Stigma still prevails for people living with HIV, NYC experts say

Charlie Sheen’s revelation on Tuesday’s “Today” show that he is HIV-positive has local HIV/AIDS organizations speaking out about the stigma that remains more than 30 years after the epidemic started.

Kelsey Louie, CEO of Gay Men’s Health Crisis, who also serves on Gov. Andrew Cuomo’s task force to reduce the number of new HIV infections to 750 by 2020, said he’s pleased the initial response to Sheen’s announcement seems to be positive and “showing signs of compassion,” especially on social media.

“We fear the media will create HIV hysteria which will further create shame and stigma,”Louiesaid. “I think it’s important to populate media with facts and appropriate information” on treatment options and medicationssuch as PrEP and PEP.

While new cases of HIV and AIDS are declining across New York, there were 50,000 new cases in 2014 nationally and the number of new cases have stayed stable, according to the CDC.

“The difference [from 30 years ago] is we have the data and the tools to end the HIV epidemic … what hasn’t changed much is the shame and stigma still driving the epidemic, getting tested, disclosing and accessing treatment,” Louie said.

Numbers for the first half of 2014 show 1,350 new HIV diagnoses and 783 deaths, according to the city’s health department. In 2013, there were 2,832 new HIV diagnoses and 1,784 new AIDS cases.

When the numbers were released, Dr. Demetre Daskalakis, assistant commissioner of the city’s Department of Health and Mental Hygiene, told Metro the “belly” of the epidemic is under control and the health department is focusing their efforts on at-risk groups including minorities and young people.

“Charlie Sheen’s experience is no different than anyone living with HIV,” said Sharen I. Duke, executive director of ASCNYC, a multi-service agency that assists people at-risk or living with HIV/AIDS. “Stigma continues to be a challenge, and I think anybody who stands up and says they are HIV positive are brave and important to fighting the stigma that continues to persist.”

Duke said that 30 years into the AIDS epidemic, she now has a client who says “I’m not living with HIV, HIV is living with me.”

“That’s what we need to talk about, people with HIV are everyday New Yorkers, making positive changes in their own lives and communities, getting healthy and getting their lives back on track” Duke said. “World AIDS Day [December 1] is a really important opportunity to use Sheen’s story as a platform about how we can match resources and knowledge to work toward the end of the epidemic. People need to know their status.”

A 24/7 HIV/AIDS hotline is available at 800-628-9240.