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We Weren’t Supposed to Get Old: The Unseen Crisis of Aging with HIV





For years, most people saw HIV as a death sentence. No one planned for what would happen if people lived. Now, decades later, thousands of long-term survivors are growing older in a system that never prepared for them. 


Vincent Crisostomo belongs to that generation. A doctor diagnosed him with HIV in 1989 and told him he probably wouldn’t make it to 30. He’s now 64 and works to support others who share that experience. But aging with HIV comes with real challenges: limited housing, undertrained healthcare providers, and services that often ignore or exclude older adults with HIV. 


These problems don’t affect just a few people. They affect an entire generation that lived through the worst of the epidemic and survived. 


Medical treatments have changed. Policies haven’t. And many long-term survivors are left wondering: Who’s paying attention? 



Aging with HIV into a System That Isn't Ready 


Most senior services focus on aging populations that don’t include people who lived through the HIV epidemic. These systems often ignore the realities of long-term survivors. 

Many face serious health problems earlier than expected, issues like heart disease, memory loss, and physical decline. These conditions show up sooner and hit harder. Most aging programs lack the training and resources needed to meet these needs. 


Housing creates another barrier. Older adults with HIV need stable housing to stay healthy, but many can’t find it. During the height of the epidemic, some lost jobs or missed out on building retirement savings. Now they deal with high rents, long waitlists, and housing programs that overlook their medical needs. 


In healthcare settings, stigma still causes harm. Some seniors hide their HIV+ status to avoid judgment. Others receive care from providers who don’t understand the virus or its impact on aging. 


Without proper support, many long-term survivors get left behind. They don’t fit into typical senior services, and most systems don’t offer better options. 



The Weight of Survival 


Many people with HIV didn’t expect to grow old. They lost friends, partners, and entire communities. And now, they carry the emotional weight of survival alongside their physical challenges. Others struggle with isolation, especially after decades spent navigating stigma and secrecy. For many, support systems like chosen family have thinned over time, leaving them to age without the people who once were there for them. 


Grief doesn’t go away. It just changes shape. For those who spent years focused on getting through each day, planning for retirement or even imagining old age feels unfamiliar or out of reach. Without targeted mental health support, long-term survivors often carry this emotional burden alone. The system treats them like any other aging adult, but their history requires very different support. 



What Needs to Change 


Older adults with HIV deserve more than just survival; they deserve support, dignity, and care that reflects their lived experience. That means updating senior services, healthcare systems, and housing policies to meet the needs of long-term survivors. 


Policymakers need to recognize that aging with HIV comes with unique challenges. Services must account for the physical and emotional effects of long-term HIV, the trauma of the early epidemic, and the realities of living in a system that didn’t plan for them. 


We need more HIV-informed healthcare providers, better access to stable housing, and programs that include, not overlook, older adults with HIV. We also need mental health care that understands the burden of survival and grief, and that treats long-term survivors with respect. These changes won’t just improve quality of life, they will honor the lives of people who fought to stay alive. 


HIV is still here. So are the people living with it. And they deserve to age with the care and respect they’ve earned. 

 

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