DECATUR, Ga. — Malcolm Reid recently marked the anniversary of his HIV diagnosis on Facebook. “Diagnosed with HIV 28 years ago, AND TODAY I THRIVE,” he wrote in a post in April, which garnered dozens of responses.

Reid, an advocate for people with HIV, said he’s happy he made it to age 66. But growing older has come with a host of health issues. He survived kidney cancer and currently juggles medications to treat HIV, high blood pressure, and Type 2 diabetes. “It's a lot to manage,” he says.

But Reid’s not complaining. When he was diagnosed, HIV was sometimes a death sentence. “I’m just happy to be here,” Reid says. “You weren’t supposed to be here, and you’re here."

More than half of the people living with HIV in the United States are, like Reid, 50 or older. Researchers estimate that 70% of people living with the virus will fall in that age range by 2030. Aging with HIV means an increased risk of other health problems, such as diabetes, depression, and heart disease, and a greater chance of developing these conditions at a younger age.

More than half a million people

Yet the U.S. health care system isn’t prepared to handle the needs of the more than half a million people — those already infected and those newly infected with HIV — who are older than 50, say HIV advocates, doctors, government officials, people living with HIV, and researchers.

They worry that funding constraints, an increasingly dysfunctional Congress, holes in the social safety net, untrained providers, and workforce shortages leave people aging with HIV vulnerable to poorer health, which could undermine the larger fight against the virus.

“I think we're at a tipping point,” says Dr. Melanie Thompson, an Atlanta internal medicine physician who specializes in HIV care and prevention. “It would be very easy to lose the substantial amount of the progress we have made.”

People are living longer with the virus due in part to the development of antiretroviral therapies — drugs that reduce the amount of virus in the body.

But aging with HIV comes with a greater risk of health problems related to inflammation from the virus and the long-term use of harsh medications. Older people often must coordinate care across specialists and are frequently on multiple prescriptions, increasing their risk for adverse drug reactions.

'Dual stigma'

Some people face what researchers call the “dual stigma” of ageism and anti-HIV bias. They also have high rates of anxiety, depression, and substance use disorders.

Many have lost friends and family to the HIV/AIDS epidemic. Loneliness can increase the risks of cognitive decline and other medical conditions in older adults and can lead patients to stop treatment. It isn’t an easy problem to solve, says Dr. Heidi Crane, an HIV researcher and clinician at the University of Washington.

“If I had the ability to write a prescription for a friend — someone who's supportive and engaged and willing to go walking with you twice a week — the care I provide would be so much better,” she says.

The complexity of care is a heavy lift for the Ryan White HIV/AIDS Program, the federal initiative for low-income people with HIV. The program serves more than half of the Americans living with the virus, and nearly half of its clients are 50 or older.

“Many of the people aging with HIV were pioneers in HIV treatment,” says Laura Cheever, who oversees the Ryan White program for the Health Resources and Services Administration, or HRSA. Researchers have a lot to learn about the best ways to meet the needs of the population, she said.

“We are learning as we go, we all are. But it certainly is challenging,” she says.

The Ryan White program’s core budget has remained mostly flat since 2013 despite adding 50,000 patients, Cheever says. The Biden administration’s latest budget request asks for less than half a percent bump in program funding.

Local and state public health officials make the bulk of the decisions about how to spend Ryan White money, Cheever says, and constrained resources can make it hard to balance priorities.

“When a lot of people aren't getting care, how do you decide where that next dollar is spent?” Cheever says.

The latest infusion of funding for Ryan White, which has totaled $466 million since 2019, came as part of a federal initiative to end the HIV epidemic by 2030. But that program has come under fire from Republicans in Congress, who last year tried to defund it even though it was launched by the Trump administration.

It’s a sign of eroding bipartisan support for HIV services that puts people “in extreme jeopardy,” says Thompson, the Atlanta physician.

She worries that the increasing politicization of HIV could keep Congress from appropriating money for a pilot student loan repayment program for health professionals that aims to lure infectious disease doctors to areas that have a shortage of providers.

Many people aging with HIV are covered by Medicare, the public insurance program for people 65 and older. Research has shown that Ryan White patients on private insurance had better health than those on Medicare, which researchers linked to better access to non-HIV preventive care.

Some 40% of people living with HIV rely on Medicaid, the state-federal health insurance program for low-income people. The decision by 10 states not to expand Medicaid can leave older people with HIV few places to seek care outside of Ryan White clinics, Thompson says.

“The stakes are high,” she says. "We are in a very dangerous place if we don't pay more attention to our care systems.”

About 1 in 6 new diagnoses are in people 50 or older but public health policies haven’t caught up to that reality, says Reid, the HIV advocate from Atlanta. The Centers for Disease Control and Prevention, for instance, recommends HIV testing only for people ages 13 to 64.

“Our systems are antiquated. They, for some reason, believe that once you hit a certain number, you stop having sex,” Reid says. Such blind spots mean older people often are diagnosed only after the virus has destroyed the cells that help the body fight infection.

Funds to improve

In acknowledgment of these challenges, HRSA recently launched a $13 million, three-year program to look at ways to improve health outcomes for older people living with HIV.

Ten Ryan White clinics across the United States participate in the effort, which is testing ways to better track the risk of adverse drug interactions for people taking multiple prescriptions. The program is also testing ways to better screen for conditions like dementia and frailty, and ways to streamline the referral process for people who might need specialty care.

New strategies can’t come quickly enough, says Jules Levin, executive director of the National AIDS Treatment Advocacy Project, who, at age 74, has been living with HIV since the 1980s.

His group was one signatory to “The Glasgow Manifesto,” in which an international coalition of older people with HIV called on policymakers to ensure better access to affordable care, to enablepatients to get more time with doctors, and to fight ageism.

“It's tragic and shameful that elderly people with HIV have to go through what they're going through without getting the proper attention that they deserve,” Levin says. “This will be a disaster soon without a solution.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs atKFF — the independent source for health policy research, polling, and journalism.

Copyright 2024 KFF Health News

Transcript

DANIELLE KURTZLEBEN, HOST:

By the end of the decade, 70% of people living with HIV will be over the age of 50, according to researchers. That's due to advances in medicine. But aging with HIV comes with an increased risk of other health problems, and some experts worry failing to adequately care for this population could undermine decades of progress fighting the virus. Sam Whitehead from our partner KFF Health News reports.

SAM WHITEHEAD, BYLINE: Malcolm Reid stands in his kitchen in his house outside of Atlanta and pulls up a smartphone app that helps him keep track of all of his medications.

MALCOLM REID: 50.3 milligrams - that's my HIV meds. I have my multivitamins, omega fish oil, vitamin C.

WHITEHEAD: The app is linked to an automated dispenser...

(SOUNDBITE OF AUTOMATED DISPENSER WHIRRING)

WHITEHEAD: ...Which helps Reid juggle the multiple pills he takes each day to treat his HIV, high blood pressure and Type 2 diabetes. Reid recently celebrated his 66th birthday. He's also celebrating another important milestone - having lived 28 years with HIV.

REID: I'm just happy to be here, you know? It's like, you were diagnosed, and, you know, you weren't supposed to be here. And you're here.

WHITEHEAD: Aging with HIV can bring a host of other health issues, but clinicians, researchers, and advocates say providers often don't have the proper skills to handle them. HIV doctors aren't often trained in geriatrics and vice versa. Poorer care means worse health that can even lead people to neglect their HIV. Melanie Thompson is an HIV clinician in Atlanta.

MELANIE THOMPSON: Even though the population is not dying from AIDS at the rate that was occurring in the 1990s, people with HIV have more comorbidities than people without HIV at a given age.

WHITEHEAD: Conditions like diabetes, heart disease and depression. And that can force people to take on the onerous task of coordinating care between a lot of different doctors.

THOMPSON: They are often dealing with multiple consultants, cardiologists, neurologists, kidney doctors, liver doctors. It becomes quite complex.

WHITEHEAD: Taking more medications to manage multiple conditions increases the risk of dangerous drug interactions. Another major challenge is loneliness. Many people aging with HIV have lost friends and family to the epidemic. Heidi Crane is an HIV clinician at the University of Washington.

HEIDI CRANE: I would provide such better care of my patients if I had the ability to write a prescription for a friend.

WHITEHEAD: Isolation can increase the risk of cognitive decline and can lead individuals to stop HIV treatment. And all that care is a lot for the federal Ryan White Program to manage. It runs clinics for low-income people with HIV across the U.S. Its patient population is growing and aging, but the program's core funding hasn't changed much in the last decade. That can present tough spending decisions, says Laura Cheever, who oversees the Ryan White Program.

LAURA CHEEVER: When you're at a community level, and you're seeing you've got a lot of people that aren't getting enough services to even be in care, how do you decide when that next dollar is spent?

WHITEHEAD: Cheever also says researchers still have a lot to learn about the best ways to meet the needs of those aging with HIV. Her agency recently launched a $13 million project to test out ways to better serve them - like how a better screen for conditions like dementia and frailty.

CHEEVER: For many of the people that are aging with HIV, they were sort of pioneers in HIV treatment. And now they're some of the first people to be aging with HIV. And so we are learning as we go.

WHITEHEAD: But Jules Levin, who runs the National AIDS Treatment Advocacy Project, worries it's too little, too late. The 74-year-old has been living with HIV for nearly 40 years.

JULES LEVIN: Frankly, it's ageism on a vast scale by our federal government, by our researchers and by the advocacy community as well, 'cause they have ignored the problem to a large degree.

WHITEHEAD: Levin worries if that trend continues, it could have dangerous implications for the health of those like himself who have already survived so much.

KURTZLEBEN: Sam Whitehead is a correspondent with our partner KFF Health News. Transcript provided by NPR, Copyright NPR.

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