Actor Charlie Sheen said Tuesday that he reeled after he was diagnosed with HIV four years ago. “It’s a hard three letters to absorb,” he said on the Today show. But his disclosure comes at a time when it’s no longer a death threat to be diagnosed with the virus that causes AIDS.
STAT talked to prominent researchers and physicians to explore how much has changed in HIV prevention and treatment since the disease burst into public view in the 1980s.
From killer to chronic disease
In the early 1980s, before the first HIV drug, AZT, was developed, people were often diagnosed when they already had full-blown AIDS. They were generally dead within a year or so.
“We used to manage the demise of people with a life-threatening condition,” said Dr. Douglas Richman, director of the Center for AIDS Research at the University of California, San Diego, who has been treating patients with HIV and AIDS since the 1980s.
Advances in HIV medications have turned the infection from a killer into a chronic disease. “Today, we counsel patients about exercise, not smoking, weight loss, and all the other things you need to do for a normal, healthy life,” Richman said.
A patient who starts HIV treatment early can expect to live longer than a similar patient entering a diabetes clinic.
A 20-year old diagnosed with HIV today could live into his or her mid 70s, “which would give them almost — not quite, but almost — a normal life expectancy,” said Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases. “It’s like night and day. I mean, you go from a dreadful prognosis to a very, very favorable prognosis, if the person takes their drug and they do all the things they’re supposed to do.”
In fact, the life expectancy of someone who starts treatment early and takes his or her medications is longer than someone followed in a hypertension or diabetes clinic, said Richman.
Sheen’s physician, Dr. Robert Huizenga, told the Today show that his biggest concern for the actor is “substance abuse and depression from the disease, more than what the HIV virus could do in terms of shortening his life.” Huizenga, an associate professor of medicine at UCLA, said he expected the HIV would only minimally, if at all, affect Sheen’s life span.
Today’s treatment regimen is a breeze compared to even 20 years ago.
Fauci, an HIV researcher who has treated patients since the earliest days of the US epidemic, vividly recalls how their drug schedules used to dictate so much of their daily lives.
“They had to take drugs four, five, sometimes six times a day. … Some drugs with meals. Some drugs without meals. Some drugs with fluids, some drugs without a lot of fluid. Sometimes they’d have to get up late at night to take it,” Fauci said. “That’s all gone. Now you wake up in the morning, you take one pill.”
And that one pill is easier to take
HIV drugs were game-changers. But the early medications were not easy to tolerate. Side effects were substantial: Diarrhea. Nausea. Vomiting. Insomnia. Anemia. Bone loss. Metabolic disorders.
Some people stopped taking the drugs because the side effects were so gruesome. But today’s drugs are far less toxic, Fauci said.
Another advance: rapid diagnosis. It used to take a few days to test a sample of blood for HIV. Today, home tests can do this in 20 minutes.
New advice: Start treatment early
Treatment was once started only after HIV infection had already done some damage. The benchmark was the level of a type of white blood cell called CD4; treatment started when it dropped below 200 cells per cubic millimeter of blood (a healthy CD4 count is above 900).
Today, based on studies done by the National Institutes of Health, the World Health Organization recommends that treatment should start as soon as someone is diagnosed with HIV, no matter what his or her CD4 count is. The medication drives down the amount of virus in the body, keeping HIV from harming the immune system and lowering the risk the virus will be passed on to others.
Sheen said he was diagnosed after seeking medical attention for various symptoms, including crushing headaches and night sweats. It’s unclear exactly when he started treatment, but he did say he’s been taking medications; in fact, he said one of his partners took a picture of the drugs and tried to sell them to a tabloid.
His doctor also appeared on the Today show and said Sheen’s HIV viral load has fallen to undetectable levels, which is common when patients respond well to the medication.
Such a low viral load reduces, but does not eliminate, the risk of transmitting HIV to other people through bodily fluids.
HIV positive people face risks beyond AIDS
HIV infection used to lead to AIDS; AIDS almost inevitably led to death. But today, HIV-positive people who take their medications often die of other conditions.
They tend to have a higher rate of certain illnesses, including cardiovascular disease and some types of cancer, than people of a similar age who are HIV negative, Fauci said.
There’s a higher rate of kidney disease, too, and higher rates of hepatitis B and C. (The hepatitis infections are not a consequence of having HIV. They, like HIV, are contracted through unsafe sex, intravenous drug use, or a transfusion with tainted blood.)
Prevention is possible; so is sex
Condoms and abstinence were once the only two ways to prevent the spread of HIV. Today, medication can stop the virus from becoming established in the body if it is taken soon after the infection occurs. This is called post-exposure prophylaxis.
Sheen told the Today show that he’s had unprotected sex with two partners since his diagnosis. He said he told them of his status and made sure they saw his doctor. They “were completely warned ahead of time,” he said.
Many people with HIV are “having a normal sex life. No doubt about it.”
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases
The Centers for Disease Control and Prevention says that it’s also possible for people without HIV to take medication to keep them from contracting the disease. This strategy, called pre-exposure prophylaxis, is only recommended for those at high risk of infection. That would include people in a relationship with an HIV-positive partner, individuals who have risky sex, or those who inject illicit drugs or share drug paraphernalia.
These options have made sex less of a gamble for people living with people living with HIV.
“There are thousands of people who are on therapy and using condoms and appropriately safeguarding against the risk of infection that are having a normal sex life. No doubt about it,” Fauci said.
Still no vaccine
Vaccines are an effective weapon against infectious diseases. But even though the search for an AIDS vaccine started in 1987, three years after HIV was identified as the cause of AIDS, the goal remains elusive.
The stigma persists
Despite all the advances in understanding and treatment of HIV, Sheen made clear he still viewed his diagnosis as a stigma, to be kept quiet at all costs.
Sheen said he’s paid out millions in hush money in recent years to prevent people who had learned about his HIV status from leaking that information. The actor said he came forward on Monday to stop rumors and “attacks,” including allegations that he’d knowingly put sexual partners at risk.
“I think I released myself from this prison today,” he said.