Malcolm Reed spends time with his dog Sampson at his home in Decatur, Georgia. Reed, who recently celebrated his 66th birthday and the anniversary of his HIV diagnosis, is part of a growing group of people over 50 who are infected with the virus.
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Sam Whitehead/KFF Health News
DECATUR, Georgia — Malcolm Reed recently took to Facebook to mark the one-year anniversary of his HIV diagnosis. “Diagnosed with HIV 28 years ago and today, thriving,” he wrote in an April post, which garnered dozens of responses.
Reed, an advocate for people with HIV, said he’s blessed to have lived to 66. But as he’s gotten older, he’s also come with a host of health challenges. He’s beaten kidney cancer and now takes medication for HIV, high blood pressure and type 2 diabetes. “There’s a lot to manage,” he said.
But Reed isn’t complaining. When he was diagnosed, HIV could have meant death. “I’m just happy to be here,” he says. “I wasn’t supposed to be here, but here I am.”
More than half of people living with HIV in the United States are over 50, like Reid. Researchers estimate that by 2030, 70% of people living with HIV will be in this age group. Growing risks Other health problems such as diabetes, depression, and heart disease; Greater Opportunities You may develop these conditions at a young age.
Over 500,000 people
But the U.S. health care system is not prepared to meet the needs of more than 500,000 people over the age of 50 — both those already infected with HIV and those who have recently become infected — according to HIV advocacy groups, doctors, government officials, people with HIV and researchers.
They worry that a lack of funding, an increasingly dysfunctional Congress, flaws in the social security net, untrained health care providers and workforce shortages could worsen the health of aging people with HIV and undermine the larger fight against the virus.
“I think we’re at a tipping point,” said Dr. Melanie Thompson, an Atlanta-based internist who specializes in HIV treatment and prevention. “It would be very easy to lose all the great progress we’ve made.”
The development of antiretroviral therapy, drugs that reduce the amount of virus in the body, is allowing people to survive the virus longer.
But aging with HIV increases risk of health problems Inflammation-related Viruses and Long-term use of strong drugsOlder adults require coordinated care across multiple specialists and are more likely to take multiple prescription medications, increasing their risk of adverse drug reactions.
“Double stigma”
Some face what researchers call “double stigma” — ageism and anti-HIV prejudice — and also higher rates of anxiety, depression and substance use disorders.
Many people have lost friends and family to the HIV/AIDS epidemic. Risk of cognitive decline and other conditions “This is not an easy problem to solve,” said Dr. Heidi Klein, an HIV researcher and clinician at the University of Washington.
“If I had the ability to write a prescription for a friend who was supportive, engaged, and willing to go for walks with me twice a week, the care I provide would be so much better,” she says.
The complexity of care is a major burden for the Ryan White HIV/AIDS Program, a federal initiative for low-income people with HIV. Half of Americans Living with the virus Nearly half Most of the customers are over 50 years old.
“Many of the people aging with HIV were in the vanguard of HIV treatment,” says Laura Cheever, who oversees the Ryan White Program for the Health Resources and Services Administration (HRSA). Researchers have a lot to learn about how to best meet the needs of these populations, she says.
“We’re all learning as we go, but it’s definitely difficult,” she says.
The core budget for the Ryan White program has remained roughly flat since 2013, even as the number of patients has increased by 50,000, Cheever said. Latest Budget Request It seeks an increase of less than 0.5% of program funding.
Cheever said local and state public health officials are making most of the decisions about how to spend Ryan White’s money, and limited resources can make balancing priorities difficult.
“How do you decide where to spend the next dollar when so many people are lacking care?” Cheever said.
The latest capital infusion into Ryan White brings its total since 2019 to $466 million. Federal efforts to end the HIV epidemic But the plan has drawn criticism from Republicans in Congress. Last year, they tried to cut off funding. Even though it was initiated by the Trump Administration.
That’s a sign of waning bipartisan support for HIV services, putting people “at extreme risk,” said Thompson, the Atlanta physician.
She worries that the increasing politicization of HIV will prevent Congress from appropriating funding. Student Loan Repayment Pilot Program A program for medical workers aimed at attracting infectious disease specialists to areas with a shortage of medical workers.
Many aging people with HIV are insured through Medicare, the public health insurance program for people aged 65 and older. Research suggests Ryan White patients with private insurance had better health outcomes than those with Medicare, and the researchers linked this to better access to non-HIV preventive care.
About 40 percent of people with HIV rely on Medicaid, the state and federal health insurance program for low-income people. 10 states will not expand Medicaid May leave HIV infection in older adults There are few places to get care outside of Ryan White. Thompson says that’s what clinics should do.
“The risks are great,” she said. “If we don’t pay more attention to our care system, we are in a very dangerous situation.”
Reed, the Atlanta HIV advocate, said one in six new diagnoses is in people over 50, but public health policies have not kept pace with that reality. For example, the Centers for Disease Control and Prevention: HIV testing recommended Only available to people between the ages of 13 and 64.
“We have an outdated system. For some reason, we believe that once you reach a certain number, you stop having sex,” Reid says. Because of this blind spot, older people are often only diagnosed after the virus has destroyed the body’s infection-fighting cells.
Funding for improvements
Recognizing these challenges, HRSA recently launched a $13 million, three-year program to look at ways to improve the health outcomes of older adults with HIV.
Ten Ryan White Clinics across the U.S. are participating in this initiative. Test ways to better track risk It reduces the risk of harmful drug interactions for people taking multiple prescription medications. The program is also testing ways to better screen for conditions such as dementia and frailty, as well as streamline the referral process for people who may need specialist care.
Jules Levin, 74, executive director of the National AIDS Treatment Assistance Project, who has been living with HIV since the 1980s, said he hopes the new strategy will come soon.
His group isGlasgow DeclarationAt the conference, the International Coalition of Older People Living with HIV called on policymakers to improve access to affordable health care, allow patients to spend more time with their doctors and combat age discrimination.
“It’s a tragedy and a shame that older people with HIV have to suffer like this because they’re not getting the proper care they deserve,” Levin said. “Without solutions, it will quickly become a catastrophe.”
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