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Stigma, complacency still attached to HIV/AIDS

CHARLESTON, W.Va. -- Brandon was in his early 20s when he got the life-changing diagnosis -- he had HIV.

A part-time employee at a bar, Brandon (not his real name) said his first concerns were financial.

"The first thing I thought was that I can't pay for it," he said.

Then he worried about dying, although he knew, with modern medicine, HIV patients can live longer lives than before. He thought, "Why go back to college now?"

"Now I'm finishing my bachelor's degree like any other 24-year-old that doesn't have one," he said this week.

Brandon, who asked to remain anonymous because of the stigma attached to HIV, is one of about 70 West Virginians each year who are newly diagnosed with HIV, based on recent figures from the state Bureau for Public Health.

Between 2008 and 2010, 70 was the average number of new cases each year in West Virginia.

On Saturday, people around the world will mark World AIDS Day by remembering those who live with the disease and those who have lost their lives to it.

According to estimates from the U.S. Centers for Disease Control and Prevention, about 50,000 Americans are diagnosed with HIV each year. The majority of the new infections are among gay and bisexual men, according to the CDC.

Being from a small West Virginia town, Brandon said, one of the most difficult aspects of being diagnosed with HIV was telling his family members. They had known he was gay since he came out to them at 16.

"When I told her this, my mother immediately thought she was going to outlive me," Brandon said. "She was 48 and she's thinking, he's going to die in his 30s."

There's no cure for HIV/AIDS. Patients receiving medication to fight the virus still live an average of 11 years less than a person without HIV/AIDS.

Brandon's eligibility for the AIDS Drug Assistance Program, which helps those with HIV who are uninsured and underinsured, took care of his financial concerns.

However, the diagnosis has still made a major impact on his life.

Brandon worried that, if people knew, they would not want to buy drinks from him at the bar where he worked.

"I've heard of people who are waiters who don't tell people," he said. "They don't want it known, because there's such a stigma."

While treatment has progressed, those who work closely with the AIDS community say the stigma about the disease has not changed much over the years, especially in West Virginia.

Dave Bennett, health-action program manager for Covenant House, blames ignorance for the stigma.

"You say AIDS, and they haven't gotten out of that late-'80s fog," Bennett said. "They're still living in that. I just don't know where to begin, because people have to want to be educated.

"You can offer a clinic and people aren't going to go because they think, 'I know all about that.'"

Covenant House has offered housing assistance to HIV/AIDS patients since the late 1980s. Today, the organization also offers free HIV testing, an HIV/AIDS support group and a smoking-cessation class aimed at those in the lesbian, gay, bisexual and transgender community.

Michael Vincent, who heads up the AIDS Residential & Resource Program for the organization, said that because people sometimes shun those with AIDS, he's careful where he meets with clients.

"Even among their family members, I have to make sure with the client that other people in their household know, because sometimes they don't," Vincent said.

An intolerance of the LGBT community adds to the stigma, said Ellen Allen, executive director of Covenant House.

"You have the disease and then overlay that with a very fundamentalist -- in some ways evangelical -- attitude that it's a gay disease," Allen said. "So you have the disease but you also have the ignorance and intolerance."

While gay and bisexual men still make up the majority of Americans with HIV/AIDS, the black community as a whole is the ethnic group most affected by the virus, according to the CDC.

As of 2009, black Americans accounted for 44 percent of all new HIV infections, despite representing only 14 percent of the U.S. population, according to the agency.

The disease affects every demographic, though, Vincent said.

"There are groups that carry more of the burden than others, like African-Americans and gay men, but I've got people who are rabid NASCAR fans, I've got a lot of married couples, I've got college students -- they really are all over the ball park," Vincent said. "It throws your stereotypes out the window."

Because AIDS patients are living longer on medication, Brandon said, he's noticed complacency about getting it among young people.

"The complacency is that, 'Oh, I can take a pill. It's not a big deal anymore,'" he said. "It's a very big deal. It's a very expensive deal, more than anything."

While Brandon has no financial burden, he knows other patients who pay a $500 co-pay for three months of the medication, he said.

It's not only the money, though. People's lifestyles change when they get HIV/AIDS, Brandon said.

"It's like living with diabetes," Brandon said. "Someone learns to live with that, but there are plenty of other people out there who don't have to worry about eating that piece of cake."

Rather than cake, though, people with HIV have to worry about cutting their hand open or telling someone they're dating about their illness.

"Every relationship, eventually, is possibly going to put that person at risk," he said.

It's difficult to tell someone he cares for about the disease, Brandon said. They sound sympathetic, he said. Some don't call him anymore.

"[They say], 'Oh I'm so sorry. You sounded like such a great person,'" Brandon said. "Oh, I sounded like such a great person -- and now I don't?"

Covenant House workers say consistent testing for HIV is the most critical way of combating the disease. The infection takes six months to show up in your body.

"If you had unprotected sex last night and you get tested, you're results will not be true," Bennett said. "People are reactionary. That [test] is only going to answer for six months before. People think they're OK, and then they spread it."

Because of its history of working with HIV/AIDS patients, Covenant House will be the recipient of a Red Ribbon Award Saturday at a service marking World AIDS Day.

The service, scheduled for 6 p.m. at Asbury United Methodist Church on the East End, will be followed by a candlelight procession to the Living AIDS Memorial Garden, at the corner of Washington Street East and Sidney Avenue.

At 9 p.m., the Broadway nightclub on Leon Sullivan Way will host a 1980s-party fundraiser for the Living AIDS Memorial Garden. There will be a $5 cover for the party and people are encouraged to make an additional donation to the memorial garden.

Reach Lori Kersey at lori.kersey@wvgazette.com or 304-348-1240.


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