As NC Produces AIDS Breakthroughs, Change Reaches Patients Slowly
The biggest breakthrough in HIV research and treatment in a decade came from North Carolina, but do state residents with HIV benefit from the research yet?
By Rose Hoban
In his work for a funeral home, Freddy Whitted walks into a lot of churches in and around Roxboro, where he lives. Last year, he found himself in an African-American church where he noticed a flier on the bulletin board advertising support groups for people with diabetes and high blood pressure.
Whitted, an African-American who has been HIV-positive for 26 years, called the deacon to ask what about a support group for people coping with HIV? The deacon said no way.
“He told me that if a person had AIDS, it was because they were an abomination,” recalled Whitted. Then Whitted asked, “What about kids who might have been born with HIV?”
Whitted, who moved home to North Carolina three years ago after decades in New York and Philadelphia, said he wasn’t too surprised, but he was sobered by the exchange.
“Had I not been in New York when I was diagnosed, I don’t think I would have lived this long, because I don’t know if there’s any way I’d have gotten treated,” he said. “In New York, I could talk to someone who was taking the same medicines and get advice from them.
“But a person here who’s been recently diagnosed and there’s this much stigma? There’s no way they’ll talk to anyone about it.”
Whitted’s experience illustrates the sad paradox of HIV in North Carolina. Even as groundbreaking research about treating HIV comes out of institutions in the state, whether or not a person gets diagnosed, gets linked to a doctor and gets treated and supported throughout that treatment still depends largely on who they are and where they live.
Treatment as prevention
In May 2011, researchers from UNC-Chapel Hill published a paper that rocked the world of HIV/AIDS.
Findings from a large trial done primarily in Africa showed that if you treat people with HIV aggressively using antiretroviral drugs, their chance of transmitting the virus drops by 96 percent.
Essentially, aggressive treatment for people who already have HIV becomes the best way of preventing new cases.
It’s hard to overestimate the significance of the finding: It was proclaimed as the biggest scientific breakthrough of 2011 by Science, one of the world’s leading journals.
But even though the treatment-as-prevention approach came from North Carolina, it has yet to be implemented in many parts of the state.
Level of stigma ‘shocking’
“I think we have a unique level of stigma,” said Susan Reif, a researcher from Duke’s Center for Health Policy and Inequities Research.
Reif has done focus-group interviews with people in the Charlotte area and found the level of stigma surprisingly high for an urban area.
“People talk about living in another part of the country – Miami, New York – and they found the level of stigma here shocking,” she said.
Reif said often patients anticipate rejection if they speak up, and it prevents then from revealing their status, and finding support.
“People hear things said in their social circles and it makes them afraid to disclose. There’s a lot of secrecy about the disease,” said Reif, a social worker who has worked with people with substance-abuse issues for two decades.
“People are more willing to disclose a substance-abuse problem than HIV. The stigma around mental health is pretty high too, but I think HIV is the worst.”
“It depends on the community you live in,” said Carolyn McAllaster, an attorney with Duke’s AIDS Legal Project. “We get calls all the time in our legal project from people who were discriminated against in all kinds of ways because they revealed their status or someone revealed it for them.”
McAllaster said that stigma is often the reason people don’t know their status, especially for gay African-American men. And it’s worse in rural areas where there are few services.
Of North Carolina’s estimated 36,500 cases of HIV infection, probably 7,000 of those people don’t know their status.
“It’s awful. Something like 60 percent of African-American MSM” – the acronym for men who have sex with men – “don’t know their status, and that’s a function of stigma, pure and simple,” McAllaster said. “It’s multiple stigma; it’s probably layered: being African-American, and then gay, and then HIV-positive.”
Individuals resist stigma
Greensboro resident Alicia Diggs knows all about stigma; she faced it before and after she contracted HIV from her former husband 11 years ago. He knew he was HIV-positive throughout their one-year marriage, but never told her.
“Now I do tell people up front about my diagnosis,” said Diggs, whose viral levels are now at an undetectable level, thanks to treatment. She’ll be hosting an outreach and educational event on Saturday to celebrate World AIDS Day.
“I think people deserve to know my status, because I wasn’t given that chance. I risk the rejection, the stigma, but I’d rather do that than not tell,” Diggs said.
“And besides, how can I combat stigma if I hide it?”
Whitted also doesn’t hide his status, but he doesn’t advertise it either.
“I can handle it better because I’ve lived in other places, and I know it’s not like this everywhere,” Whitted said. “But if someone is being diagnosed here for the first time … I can’t imagine the emotional toll that it would have on them. Would they pursue treatment at all?”
Money helps chip away at stigma, cases
State health experts say that level of stigma has been one of the hardest things to combat, and it contributes to North Carolina’s high numbers.
Until recently, there have been few resources to address it, but the state Division of Public Health has recently received several federal grants to begin to do so.
Epidemiologist Del Williams from the Division said a new three-year grant will help public-health workers target young gay men, particularly in the African-American community. Key to doing that is creating “safe” places – both physical and virtual – where these young men can come to get advice and help.
One part of the project will provide online partner notification when someone is diagnosed with a sexually transmitted infection (STI) or HIV.
“We’ll be able to get messages to people who have been identified through online contacts as potentially having been exposed to HIV or syphilis,” Williams said.
Project counselors can provide online suggestions and counseling for the young men to seek testing and treatment services, overcoming some of the geographic barriers faced by many.
Another pot of money will be used to create confidential drop-in centers around the state – especially in underserved rural areas – where young men who have sex with men can come to get support and treatment.
“In the in the virtual world, you can be close to someone, but if you need to go somewhere and get treated and tested, in too many places we don’t have anything like that,” Williams said.
He said financial and policy support for STI clinics in local health departments has helped identify more people with HIV, in part because North Carolina is an “opt out” state.
“If you’re being screened for an STI, unless you tell them you don’t want an HIV test, you’ll get an HIV test too,” Williams said. “We see a lot of patients with STIs that are identified and end up treated for HIV.”
The state lab has beefed up its HIV testing capacity thanks to both state and federal funds, now performing more than 260,000 HIV tests a year.
“The lab has maxed themselves out,” Williams said. “They’re operating at capacity now.”
Correction: Alicia Diggs’ name has been corrected. An earlier version of this story gave her name as Alicia Giggs.
Tagged ADAP, AIDS Drug Assistance Program, Centers for Disease Control and Prevention, Division of Public Health, Duke AIDS Legal Project, Duke Center for Health Policy and Inequities Research, Durham County, Guilford County, HIV, HIV/AIDS, Mecklenburg County, North Carolina AIDS Action Network