Charlie Sheen, human, announced Tuesday that he did a very human thing — he caught a virus. That particular virus, human immunodeficiency virus or HIV, is living inside the bodies of an estimated 35 million people worldwide. In the United States, 1.2 million people are living with HIV and the U.S. fails to prevent about another 50,000 infections every year.
As Sheen discloses his status, headlines will flood our Facebook feeds and Twitter timelines and many of them will be stigmatizing. This is no one's particular fault. HIV stigma is something we are taught. But as you encounter headlines and stories about Sheen, it's important to bring knowledge to them that will help you cut through the myths and get to the facts.
1. This was not an "AIDS cover-up."
HIV and AIDS are not the same thing. HIV is a virus and AIDS is a diagnosis that people who have very low T cell counts receive. Until Sheen discloses his T cell count — which he has no obligation to do — we cannot use the word AIDS in relation to his story.
People very rarely "cover up" their HIV status to lie. HIV stigma — negative, unfounded ideas about HIV — keeps many people from testing, knowing their status and disclosing their status. In a world where people like Cicely Bolden are stabbed to death for disclosing, choosing not to disclose may be an act of self-preservation.
2. HIV isn't the result of promiscuity.
Bodily fluids — semen, pre-ejaculate, vaginal secretions, breastmilk and blood — carry HIV, yes. And it's through contact with these bodily fluids that HIV is transmitted and acquired. If bodily fluids do not contain HIV, there is no risk for HIV transmission. Many people who engage in condomless sex do so at no risk for HIV. In fact, our parents engaged in condomless sex to birth us.
3. Sleeping with people living with HIV does not automatically put one at risk for HIV.
HIV lives in bodily fluids. People with HIV who are on successful HIV treatment have a drastically reduced amount of HIV in their bodily fluids. This is called being undetectable.
Currently, only 30% of HIV-positive Americans have an undetectable viral load. What stands in the way of being undetectable? Poverty, stigma, hunger and racism for a start. Being undetectable requires that people take either one or several pills every day. In the future, there may be options for people with adherence troubles, but there is no such current option.
When a person has an undetectable viral load, their chance of transmitting HIV is drastically reduced. In one study, thousands of mixed-status couples who sometimes had sex without condoms never transmitted the virus because the HIV-positive partner had an undetectable viral load.
4. HIV is not particularly "deadly" any more.
In the context of the United States, there is no reason to label HIV as a deadly virus anymore. Those 1.2 million people living with HIV in the United States are living. Many of them are living long, successful lives. In fact, if a person living with HIV catches their virus early enough and begin treatment, they're expected to lead an average life span.
5. This is also not an opportunity to shame drug users.
While Sheen does not have a history of injection drug use, he does have a history of crack and cocaine use. Often, drug use, condomless sex and depression form a vicious cycle. To know that Sheen is a drug user does not mean he is someone who did something to deserve HIV. Rather, he is someone who is often uncared for in the United States.
The federal syringe exchange funding ban is still in effect. This means there's less access for those who do use injection drugs to be able to do so safely. Also, syringe exchanges often link those who use needles into mental health programs. In the spring, when Indiana experienced a devastating HIV outbreak, the governor listened to public health officials and instituted a needle exchange — for 30 days.
6. HIV affects families.
Sheen is a father. Many fathers, straight or gay, get HIV. (My straight father was one of them.) Whether Sheen is a "family man," he is a man with a family and every family is affected by HIV differently. The Recollectors is a community of people who have coalesced to share stories about how HIV affected their families. Reading some of their stories may help in framing how this is not just one man's story. This is a family story.
7. This is a time to talk about people over 50 living with HIV.
Any day now, more than 50% of the people living with HIV will be 50 or older. In fact, POZ magazine just released a list of 100 influential long-term survivors — people, many over 50 — who have lived with the virus for over 20 years. As people with HIV live longer, challenges of living with HIV will be complicated by other conditions associated with old age.
8. Sheen is about to become the most high-profile person living with HIV in the world.
Along with Earvin "Magic" Johnson, Sheen is now the most famous person to have disclosed his HIV-positive status. With that comes the numerous rumors about his health the average person does not have to worry about. While most people with HIV get to think about their status on their own terms, Sheen will learn about his health on a national stage. As we saw with actor Danny Pintauro's recent HIV status disclosure, Sheen's narrative will not be under his control.
9. We shouldn't be so quick to assign anyone the job of being the "face" of HIV.
As a white, heterosexual man living with HIV, Sheen will face the double-edged intersectionality sword much like the delicate dance Caitlyn Jenner learned to perform. Sheen is living with HIV, a stigmatized disease. However, as a white heterosexual man, he is in a different category from transgender women, who are 49 times more likely to have HIV than the general public, or young gay black men, who are about 20% of all new HIV infections. However, Sheen's experience is still precarious. Many heterosexual men report feelings of being "invisible" in the HIV community.
10. People with HIV have unjust interactions with the criminal justice system.
We know Sheen has had several encounters with the criminal justice system. However, after his HIV-positive disclosure, he may face more serious jail time. People with HIV face legal discrimination, whether it's mistreatment from police forces to extended jail sentences. About two-thirds of states in the United States have HIV-specific statutes that can land people with HIV in prison for "nondisclosure" or transmission or exposure.
Currently, college wrestler Michael Johnson is serving 30 years in prison for consensual sexual encounters. The same is true for Kerry Thomas, who used a condom, had an undetectable viral load and did not transmit HIV. Because disclosure is hard to prove and HIV stigma is real, those with HIV are often thrown in prison, even if they were in long-term relationships. Sean Strub, executive director of the Sero Project, directed a short film about this phenomenon called HIV Is Not a Crime.
10. Sheen hung out with sex workers — but leave them out of this.
Sex workers, like the rest of us, do not want to acquire HIV. Many sex workers, but not all, who are part of formal networks, like porn studios or escort websites, do have support systems and ways to negotiate condom use. For those sex workers who cannot negotiate condom use, they need more services to allow them to learn their status, not more stigma. But for now, we're talking about Sheen, not the sex work industry.
Julie "JD" Davids, award-winning activist and managing editor of HIV news website TheBody shared this message on her Facebook page Monday, in anticipation of this news.
Stigma is perpetuated by people, but it is often done so passively. Written in 1983, the "Denver Principles," written by a group of people living with HIV at a conference in Denver, recommends we "not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles." The document ends with the powerful declaration that, at a time when an AIDS diagnosis was often fatal, that we allow people with HIV to "die — and to LIVE — in dignity."
Correction: Nov. 17, 2015
An earlier version of this article misstated the number of people who have HIV worldwide. The World Health Organization estimated in 2013 that 35 million people were living with HIV. 39 million is the estimated number of total deaths from HIV since the beginning of the HIV epidemic.
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