Charlie Sheen’s announcement reveals ‘ugly ogre underneath’ public awareness of HIV

Reactions underscore disease’s lingering stigma
Charlie Sheen
Actor Charlie Sheen announced Tuesday that he has HIV. Reactions show how far we still have to go to remove stigma, activists say. Photo by Todd Williamson / Invision / AP file

Media and online reactions to actor Charlie Sheen’s announcement Tuesday that he is HIV positive shows how far we have — and haven’t — come in the past three decades.

In 1985, movie star Rock Hudson became the first celebrity to go public about his HIV status. The medical progress since has been dramatic: A clearly ailing Hudson died of AIDS less than three months after he went public with his diagnosis at age 59. 

Sheen, healthy looking at 50, is taking lifesaving antiretroviral drugs that came into use a decade after Hudson’s death. As long as Sheen controls his virus with medication, he is likely to live a normal life span, his doctor said.

But the screaming tabloid headlines and shaming tweets that accompanied Sheen’s "Today Show" announcement are straight out of the '80s.

“We have medical achievements and epidemiological achievements,” said Michael Louella, who coordinates the community advisory board for defeatHIV, an HIV cure research consortium based at Fred Hutchinson Cancer Research Center. “That’s a different world from 1985. But the people who are making Charlie Sheen jokes, they don’t know this new world. HIV stigma is still a problem. It’s not really about Charlie Sheen at all. It’s about all of us and how we think about HIV. It’s still a bogeyman.”

Sheen, whose career meltdowns, struggles with addiction and domestic assault charges have also played out in the tabloids in recent years, said that he went public because he was being blackmailed by people who threatened to reveal his positive status. He said that he learned of his diagnosis about four years ago.

How far have we come, really?

We asked Fred Hutch experts and others to talk about Sheen’s announcement, what has changed in the medical field regarding HIV and what still needs to change to address both the virus itself and the stigma that surrounds many infected people.

The biggest change is obvious: Thirty years ago, with no treatment available, being infected with HIV meant almost certain progression to AIDS and an often-speedy death. That is no longer the case for those who have access to, can tolerate and regularly take antiretroviral therapy — and HIV-positive people who take their meds regularly also lower the chance of passing on the virus.

Antiretroviral drugs can also be used by those at high risk of contracting HIV to prevent infection. When used in this way, they are known as PrEP, or pre-exposure prophylaxis.

But what about Sheen’s statement to "Today Show" host Matt Lauer that it was “impossible” for him to infect others because his medication keeps his virus at undetectable levels?

“I wouldn’t go that far,” said Dr. Jim Kublin, an HIV researcher at Fred Hutch’s and executive director of the Hutch-based HIV Vaccine Trials Network.

Antiretroviral medication does keep viral loads low, leading to the slogan “treatment as prevention.” That said, some risk remains, and the U.S. Centers for Disease Control and Prevention says that the only sure way to avoid spreading the virus to others is to practice protective behaviors such as using condoms, reducing numbers of sexual partners and avoiding sharing needles and syringes.

Sheen also said that because he is on medication, his virus is in “remission.” Is that the best way to describe it?

Technically, no, according to Kublin.

“It isn’t by any means in remission, which usually has the connotation that you’re not taking any drugs or therapy to control the illness,” Kublin said. “The control of his infection requires daily medication. Without that daily medication, he would be at increased risk of progressing to more severe disease and he would also be more likely to transmit it to others that he exposed.”

That said, should we be paying so much attention to people like Charlie Sheen — aware of his HIV status and taking medication to control the virus?

A far bigger concern is the number of people who are unaware that they are infected or aware but not in treatment. According to the CDC, more than 1.2 million people in the United States are living with HIV infection, and almost 13 percent of them are unaware of their infection. Only about 40 percent are under medical care, and just 30 percent have the HIV virus under control.

Yet as deaths from HIV have dropped from the headlines, many Americans have been lulled into thinking the epidemic is over, at least in the United States.

“HIV hasn’t gone away,” said Kublin. Nor, he added, has the urgency for a vaccine.

What keeps people from being tested for and undergoing treatment for HIV?

Although Sheen’s diagnosis shows that anyone can be infected, he is not the typical face of HIV. Those hardest hit by HIV today are largely black or Latino, poor and often living in rural areas and in the South. Many of those affected may lack access to health care or distrust the health care system.

They also may be discouraged from being tested by the persistent stigma — what defeatHIV’s Louella calls “the slut-shaming and self-righteousness” seen in many online reactions to Sheen’s announcement.

“Nobody ‘deserves’ to have HIV,” said Louella. “[Anybody] can get HIV. It doesn’t matter what your character is. You could be a really good person. You could be a really evil person. It’s a virus. It doesn’t have anything to do with evil or good.”

According to Louella, the furor surrounding Sheen’s announcement will only make it harder for others to speak out about being HIV positive.

“Stuff like this makes me think, ‘Wow, even though we have tools to prevent HIV, we have treatments to keep it suppressed, we’re working on a cure, we’re working on a vaccine, there’s hope everywhere — but [we haven’t] touched the ugly ogre underneath,’” he said.

How do you think the experience of HIV has changed in 30 years? Tell us on Facebook.

Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.

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