HIV+: While the Treatments Have Improved, the Stigma Remains


While HIV is now treatable, the stigma about the diagnosis remains. (Splash News)

When Magic Johnson revealed that he was HIV positive in 1991, he raised awareness about a deadly disease — seemingly a modern-day plague. When Charlie Sheen announced his HIV-positive status Tuesday morning (Nov. 17), he spotlighted a chronic, treatable condition, like diabetes and high blood pressure.

Clearly, HIV prognosis has come a long way in the past 24 years. But what hasn’t changed is the fear and shame attached to the virus, says Ellen Tedaldi, MD, director of Temple University’s HIV program.

“What’s not different is the stigma,” Tedaldi told Yahoo Health. “People still make a value judgment about who you are if you’re HIV-positive.”

Justin Goforth, a 49-year-old registered nurse and HIV educator in Washington, D.C., has informed more than 200 people that they’re living with HIV. “The universal fear is not, ‘I’m going to get sick and die a horrible death,’” Goforth told Yahoo Health. “The first fear is, ‘I’m going to be alone.’”

That was Goforth’s initial reaction when he learned 23 years ago that he was HIV-positive. “You feel you’re Typhoid Mary, tainted, not something others want to associate with,” he says.

Although public perception of HIV seems etched in stone, medical treatments and prognosis continue to improve. The disease — which, left untreated, hobbles the immune system and leaves the body vulnerable to infection — is no longer an automatic death sentence. People who get early, diligent treatment can live a normal lifespan.

Related: HIV’s Ability to Cause AIDS Is Weakening Over Time, Study Says

HIV treatment, which once required patients to swallow dozens of pills throughout the day, has been streamlined into one or two morning pills that prevent the virus from growing and replicating. Side effects, which formerly included humiliating incontinence and wracking gut pain, are today largely inconsequential.

Perhaps the biggest change is that the medicine that treats the disease can also prevent its spread. People who fear contracting HIV from, say, an infected partner, can take “PreEP” – Pre-Exposure Prophylaxis – which prevents the virus from taking hold in the body.

“We already have the tools to end the epidemic,” Goforth says. “If we can keep everyone alive, healthy, and from infecting others, we’re done.”

Related: Doctors Say Teen’s HIV in Check for 12 Years

However, the good news about the bad disease hasn’t spread. When HIV was wiping out everyone in its path, movies, books and plays such as “Rent” and “Angels in America” galvanized the public to push for research and funds to fight the scourge.

But although now HIV is chronic and treatable, the public somehow has missed the memo. It seems that de-fanging HIV is not compelling.

“How many films do you see about diabetes?” Teldadi says.

Goforth says the prevailing HIV culture is false, archaic, and dangerous, because enduring stigmas continue to keep infected people from getting tested and treated. “If people knew the reality of treatment today,” he says, “there would be a lot more people who would know their status.”

Read This Next: Charlie Sheen Reveals He is HIV Positive

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