Aging with Chronic Illness: The Medical System's Unprepared Generation

Daniel Reilly, 58, takes 19 pills in the morning and 13 at night to manage hemophilia and HIV—conditions he contracted in the 1980s. No one expected him to live this long. While his longevity is a testament to medical progress, it has also exposed a critical gap in healthcare: specialized providers for aging patients with lifelong disabilities.

“I don’t know if there’s such a thing as [a] geriatric hematologist,” Reilly told me. Such a physician would understand the effects of decades of antiretroviral therapy on the body and blood—or how HIV-related comorbidities interact with aging. Reilly recognizes the rarity of his situation: “The vast majority of us”—HIV-positive people with hemophilia infected in the early 1980s—“have passed,” he said.

Reilly’s experience reflects a broader challenge in medical infrastructure: a generation of people living far longer than expected due to expanding treatments. This cohort includes:

• HIV patients, like Reilly, who are now aging into their 60s and 70s.
• Individuals with severe traumatic brain injuries, such as social worker Brason Lee, 63.
• Those on dialysis, like retired judge advocate general Evelyn Dove Coleman, 72, whose Air Force service also led to Ménière’s disease.

As these individuals age, their lifespans often exceed the expectations of their doctors—and the design of support systems. Most healthcare professionals receive little training in disability, less in aging, and virtually none in the intersection of the two. Meanwhile, federal Medicaid cuts reduce access to home- and community-based services that many aging disabled people rely on. Survival often depends on personal networks: siblings, spouses, neighbors.

Attacks on research funding—spearheaded by figures like RFK Jr. and Russell Vought—threaten the progress that has allowed people like Daniel Reilly to live far longer than anyone expected.

I spoke with Reilly, Lee, and Coleman—all of whom have lived with significant disabilities since before age 50—about their lives and the intricate medical realities involving both their conditions and aging. Despite their challenges, all three worked: Reilly in specialty pharmacy, Lee in social work, and Coleman as an attorney and JAG officer. They are navigating what it means to age into a system not built with them in mind.

In 1986, when Reilly was diagnosed with HIV, the condition was “a death sentence,” he said. He was 20. Stigma was extreme, and no approved treatments existed. He contracted HIV through a blood transfusion for his hemophilia and also contracted hepatitis C, which has since resolved.