Gone are the days when people with HIV went to an immunologist who simply did their best to manage the illness for as long as they could.
Now, people with HIV—even those who contracted it in their twenties—are growing old and need to be treated and monitored for conditions that come with aging. Primary care has never been more important.
New guidelines released by the HIV Medicine Association of the Infectious Diseases Society of America call for those treating patients with HIV to regularly check for diabetes, cholesterol, and osteoporosis. They also call for screening patients for sexually transmitted diseases and asking about their sexual history.
“As the survival span of HIV patients is really getting much longer, we are now realizing that these other primary aspects of HIV care are part of the purview and responsibilities of the HIV specialist,” Dr. Michael Horberg, one of the of the authors of the guidelines, told Healthline. “Patients don't want to go from one doctor to another doctor to another doctor. So really, the HIV specialist is the primary care provider.”
Providers Need to Educate Themselves
Conversely, primary care providers who are not HIV specialists need to better educate themselves about treatment, according to Dr. Judith A. Aberg, lead author of the guidelines and director of the Division of Infectious Diseases and Immunology at the New York University School of Medicine.
Horberg, who serves on the Presidential Advisory Commission on HIV/AIDS and is director of HIV/AIDS for Kaiser Permanente, said it's important for doctors to be non-judgmental when asking patients about their sex lives.
“You don't ask leading questions, like 'Do you only practice safe sex?' You say, 'When you're sexually active, what does that mean? How many partners have you had? Are you monogamous?' Every doctor's got a series of questions in their mind that are open-ended but get the information they need,” he said.
The guidelines state that people with HIV need to be monitored for substance abuse and depression, two factors which may limit adherence to antiretroviral medications that suppress the disease. The guidelines call for HIV care sites to foster trusted doctor-patient relationships and assign a case worker, when possible.
Screen for Smoking and Other Health Risks
Doctors need to encourage patients with HIV to not smoke and eat right, just like everyone else, Dr. Kevin Carmichael told Healthline. “Now we know smoking does accelerate the progression of HIV, so it's time to revisit smoking and get people to quit. Patients have to believe that they can live a long time. To this day, when you see many new patients, they walk in with the idea that they're going to die,” he said.
While high cholesterol, diabetes, and osteoporosis are risks for all aging Americans, people with HIV may be at even higher risk. It is well known that statins, used to treat high cholesterol, do not interact well with antiretrovirals.
That makes regular wellness check-ups even more important, said Carmichael, chief of service at El Rio Special Immunology Associates. “There's a lot about living a long time with HIV that we don't know," he said. "We have to manage all the conditions of aging, and then you have HIV layered on top of it.”
The Changing Face of HIV
Carmichael said the face of HIV has changed tremendously since the 1980s, when young medical students like himself saw some of his own friends dying of a mysterious disease. “It was very compelling to a young person going into medicine,” he said.
In those days, many passionate doctors like himself started out as generalists but became HIV specialists. Many even traveled to Africa to learn more about the disease. “It was pretty easy in the beginning," Carmichael said. "You learned the meds as they came along, one at a time.”
But ultimately, HIV doctors back then focused on maintaining a decent quality of life for as long as possible for people with a terminal illness. “You don't feel the change every day, but when you look back 20 years, the change is really unimaginable,” Carmichael said.
He wonders who the next generation of HIV doctors will be. “You don't do a residency in HIV medicine,” he said. “Specialists want to be specialists, and generalists want to be generalists. I'm confident it will work out, but I don't know what it will look like.”
More than 1.1 million people in the U.S. are living with HIV, and about 18 percent don't know they have it, according to the U.S. Centers for Disease Control.