Stigma, lack of advocacy contribute to continued HIV/AIDS epidemic
❝ I think any LGBT organization should see HIV as one of its top priority missions ❞
— Todd Heywood
A’meir Pendarvis, a 22-year-old student, is gay and HIV-positive. Recently diagnosed, Pendarvis is also a core group member at The PowerHouse Project, a Charlotte outreach and educational initiative that is working to educate black and Latino men who have sex with men (MSM) about HIV prevention and treatment.
For Pendarvis, The PowerHouse Project is a place that offers friendship and community.
“In a place like Charlotte, there’s a large, young population who have no idea what their identity is,” says Pendarvis. “In a place like this, you see different walks of the gay life and identities and find out who you are. It’s a safe place, where you can be who you are, no holds barred and no masks on.”
It is stigma and fear of HIV, even among the LGBT community, that necessitates the need for safe spaces like PowerHouse. That need, say local advocates, is a direct result of gaps in advocacy and education on issues of sexuality and health.
Recent statistics from the Centers for Disease Control and Prevention (CDC) and the state of North Carolina paint a clear picture of HIV’s impact today. Sixty-four percent of all new HIV infections in North Carolina in 2012 were among MSM. Locally, Mecklenburg County has the highest new infection rate. Nationally, infection rates for young MSM have skyrocketed, rising 22 percent from 2008 to 2010. And, projections released by the CDC show that as many as 10 percent of current college-aged MSM are HIV-positive. In 30 years, as many as half of those men will be HIV-positive. For African-American college-aged MSM, the numbers are more staggering; in 30 years, as many as 70 percent of them could be living with HIV.
Chelsea White is the director of programs at Charlotte’s Regional AIDS Interfaith Network (RAIN). There, she and her staff have seen firsthand the impact of the HIV crisis currently affecting young people like Pendarvis.
White and her colleagues are regularly encountering new clients in RAIN’s Empowering Positive Youth (EPY) program, which serves youth ages 13-24. Those young people, she says, aren’t receiving the sexual health education they need and teachers and advocates like RAIN aren’t allowed to provide it.
White and others from RAIN recently facilitated sex education talks with 500 eighth graders at one of Charlotte’s highest-risk middle schools. Local schools are now able to teach a more comprehensive, abstinence-based sex education curriculum, but White says it isn’t enough.
“It was more than we’ve ever been able to say in a public school, but we were still confined,” she says. “So, when we would say, ‘correct and consistent condom use,’ we’d get a hand up asking what is correct condom use. We weren’t allowed to answer that.”
Social pressures are keeping schools from adequately teaching young people about their sexual health, advocates say. Specifically, LGBT youth don’t receive information that could help them. The use of lubrication, for example, is an important preventative tool for MSM, says RAIN EPY Program Manager Jaysen Foreman. Yet, schools don’t teach it, even though using condoms and lubrication together can prevent accidents like condom breakage and failure.
“They want you to disseminate information, but they want you to be careful not to encourage [sexual activity],” says White, “but we all know that having the correct information actually deters the onset of sexual activity and increases the use of condoms when they do begin to engage in sex.”
That’s why Pendarvis and his peers appreciate the work PowerHouse is doing in Charlotte.
“A place like this is good for us to have raw, ‘no-lube,’ in-depth discussion about stuff otherwise we would not talk about,” says Pendarvis, smiling at his witty turn of phrase.
But, only a fraction of the young people now most at-risk for HIV may ever have access to groups like PowerHouse Project or Time Out Youth, another local LGBT youth group serving young people ages 11-20.
And, advocates say important advocacy and education messaging isn’t reaching young MSM, much less the general public.
“HIV/AIDS has become kind of old,” White says. “It’s not the new fab thing to donate to or to support and we’ve really seen that not only as an agency but also as a community. There’s not as much attendance not even at the fundraiser but just at the awareness events. There’s not as much buy-in from the community.”
The Rev. Debbie Warren, RAIN’s founder and president, says the decreased awareness and urgency from the LGBT community shifts the focus from community health to other issues.
“No one was talking about wanting the right to marry when I started RAIN,” she says.
In the 1980s, she says, straight society began to witness gay men taking care of their sick and dying partners, and all of the commitment, care and love that came with it.
“That’s when I think we saw the desire to legally marry take root,” she says, “and where we’ve seen an increase in that kind of activism for individual rights, I personally see less activism in terms of HIV/AIDS.”
AIDS service organizations are struggling with yearly uncertainty over funding, Warren says. Though groups like RAIN provide important services, they can’t also be the only resource.
“[It’s] a climate where we see so many HIV-positive youth and young adults coming forward who need broad-based support, not just the limited support of AIDS service organizations,” she says. “We need the broad-based support of activism, not only to keep these programs funded, but also advocating with our state and federal legislators.”
On the state level, North Carolinians have in recent years come together to place higher priorities on advocacy. Warren cites groups like the North Carolina AIDS Action Network, but says the HIV/AIDS advocacy community can’t carry the torch alone.
“AIDS service organizations have taken extraordinary hits through the recession and across the country a number of AIDS service organizations have closed, and certainly we’ve seen that here in our own community,” Warren says. “We’re working with a much more limited organizational base across our whole state.”
Roberto Olmo, RAIN’s bilingual program manager, says the larger LGBT community can step up and take on programs that complement the direct care AIDS service organizations provide.
“The biggest thing about HIV is not the disease itself, it’s about the stigma associated with it,” he says.
Other LGBT groups, and even gay business owners, could help with increased awareness campaigns to reduce stigma and fear.
“We have had difficulty compared to other major cities that I’ve been in being allowed to enter where the young MSM are — the nightclubs,” Olmo says. “A lot of clubs feel that we’d be killing their vibe if we came in and don’t want us in there distributing education on HIV/STD prevention and handing out condoms.”
It’s in those environments, White says, where young MSM — already at a higher risk for substance abuse — may face drug and alcohol use, which all the more contributes to increased chances of risky behavior.
Foreman adds, “They take full advantage of the community and their responsibility ends when they leave their club. You see it, very honestly.”
But, recently, access to local clubs has grown. Earlier this fall, Charlotte gay nightlife magazine Pocket Rocket, RAIN and the Mecklenburg County Department of Health partnered to begin providing free condoms. Their trademark “Protect Your Rocket Project” fishbowls are now in every gay bar, save one which already has a relationship with county health officials.
But, condoms and lube alone won’t prevent future infection rate increases. Messages like “use a condom” and “get tested” have been used for more than three decades. Those messages work for some, but not for all. So, at PowerHouse Project, staff are taking unique approaches to prevention. There, Behavior Intervention Specialist Jermaine Nakia Lee focuses on his clients as whole people.
“We’re convinced that prevention is about more than just using condom. There are a lot of social [factors] and self-esteem issues,” Lee says. “If people don’t have money, they might do some stuff to get money. If people don’t have a place to live, they might do some stuff to find a place to live.”
Donovan Brown, 29, is also a core group member at PowerHouse Project. Though he is HIV-negative, he says PowerHouse has provided him the affirming space he needed to learn more about all the prevention methods no one else ever taught him. And, he’s appreciative of the focus on whole health the project provides. It’s a focus he says more established LGBT leaders don’t have.
“In the LGBT community, it’s often thought of as the only thing we can catch is HIV,” Brown says, “[but,] there are a lot of mental health issues that go on with the LGBT community. That’s the biggest thing to me. A lot of people in the LGBT community have been damaged before HIV, just by growing up.”
The work of groups like PowerHouse Project are meeting a specific need, particularly among high-risk communities like black and Latino MSM. It’s work that national HIV advocates want to see expanded into the general LGBT community.
“I think any LGBT organization should see HIV as one of its top priority missions,” says Todd Heywood, a Michigan-based journalist and expert on HIV health, social and criminal justice issues. “When half of our community is getting infected or facing infection, we have a responsibility to stand up.”
Heywood says community groups, like PowerHouse Project already has, need to begin tackling HIV openly and quit treating the virus, people living with it and sexuality like a “dirty little secret.”
“I think that to be able to keep HIV on the forefront, you have to have everybody at the table and you think outside of the box,” says RAIN’s White.
HIV and prevention, advocates agree, must be a high-profile topic in the U.S. again. As it did during the early days of the AIDS Crisis, the LGBT community has the power to shape public opinion and advocacy. And, White says, all people should be accountable.
“I think that everybody needs to stand up and take more responsibility,” she says. “Just because the gay community is the hardest hit, does that mean they’re the only ones who can do something about it? No. Should they be at the table and doing something about it? Absolutely. Everybody needs to be at the table and everybody needs to have buy-in.”
The time to act, they say, is now.
“I think we are at a pivotal point right now in this whole discussion,” says Foreman. “If we do nothing, something bad is going to happen and we’re going to see a whole generation of people living with this disease for 60 or 70 years, unnecessarily because we can do something about it.” : :
more: Read more thoughts from local and national advocates in our special, online-only World AIDS Day coverage at goqnotes.com/lifepoz2013/.