Affordability is Now a Defining Challenge for Long-Term Survivors

September 18, 2026

WASHINGTON, DC – Today marks National HIV/AIDS and Aging Awareness Day, the observance The AIDS Institute launched on September 18, 2008, to draw national attention to the growing number of people living long, full lives with HIV and to the health and social needs that come with it. Eighteen years later, that population has only grown and so has the cost of staying healthy.

Over half of people living with HIV in the U.S. are over 50 years old, and that share continues to climb. Antiretroviral therapy turned a fatal diagnosis into a manageable chronic condition. But people aging with HIV now navigate a health care system that was not built for them.

For older adults living with HIV, the cost of staying healthy is no longer just the cost of HIV care. It is the cost of managing heart disease, diabetes, kidney disease, bone loss, and cancer screening alongside HIV often several specialty medications at once, each with its own copayment and each subject to its own coverage rules. Many are in their fifties and early sixties: too young for Medicare, dependent on marketplace or employer coverage, and facing deductibles and out-of-pocket maximums that reset every January and climb every year.

“Living longer with HIV was the goal, and we reached it. Affording to survive, is the work that is left. People aging with HIV are managing four or five conditions at once, and our insurance system charges them more the sicker they get,” said Michael Ruppal, executive director of The AIDS Institute. “We founded this day to make sure that population isn’t overlooked, and eighteen years later that’s still the job.”

The AIDS Institute has documented the barriers between people with chronic illness and the medications their providers prescribe. The pattern is consistent: insurance design quietly shifts costs onto the patients who use the most care, and every barrier compounds for someone managing multiple conditions over decades. When a patient must choose between a prescription and a utility bill, interrupted treatment threatens viral suppression and accelerates other conditions. 

In the coming year, thousands of people aging with HIV who rely on Medicaid to access care will be faced with new work requirements, threatening their access to crucial health care and adding the stress and fear of losing their lifeline and the difficulty of complying with the red tape that will accompany these changes. The AIDS Institute has been advocating for people with HIV to be exempt from these changes to preserve their access to lifesaving treatment. 

Eighteen years on, the question is less whether people with HIV will grow older than whether they will be able to afford to. The AIDS Institute will continue working to ensure that a generation of long-term survivors is not priced out of the care that kept them alive.

The AIDS Institute is a national, nonpartisan, nonprofit organization that promotes action for social change through public policy, research, advocacy and education.
For more information and to become involved, visit AIDSInstitute.org or write to us at [email protected], and follow The AIDS Institute on Twitter @AIDSAdvocacy and Facebook at www.facebook.com/The-AIDS-Institute.