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Long Term HIV Survivors Face Unique Health Needs

Scott Bertani

Director of Advocacy, National Coalition for LGBTQ Health

On June 1 we marked the 40th anniversary of the first reports of HIV and on June 5 we recognized Long-Term HIV Survivors Day. These dates remind us of people living with HIV (PWH) — both those people who survived and grew older amid and alongside the HIV epidemic, and those who never got the chance to do so. They also underscore how far we’ve come in HIV treatment, care coordination, and prevention services and the opportunities that these advancements have provided for people living with and aging with HIV.

Living with HIV can be extremely challenging at any age. But for older PWH, having to contend with the effects of aging and chronic inflammation issues at the same time can have a force multiplier effect on a person’s health outcome.  

Approximately 1.2 million Americans are living with HIV per 2018 CDC data, and nearly six in 10 people living with HIV are over the age of 50. That makes the state of successful aging with HIV among older people a fast-growing concern, especially for people over 55 having lived with HIV for more than 15 years.


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Older PWH face an intersection of challenges and risk factors with even far greater medical, mental health, and psycho-social and supportive service needs not seen in younger HIV positive cohorts. In fact, more than 50 percent of people living with HIV long-term reported being diagnosed with depression and a quarter were diagnosed with post-traumatic stress disorder, according to HealthHIV’s Inaugural State of Aging With HIV National Survey.

To that end are the many “inflammaging” issues that older PWH experience, despite being virally suppressed and unable to transmit. Those conditions often include cardiovascular problems, more unhealthy levels of lipids (or fat) in the blood, high blood pressure, neuropathy, and the early onset of type II diabetes, as well as chronic kidney disease or bone-density loss. 

In fact, there is three times the likelihood of having these long-term health conditions compared with the general population. And for those who were diagnosed before the introduction of combination antiretroviral therapy in 1996, this cohort was often had three or more co-occurring conditions.

To be clear, just because the rates of age-related diseases are higher in PWH at younger ages, it doesn’t necessarily mean that everyone who is HIV positive will have multiple conditions by the time they reach their 50s.


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In fact, it isn’t entirely clear that of those aging with HIV, who exactly will be at-risk and of which comorbidities. But this is a reasonable justification for more routine screenings and integrative geriatric care together with HIV primary care, not to mention supportive service mechanisms. 

People over the age of 50 have a clear need for HIV and STI prevention services, as well. While HIV risk factors are similar for everyone, older adults may be less likely to get tested by their providers. In fact, new HIV diagnoses of people over the age of 50 continue to increase, with the proportion of new diagnoses almost doubling over the last decade. It went from just under 10 percent in 2007 to nearly 23 percent this past year.

We’re 40 years into the HIV epidemic and with a fast-growing population of older PWH, often with other medical conditions or supportive service needs, it means that the system of HIV care and prevention as we know it will increasingly need to draw on a wider range of provider disciplines, and soon. That includes building better access points to care coordination services and routine medical screenings for people as they age with HIV. 

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