When antiretroviral therapy first arrived in the mid–1990s, people living with human immunodeficiency virus (HIV) required highly specialized care that demanded an awareness of the latest treatment agents, common drug-drug interactions and other HIV-associated complications and infections. This complex care was best handled by infectious diseases specialists, who had the specialty training and knowledge needed to give each patient the best chance at survival.
Today, a typical HIV clinic visit in the U.S. for a person living with HIV involves few decisions regarding specialized therapy and infections associated with HIV. In fact, most patients present with concerns that aren’t related to HIV or even infectious diseases.
With more than 85% of people in the U.S. who are receiving HIV medical care now having viral loads that are undetectable thanks to the success of antiretroviral therapy, the question becomes: Who can provide the best care for these patients, especially when it comes to primary care?
According to a 2018 study published in AIDS Care, 75% of ID specialists who reported treating people with HIV acted as their primary care physician. In a 2020 survey of U.S. primary care providers (PCPs), only about 1% reported providing care to people living with HIV, but more than half indicated that they could feel ready to manage HIV care with additional training.
The answer to this debate may never be straightforward, but there are factors to consider when thinking about the best route of care for individuals living with HIV.
CHALLENGES FOR ID SPECIALISTS
While people with HIV now have a life expectancy that’s similar to people without HIV, this population is more likely to develop (at an earlier onset) other chronic conditions, such as hypertension, cardiovascular disease, mood disorders and chronic kidney disease, compared to people of a similar age who don’t have an HIV diagnosis. This can present a challenge for ID specialists, who may have a low volume of primary care experience and who don’t focus on general medicine during their subspecialty training. For this reason, generalists may be better versed in screening, prevention and management of non–ID-related conditions.
“One of the biggest challenges for ID doctors who do HIV primary care is staying up to date in general medicine. How many of us can really provide state-of-the art care for adult-onset diabetes, given all that’s changed in the past decade?,” said Paul Sax, MD, clinical director of the Division of Infectious Diseases at Brigham and Women’s Hospital and professor of Medicine at Harvard Medical School. “Increasingly, it’s diseases of aging we need to manage, not complexities of ART or HIV–related opportunistic infections. This makes the task very different from the way it used to be.”
As with providers in most specialties, lack of time to manage non-ID-related conditions is also a factor. ID specialists are frequently involved in other activities, including hospital–based ID, infection control, global health and antimicrobial stewardship and may not have the time to provide the full spectrum of care. Having PCPs with the experience needed to treat primary concerns for patients with HIV frees up time in ID clinics. This allows ID specialists to see a higher volume of complex cases, including those with multidrug resistance or advanced HIV disease with chronic non-adherence to treatments.
CHALLENGES FOR PCPs
While PCPs are up to date on the latest general medicine guidelines, HIV-specific primary care guidelines sometimes differ from those of the general population. Because people living with HIV are at increased risk of earlier onset of certain conditions, screenings may need to be performed more frequently than for people without an HIV diagnosis.
For example, guidelines from IDSA/HIVMA recommend a cervical PAP smear annually, while the U.S. Preventive Services Task Force recommends a PAP smear every three years for the general population. This presents a challenge for PCPs, who need to stay aware of changes in recommendations for both populations to provide the best care.
Because they weren’t trained in infectious diseases, PCPs may also lack the awareness to quickly identify and manage opportunistic infections, which could lead to delayed diagnosis and care. Providers in rural areas may also lack access to specialists with whom they can consult when necessary.
“I think that providers in solo practice, especially those who are somewhat geographically isolated, can struggle with finding a community of like-minded providers to bounce ideas, concerns or challenges off of,” said Jeanne Marrazzo, MD, MPH, FACP, FIDSA, director of the Division of Infectious Diseases at UAB Medicine in Birmingham, Ala. “That’s one of the benefits of organizations like HIVMA, which encourages involvement from all types of providers who provide care for people with HIV – not just ID specialists.”
ID specialists in general are in short demand, and not all of them provide care for people living with HIV. In 2019, the patient demand for HIV care outpaced the number of new specialists entering the field.
Expanding the pool of knowledgeable HIV providers among PCPs could help alleviate this shortage and make it easier for people living with HIV to make appointments. This is one reason why the IDSA Foundation offers its HIVMA Clinical Fellowship Program, which provides non-ID trained physicians with the most updated best practices for treating patients living with HIV.
“By virtue of training, I think ID physicians are the best qualified to provide HIV primary care. However, well-trained MDs or advanced practice medical providers such as PAs and NPs can certainly supplement the pool of HIV providers, especially in areas of shortage,” said Vladimir Berthaud, MD, MPH, CPH, FACP, FIDSA, DTMH, an HIV clinician at Meharry Medical Group and executive director of the Meharry Community Wellness Center.
“Rural communities are disproportionately affected by the unequal distribution of ID physicians,” he continued. “PCPs who practice there are dedicated to these underserved populations. Training them to provide HIV care would meet a great need, especially in the rural South.”
For more complex cases, PCPs could establish a line of communication with ID specialists via telemedicine, Dr. Berthaud added.
Managing HIV care in a primary care setting can also help reduce the stigma that has long plagued people with HIV by helping to “normalize” the condition.
“Empowering PCPs to effectively manage HIV care goes a long way toward ‘mainstreaming’ the condition of HIV,” said Dr. Marrazzo. “It becomes another medical problem that requires management, albeit with some special considerations.”
COLLABORATION IS KEY
While there are many factors to consider when it comes to where people with HIV might receive the best care, the consensus among ID specialists seems to be this: The best HIV care providers are the ones with experience and interest in treating this population, regardless of their training background.
“Not all generalists want to be HIV PCPs, and not all ID doctors want to be HIV PCPs either,” said Dr. Sax. “We need everyone to embrace care of people with HIV in a high–quality way – the same as for people without HIV.”
The answer to the debate may also lie with whomever the patient feels most comfortable. Many patients trust their ID physicians because they’ve often been caring for the patient for several years. However, some patients may prefer the relative anonymity of receiving care in a primary care setting. Others simply don’t have the choice because they don’t have easy access to an ID specialist.
Quality treatment also may not be black and white – it may simply be that a combination of providers who have respective experience in ID and general medicine can provide the best care.
“Viewing this as a community of providers dedicated to optimizing care for HIV patients makes the most sense to me,” said Dr. Marrazzo, who noted that the relationship between the patient and provider is the most important consideration.
“At some level, we are all trying to do our best for our patients, and knowing that we are part of a like-minded group that recognizes the unique challenges people with HIV have faced – certainly historically, but unfortunately, persistently in many places and settings – can really help. Of course, it helps for knowledge sharing. But even more, it’s the spirit of taking care of people with HIV that is a shared honor.”