Malcolm Reid at home in Decatur, Georgia, with his dog, Sampson. Reid, who recently celebrated his 66th birthday and the anniversary of his HIV diagnosis, is part of a growing group of people 50 and older living with the virus.
Sam Whitehead/KFF Health News
hide caption
toggle caption
Sam Whitehead/KFF Health News
DECATUR, Ga. — Malcolm Reid recently marked the anniversary of his HIV diagnosis on Facebook. “I was 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 living with HIV, said he was happy to have reached the age of 66. But getting older comes with many health problems. He is a kidney cancer survivor and currently juggles medications to treat HIV, high blood pressure and type 2 diabetes. “It’s a lot to deal with,” he says.
But Reid isn’t complaining. When diagnosed, HIV was sometimes a death sentence. “I’m just happy to be here,” Reid said. “You weren’t supposed to be here, and here you are.”
More than half of 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 be in this age group by 2030. Aging with HIV means an increased risk of other health problems, such as diabetes, depression and heart disease , as well as a greater risk of developing these diseases. at a younger age.
More than half a million people
Yet the U.S. health care system is not prepared to meet the needs of more than half a million people — those already infected and those newly infected with HIV — over the age of 50, HIV advocates say , doctors, government officials, people living with HIV and researchers.
They worry that financial constraints, an increasingly dysfunctional Congress, gaps in the social safety net, untrained providers and a labor shortage are making HIV-positive older adults vulnerable to poorer health, which which could harm the broader 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 most of the progress we have made. »
People are living longer with the virus, in part due to the development of antiretroviral therapies, drugs that reduce the amount of virus in the body.
But growing old with HIV comes with a higher risk of health problems related to inflammation caused by the virus and long-term use of harsh medications. Older adults often must coordinate care between specialists and often follow multiple prescriptions, increasing their risk of adverse drug reactions.
“Double stigmatization”
Some people face what researchers call the “double 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 members to the HIV/AIDS epidemic. Loneliness can increase the risks of cognitive decline and other medical problems in older adults and can lead patients to stop treatment. It’s not an easy problem to solve, says Dr. Heidi Crane, an HIV researcher and clinician at the University of Washington.
“If I had the opportunity to write a prescription for a friend – someone who is supportive, committed and willing to come with you twice a week – the care I provide would be much better,” she says .
The complexity of care poses a heavy burden for the Ryan White HIV/AIDS Program, the federal initiative serving low-income, HIV-positive people. The program serves more than half of Americans living with the virus and nearly half of its clients are 50 or older.
“Many people aging with HIV have been pioneers in HIV treatment,” says Laura Cheever, who oversees the Ryan White program for the Health Resources and Services Administration, or HRSA. Researchers have much to learn about the best ways to meet population needs, she said.
“We’re learning as we go, we all are. But it’s definitely a challenge,” she says.
The base budget for the Ryan White program has remained virtually flat since 2013 despite the addition of 50,000 patients, Cheever says. The Biden administration’s latest budget request calls for an increase in funding for the program of less than half a percent.
Public health officials at the local and state level make the bulk of the decisions on how to spend Ryan White’s money, Cheever says, and limited resources can make balancing priorities difficult.
“When many people are not receiving care, how do we decide where the next dollar will be spent? » Cheever said.
The latest cash infusion for Ryan White, amounting to $466 million since 2019, is part of a federal initiative to end the HIV epidemic by 2030. But this program has been criticized by congressional Republicans, who last year tried to defund it. even though it was started by the Trump administration.
It’s a sign of an erosion of bipartisan support for HIV services that puts people “in extreme danger,” says Thompson, the Atlanta doctor.
She worries that the growing politicization of HIV will prevent Congress from allocating money for a student loan repayment pilot program for health professionals, aimed at attracting infectious disease doctors to areas where it there is a shortage of providers.
Many people aging with HIV are covered by Medicare, the government insurance program for people 65 and older. Research has shown that Ryan White patients with private insurance were healthier than those with Medicare, which researchers linked to better access to non-HIV preventive care.
About 40 percent 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 may leave HIV-positive seniors with few places to seek care outside of Ryan White clinics, Thompson says.
“The stakes are high,” she said. “We find ourselves in a very dangerous situation if we don’t pay more attention to our health care systems.”
About 1 in 6 new diagnoses are in people 50 or older, but public health policies haven’t caught up with that reality, says Reid, the Atlanta HIV advocate. The Centers for Disease Control and Prevention, for example, recommends HIV testing only for people ages 13 to 64.
“Our systems are outdated. For some reason, they believe that once you hit a certain number, you stop having sex,” says Reid. Such blind spots mean older people are often only diagnosed after the virus has destroyed the cells that help the body fight infection.
Funds to improve
Recognizing these challenges, HRSA recently launched a three-year, $13 million program to research ways to improve health outcomes for older adults living with HIV.
Ten Ryan White clinics across the United States are participating 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 such as dementia and frailty, as well as ways to streamline the referral process for people who may need specialist care.
New strategies can’t come fast enough, says Jules Levin, executive director of the National AIDS Treatment Advocacy Project, who at 74 has lived with HIV since the 1980s.
His group was one of the signatories of the “Glasgow Manifesto”, in which an international coalition of older people living with HIV called on policymakers to ensure greater access to affordable care, allowing patients to spend more time with doctors and to fight against ageism.
“It is tragic and shameful that older people with HIV are forced to go through what they are going through without receiving the attention they deserve,” says Levin. “It will soon be a disaster with no solution. »
KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of the major operating programs ofKFF — the independent source for health policy research, polling and journalism.