By Brenda Goodman, MA
WebMD Health News
Charlie Sheen sought to put a positive spin on his HIV-positive status Tuesday, telling Today's Matt Lauer, “I have a responsibility now to better myself and help a lot of other people. Hopefully with what we're doing today, others may come forward and say 'Thanks, Charlie, thanks for kicking the door open, you know?'”
The 50-year-old actor said his illness started with “cluster headaches, insane migraines,” and night sweats. He said he doesn't know how he was infected. He said he's known about his diagnosis for about 4 years and has paid millions to others to keep his condition quiet.
He denied that he's ever put anyone else at risk. “I always led with condoms and honesty when it came to my condition,” he wrote in a letter that Lauer read on the air.
Sheen isn't the first celebrity to announce a positive HIV status.
Actor Rock Hudson became the first celebrity to go public when he announced he had AIDS in 1985, and died shortly thereafter. In 1991, NBA superstar Magic Johnson announced that he was HIV positive. In 1995, Olympic gold medalist Greg Louganis admitted being HIV positive in an interview with Oprah Winfrey.
We asked two infectious disease experts about Sheen's announcement and what it means in the era of effective treatment.
Joel Gallant, MD, is the medical director of specialty services at Southwest CARE center in Santa Fe, NM, and a spokesman for the HIV Medicine Association. David Rosenthal, DO, PhD, is the medical director at the Center for Young Adult, Adolescent and Pediatric HIV at North Shore-LIJ Health System in Great Neck, NJ.
WebMD: How significant is Sheen's announcement? Do you see an increase in the number of people who come for testing after a celebrity comes forward?
Gallant: We've certainly had celebrities who have announced that they're HIV positive in the past. And In some cases it has had a great deal of significance. Probably the best examples were Rock Hudson and Magic Johnson. Of course, those were different times, when HIV was a scarier condition with a much worse prognosis. It had a very big impact.
I think, in Magic Johnson's case, the fact that it was presumed to be due to heterosexual transmission made it a bigger deal for the general population. It often has a bigger impact when it's somebody famous who has acquired it through heterosexual transmission.
People view that as being more generalizable to the general population.
I think we saw that after Magic Johnson to some degree, especially in the African American community.
What's different since Magic Johnson's announcement is that we now recommend HIV testing for everyone, regardless of perceived risk.
This should be happening already, of course, it's not always happening. So everything we can do to get people tested is great, even if it means a celebrity announcement.
Rosenthal: About 1.2 million people in the U.S. are living with HIV, and about 1 in 8 (14%) don't know that they have it, according to the CDC. If [Sheen's] announcement does encourage people to come forward and get tested or get treated, that would be significant. Knowledge is power, especially when it comes to this infection.
WebMD: When Magic Johnson came forward more than two decades ago, having HIV was very dire. People wondered how much longer he might live. What does a diagnosis of HIV mean today?
Gallant: Well, HIV now is probably one of the most treatable chronic diseases that we have. The treatment is incredibly effective and virtually free of side effects and people who respond to therapy—which is anyone who takes their pills, essentially — can live a normal lifespan.
There may be some increased risk of complications over the course of that lifespan, but we have better treatment for HIV than for many, many other chronic diseases such as diabetes, congestive heart failure, rheumatoid arthritis, a lot of the diseases that people are a lot less afraid of than they are of HIV.
WebMD: Treatment used to be very cumbersome, too, with many daily pills that had to be very precisely timed. That's changed, too, hasn't it?
Gallant: Yes. Today we have lots of single-tablet regimens. Today, most people who are diagnosed will be put on one tablet a day, sometimes two, and the side effects are much, much less than some of the complex regimens of the past.
WebMD: As simple and effective as the treatment is, a lot of people still aren't getting it, though. According to the CDC, only 40% are prescribed antiretroviral therapy or ART. And only about 30% are being optimally treated so that the virus is suppressed in their bodies, meaning it can't be detected in their blood. Why are these numbers still so bad?
Gallant: Mostly it's because they don't know they're HIV positive. There's an estimate that 14% up to 20% of people in the U.S. who have HIV don't know that they have it. That's really a shocking number, especially when you consider that people are supposed to be tested at least once in any encounter with any medical provider, so both patients are not getting that done and in some cases it's doctors and other medical providers who aren't following that recommendation.
Then you have the people who know they're infected, but never got connected to health care or retained in care. That's another area where people tend to fall off. Some of it's due to economics and lack of insurance, especially in places without Medicaid expansion. Some of it is due to mental problems and substance abuse that get into the way of being retained in care. Once people are retained in care, we actually do pretty well.
WebMD: Is the medication still too expensive for many people?
Gallant: We have really good programs in the United States to get people on medication. Even in non-Medicaid expansion states, we have the Ryan White program which gets people access to medication, so that's not usually the issue. The issue is not being diagnosed, or not being retained in healthcare.
WebMD: Being on the medications is important for people who are infected, but also for people who may come into intimate contact with someone who is, right?
Rosenthal: Right. We now have a very effective medication—a combination of two antiretroviral drugs—that's highly effective at preventing people who are uninfected, but perhaps engaging in risky behaviors, from getting the infection. It's called PrEP, or pre-exposure prophylaxis. As long as it is taken correctly, it's more than 90% effective at preventing the spread of infection.
WebMD: Is there a stigma associated with being on that medication?
Gallant: In the beginning there was. It's mostly something that's used by gay men. There was this whole phrase that got coined, 'Truvada Whore.' Now people are sort of taking that back and getting T-shirts made and saying, 'Look, you can call me what you what, but I'm doing what I need to do to prevent HIV, so I should be congratulated, not shamed.' That kind of stigma is going away and I think part of it is that we're seeing just how effective PrEP is.
The only advantage condoms have, besides being cheaper, is that they prevent other sexually transmitted diseases. You can still get other infections on PrEP.
WebMD: What do you hope people will take away from Sheen's announcement today?
Gallant: Everybody is supposed to know their HIV status, and every doctor is supposed to know the HIV status of all of their patients. We're nowhere near that, but that's where we're supposed to be.
The most important way we can stop the epidemic is to treat everybody.