are African-American, and 36 percent of those are women.

Survival data from the federal Centers for Disease Control and Prevention from 2002 to 2006, the most recent numbers available, support Mr. Young’s statement.

The CDC report indicated 75 percent of Louisiana residents with an AIDS diagnosis survived more than 36 months compared with a national survival rate of 83 percent for the same period.

“If you live across the Mississippi River from Baton Rouge, that’s a major area to get across,” said Mr. Young, whose nonprofit is tasked with securing a variety of services for people living with H.I.V./AIDS. “The only way you can get here is if it’s a friend or family member. And you may not want to share that because gossip spreads fast, and now everybody in town knows.”

That was the case for Sharon DeCuir, 46, of Baton Rouge, who now serves as HAART’s prevention manager. Ms. DeCuir said she contracted the disease from her second husband, who died in 2005. She said he told her his liver was bad, but nothing more.

“It’s sort of like you just settle, and sometimes you just don’t ask questions,” Ms. DeCuir said.

Ms. DeCuir was tested and given the diagnosis in 2002. But she waited another year before treatment because the nearest clinic was behind a public hospital close to her home. Ms. DeCuir said she did not want familiar faces to see her seeking treatment. She finally saw a notice about services at a community center and felt safe enough about her privacy to start the necessary medications.

Dorian-Gray Alexander, 52, said he got tested regularly before and after his partner died in 1992, and the results were always negative. But in 2004, he said, he was raped while on a business trip to California. Mr. Alexander was not retested until he became ill two years later, and was found to be H.I.V.-positive.

“The mixture of being raped and infected with H.I.V. had much more of an impact on me — not so much the H.I.V. part but just my shame of being a man who’s been raped,” said Mr. Alexander, who is now a policy fellow for the CHANGE Coalition and an at-large board member for the Louisiana AIDS Advocacy Network.

It took 17 years for Michael Weber, 58, to come to terms with the need for testing. Even after AIDS killed his boyfriend and ended their 11-year relationship, he said a diagnosis was a “death sentence” at the time, so he shied away from testing.

Encouraged by watching his friends receive H.I.V. testing, Mr. Weber was finally ready to face what he surely knew. He got himself tested, after moving to New Orleans, and the results were positive.

“It was kind of like hearing your mother died,” he said. “When I heard those words, it was frightening.”

“I kept my head in the sand for quite a long time after I tested,” Mr. Weber said. “But I also realized that I have the responsibility to give back. I’m one of the lucky ones.”

Mr. Weber realized he needed to take advantage of support groups and nutritional counseling, which were not provided at the Washington clinic used by his friends during its early years of treating the disease. He now works as the special events coordinator for the NO AIDS Task Force in New Orleans.

Mr. Young said Louisiana needs to see a change in public perception of the disease and the need for testing. That change comes from providing information. But legal barriers exist, he said.

The Louisiana Legislature has disallowed most components of sex education for adolescents — “the people who need sex education the most,” he said.

“They can’t even be asked about what they’re doing, so it’s literally a ‘head in the sand’ approach. There’s an old saying in Louisiana that goes, ‘Not a citizen is safe as long as the Louisiana Legislature is in session.’ ”

Rodney Thoulion, director of development for the NO AIDS Task Force of New Orleans, agrees that more education is needed.

“I think the growth spurt you’re seeing is because they really haven’t seen the effect of AIDS on people,” he said. “I’ve even heard people say, ‘Let me just get it and get it over with.’ ”

Representative Patricia Smith of the Louisiana Legislature has authored three bills to improve sex education in recent years, all of which have been rejected. Right now, she said, sex education in Louisiana is all about abstinence.

Ms. DeCuir said she has learned “disclosure means freedom.”

“At one time prior to disclosure, I thought disclosure meant ridicule, embarrassment and things like that,” she said. “But disclosure is actually freedom and having choice and living life.”

This post has been revised to reflect the following correction:

Correction: May 28, 2014

An earlier version of this article misstated the timeline of Ms. DeCuir testing and diagnosis. She was tested and diagnosed in 2002, not after her husband’s death in 2005.