People living with HIV are getting older—and patient care needs to change with them

The number of aging people living with HIV (PLWH) is growing, thanks to advances and improvements in antiretroviral treatment. According to the latest Centers for Disease Control and Prevention (CDC) estimates, more than half of PLWH in the U.S. are over 50 years old, and by 2030, this number is estimated to be close to three-quarters of PLWH in the U.S.

But with an aging population of PLWH come challenges for health care professionals who find themselves in health systems with piecemeal approaches to care, as explored in the final piece of a special series on aging with HIV published in The Lancet HIV. TheBodyPro spoke with the study authors and other HIV professionals who offered key insights and strategies for providing comprehensive care to meet the rapidly changing needs of an aging population of PLWH.

Screen PLWH Earlier Than the General Population for Age-Related Diseases

Research shows that PLWH are diagnosed with age-related comorbidities unrelated to HIV at an earlier age than the general population. As such, clinicians may need to screen PLWH—especially long-term survivors—for diseases of aging at a younger age than they would screen patients without HIV.

“As we usher [people with HIV] into older age, they are at risk for the same set of noninfectious, chronic, aging-related conditions that we all face, including heart disease, kidney disease, liver disease, dementia, bone disease, diabetes, hypertension, and hyperlipidemia,” Frank J. Palella, M.D., an infectious disease specialist and professor of medicine at Northwestern University Feinberg School of Medicine, tells TheBodyPro.

Palella, who provides care to hundreds of people with HIV, says the easy part is talking about the HIV, but the visit shouldn’t stop there. He will tell his patients, “Yeah, your viral load [is] undetectable [and] your T cells are great, but let’s talk about the other things we need to talk about: screening for and managing high blood pressure, diabetes, weight issues, dementia, cancer of the prostate and colon,” he says.

Switch to a Collaborative, Team-Based Approach With Other Clinicians

Caring for older PLWH requires health care systems to move from a siloed approach to collaborative care, the Lancet HIV authors write. An older PLWH is likely to have many more health needs than one clinician can provide care for, according to Palella. “For example, polypharmacy is an issue as people get older, watching for drug interactions [between] HIV meds [and] hypertension, diabetes, or cholesterol meds,” he says. “How are the kidneys and liver being affected by [these medications]? It really does take a concerted number of people [with] all their fields of expertise.”

Palella adds that pharmacists, social workers, and other specialists who have responsibility and ownership over different aspects of care should be part of the team. “And work collaboratively in an environment in which the patient feels comfortable, not only with their [HIV] status but with their lifestyle and disclosing issues regarding sexual activity. It’s a big ask, but it’s doable,” he says.

Sean Cahill, Ph.D., director of health policy research at the Fenway Institute, tells TheBodyPro that a patient-centered medical home-health model would be ideal. Mental health providers should also be part of the team, he says, and are especially important for older PLWH. Unfortunately, mental health services often aren’t provided for this population.

“Some reasons [are] that many mental health providers don’t accept insurance, or if they accept insurance, they might not accept Medicaid,” Cahill says. “Even if you can find somebody who accepts your insurance, they don’t always have the cultural competency to be able to provide care to you.” And particularly for older PLWH, who are often long-term survivors and have suffered great stigma, trauma-informed care can be beneficial—but it’s not something every mental health provider can offer, Cahill says.

Tristan Barber, M.D., a consultant physician in HIV medicine at the Royal Free Hospital in London and co-author of the Lancet HIV paper, acknowledges that this team approach requires some logistical support from the hospital, clinic, or health system, but he says that coordination is crucial. Health care systems, he says, must “ensure money follows the patient, so that providers are remunerated for taking on any additional work.”

Let the HIV Specialist Take the Lead in Coordinating Care

Every team needs a leader, and every medical collaboration a coordinator. Who is ideally suited to take the lead in caring for older PLWH? Barber says that the HIV specialist is best equipped to be care coordinator for these patients, “even if they are not able to provide all aspects of complex care as people age.”

The reason an HIV specialist makes sense in this role, according to Palella, is that for many older PLWH, the HIV specialist is their primary care provider. “Whether it’s an infectious disease specialist or a self-identified HIV provider, the original contact with that provider was driven by the need for HIV care, as opposed to looking for a general health provider who happens to do some HIV. Really, the HIV was the leading edge,” he says.

But, Palella adds a caveat: “In Chicago and [some] other cities, much of the HIV care—particularly for men who have sex with men—ends up [in the hands of] primary care providers who have a large gay practice, who by virtue of that have become very well-schooled in the management of HIV.”

Barber has a recommendation for any HIV specialist who is coordinating care for PLWH. “Don’t have a one-size-fits-all approach to appointments. Some patients are stable and well; others have complex needs,” he writes.

Improve Communication Within and Between Teams

Coordinating care for a team requires clear communication. But providers who work with older PLWH say that the social dislocations caused by the COVID pandemic have had a negative impact on potential weak spots in the HIV care continuum, such as home care and transportation. “We see a lot of patients missing their appointments, and we just don’t hear from them,” Cahill says.

He adds that communication related to health care transitions is often inadequate—and getting worse. “Let’s say you have a patient who falls and goes into the hospital, and then after a few days [is] in a rehab facility,” says Cahill. “Normally, the hospital should be communicating with the primary care provider and then the rehab facility, and they should be making sure that the patient gets all the medications they need, and so on, including antiretroviral meds. But that kind of communication related to care transitions is certainly not as good as it was before the pandemic hit.”

These communication breakdowns are partly due to workforce issues, he says. After more than two years of a pandemic, health care workers are suffering serious burnout and hospitals are scrambling to find employees. Some health positions, like home care, are even harder to fill because of low wages. Those issues, Cahill says, could seriously affect the ability of health systems to adapt to better caring for older PLWH.

By Larry Buhl