It used to be that when someone was diagnosed with HIV, they went to an “HIV doctor.”
These doctors may have been primary care doctors who evolved to specialize in HIV. Or they may have been infectious disease specialists who went into that field to treat people with HIV. At any rate, for many years they simply prescribed the best HIV drugs available and focused on keeping the virus at bay.
But now it is a given that the virus can usually be kept under control. And the role of an HIV doctor is now in some ways the same as that of any primary care doctor, particularly if they care for aging patients. Discuss smoking cessation. Keep cholesterol in check. Screen for diabetes and osteoporosis. Encourage healthy living.
New guidelines released last year by the HIV Medicine Association (HIVMA) called for a meeting of the minds between infectious disease specialists and primary care doctors for this very reason. While it is still important to have a solid knowledge of HIV, particularly for primary care providers, it is equally important for traditional HIV doctors to focus on a patient's long-term health.
And now there's another new twist. HIV-negative people can take an antiretroviral medication called Truvada for PrEP, or pre-exposure prophylaxis, to prevent HIV infection. You must be HIV-negative to take the medicine, so you likely would not go to a traditional HIV doctor to get it.
A Shortage of HIV Doctors
Dr. Melanie Thompson, who serves on the board of directors of HIVMA, told Healthline there is an across-the-board shortage of experienced HIV doctors. “Infectious disease doctors are not necessarily becoming HIV experts. Some infectious disease fellowships do not offer enough HIV training, and some infectious disease doctors are not seeing a lot of people with HIV in their practices,” she said.
This issue has been amplified by the Affordable Care Act. There has been a shift toward managed care, and at the same time, more and more people are gaining access to healthcare. “There is a huge amount of work to be done, given the Affordable Care Act and changing structures within healthcare,” Thompson said. “These are issues we are trying to address as HIV specialists and policymakers. We are seeing opportunities to provide care to a lot of people who haven’t had care, and some of these people will have HIV.”
Many of the doctors who treated the first wave of people with HIV in the United States are nearing retirement, Thompson said. This makes it increasingly important to include HIV education in basic medical training and also provide HIV education to primary care doctors who are not currently HIV experts.
“We’re seeing more and more people with HIV because, happily, they are living and not dying, and because, unfortunately, there are still 50,000 new infections per year in the U.S.,” she said.
What Doctors Need to Know
Recent quality data on so-called cross-pollination efforts between HIV specialists and primary care doctors is not yet available, said Dr. Judith Aberg, also on the board of HIVMA and a professor of medicine at Mount Sinai Hospital.
“While not all primary care providers are HIV experts and familiar with specific therapies for HIV, the associated drug interactions, and specific guidelines for care, the same is true that not all HIV experts are familiar with all aspects of primary care and prefer to manage only HIV disease,” she told Healthline. “The actual percent of providers who are providing both primary care and HIV expert care is unknown, and as with all medical specialties, there lies a continuum of care.”
She said it is up to each provider to determine how much they know and what is beyond their scope. “The primary care guidelines serve as a tool to both primary care providers and HIV experts to not only provide guidance for them to manage their patients but also to but also to guide when they may need referral to one another and others,” Aberg said.
HIVMA also offers guidelines to health systems and third-party payers to help identify what qualifies a physician as an HIV care expert. In addition to board certification or significant clinical experience, the guidelines call for management of at least 25 HIV-infected patients during the past 36 months and at least 40 hours of HIV-related continuing education during that same period.
Aberg said HIV doctors don’t often see life-threatening opportunistic infections in HIV patients anymore. But they do see cancers, heart disease, and other issues related to inflammation, which is heightened in HIV-infected patients.
“This is why HIV patients really do need to have good primary care doctors,” Aberg said. “You really have to be attending to these different risk factors and you have to know prevention strategies.”
At the same time, people with HIV need doctors who are up on the latest HIV medications. For example, just last week the U.S. Food and Drug Administration approved Triumeq for the treatment of HIV-infected adults. The once-daily pill includes dolutegravir, abacavir, and lamivudine, three powerful antiretrovirals.
Antiretrovirals for the Uninfected: PrEP
Antiretroviral medications are no longer just for people with HIV. But a lack of knowledge among primary care doctors about HIV medications is making it difficult for people at risk for HIV infection to get a prescription for Truvada for PrEP.
Damon Jacobs, a marriage and family therapist in New York City, started a Facebook page last year for people who want information about PrEP. He became frustrated that so few people knew about the medication. Working for the Project Achieve HIV vaccine trials, he met many newly infected young men in their 20s in bars and nightclubs who told him they wish they'd known about PrEP.
Even after the U.S. Food and Drug Administration approved Truvada for PrEP, at-risk groups knew very little about the drug. That still holds true outside of America’s urban centers, based on comments made on Jacobs' Facebook page, which has almost 4,000 followers.
“Things are changing drastically from where they were,” Jacobs told Healthline. “That pill that prevents HIV is entering into everyone’s consciousness on some level, but the biggest obstacle is fear and ignorance among medical providers.”
People who post on the page have reported that doctors refuse to prescribe PrEP, saying it may lead patients to abandon condom use. But scientific evidence has proven the opposite, and even the U.S. Centers for Disease Control and Prevention is now recommending it as an option for high-risk groups.
But some men who take Truvada do admit that they prefer not to use condoms, which is exactly their reason for taking it.
In research published recently in the Annals of Behavioral Medicine, a researcher at the City University of New York showed that men often forego condoms in a relationship out of a desire for intimacy. Her research also demonstrated a strong desire among such men to take PrEP if it were made available for free.
“Sex doesn’t happen in a vacuum — interpersonal and relationship context really matter,” said Kristi Gamarel, now a psychiatry and human behavior postdoctoral researcher at Brown's Alpert Medical School, in a press statement. “Many HIV infections are occurring between people who are in a primary relationship.”
Taking Truvada to the Streets
Thompson said doctors not familiar with antiretroviral medications may not feel comfortable prescribing them. “There needs to be more broad-based education about PrEP. If we can get primary care providers more involved in HIV testing, maybe we can educate them at the same time about PrEP,” she said.
Some people seeking PrEP have taken it upon themselves to educate others at risk for HIV and even healthcare providers in their communities.
Such is the case with Bruce Kleinschmidt, a 62-year-old attorney in Louisville, Kentucky. He said he knows of no one in Louisville besides himself who is on Truvada for PrEP. He learned about the drug while flirting online with a nurse in Tennessee who is taking PrEP.
Kleinschmidt has a family filled with healthcare workers and, as an attorney, he is well-versed in research. He discussed Truvada with his family and looked around online before asking his doctor for a prescription.
“HIV/AIDS has left a huge scar on my life,” Kleinschmidt told Healthline. “I did volunteer work as a lawyer with men who were dying from the disease for many years. I stopped counting the deaths of my friends at 25.”
He went to see his doctors armed with information about PrEP. Unlike many gay men, he had openly discussed his sex life with his doctor. The doctor at first only wrote a two-week prescription to make sure there would be no harsh side effects. There were none.
“As I was leaving the appointment he had to make a bit of what I guess was a joke. ‘I just can’t believe you prefer having sex with men….’ I smiled and shot back, ‘Don’t worry doctor, you aren’t my type,’” Kleinschmidt said.
Of all his medical providers, only his psychiatrist had heard of PrEP when Kleinschmidt told them he was taking it. His optometrist, dentist, orthopedist, cardiologist, and allergist had no idea what PrEP was, he said.
Kleinschmidt has since met with several local AIDS service organizations. Together, they plan to do some Truvada for PrEP outreach at the local AIDS Walk event next month.