Here's Why Some People Go Off Their HIV Meds and Why That's a Really Bad Idea

Charlie Sheen said he quit taking his antiretroviral drugs for a period of time. While that sounds shocking, it's not unheard of.

At first glance, Charlie Sheen’s recent decision to go off his HIV medication—and travel to Mexico to pursue a cure instead—seems almost unthinkable. (The actor said on a pre-taped segment of The Dr. Oz Show Tuesday that he had stopped taking his meds for about a week, but didn’t reveal what kind of alternative treatment he was receiving in the meantime.)

Before Sheen went to Mexico, he was on antiretroviral therapy to keep the HIV virus from multiplying. It’s hard to understate the importance of these drugs: They not only help keep the immune system healthy, but also lower the risk of transmitting the virus to others. In fact, at the time of Sheen’s exclusive interview with the TODAY show in mid-November, he said he had “undetectable” levels of the virus in his blood. (After he stopped taking the drugs, his numbers went up, he told Dr. Oz.)

When people with HIV don’t take antiretrovirals, they might expect to live for about 6 months, says Larry Corey, MD, a principal investigator for the HIV Vaccine Trials Network at the Fred Hutchinson Cancer Research Center in Seattle. If they take antiretrovirals, they can live for about 40 years.

Seems like a no-brainer, right? Well, it’s not always that simple. In fact, a 2011 global meta-analysis found that only about 3 in 5 people take at least 90% of their prescribed antiretroviral drugs.

The truth is, there are a few reasons why people might stop taking these meds. But unless you’re in someone else’s shoes, they can be hard to understand, says Ken Ho, MD, an instructor of medicine in the division of infectious disease at the University of Pittsburgh. Here, we break them down:

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“Treatment fatigue” can set in.

Since there’s no cure for HIV, treating the virus is a life-long process. Translation: You have to take medication every day, forever. Not only that, but you also have to schedule appointments with your doctors and refill your prescriptions, too.

Now we know what you’re thinking: That’s a small price to pay for a pretty big benefit. Fair enough—but just think about how your schedule would look if you suddenly added a bunch of doctor’s appointments and pharmacy visits to your already-jam-packed schedule.

It’s the difference between dealing with an acute illness, like a cold, and a chronic illness, like HIV, explains Dr. Corey. Oftentimes, people are used to catching a bug and feeling sick until they fight it off. It’s different when you have a condition like HIV—especially because while you’re on your meds, you can feel healthy. “But [chronic diseases] are always one step ahead of you,” he says.

Some of the drugs can have side effects.

In the short-term, the meds may cause nausea, diarrhea, headaches, dizziness, fatigue, and more. Long-term side effects include insulin resistance and a loss of bone density. But Dr. Ho says that some of the short-term effects can fade with time; doctors can also prescribe other meds for the queasiness.

It can be emotionally draining to take meds every day.

Research has shown that people with severe depression are less likely to adhere to their antiretroviral therapy. Others may simply not want to be reminded of their HIV-positive status every day, says Dr. Ho. “There’s still some shame and a fear of stigma associated with the disease.”

That said, antiretroviral therapy is the best way to treat the HIV virus—and you have to stick with it. Taking a “drug holiday” is actually dangerous, according to the Centers for the Disease Control and Prevention. Not only can that give the virus a chance to multiply, but it also can cause drug resistance, too.

“It’s natural that people want to be cured,” says Dr. Corey. But no one should disregard one of the most important medications we have—especially not for a false hope.

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