by Stewart Landers, Director, U.S. Health Services, JSI Boston
While combination anti-retroviral therapy (ART) has transformed HIV from a killer into a chronic disease, it has created a large and growing group of people aging with HIV. People aged 50 and older accounted for almost one quarter (24 percent, 288,700) of the estimated 1.2 million people living with HIV infection in the U.S. in 2012. In addition, the CDC reported that in 2013, people aged 50 and older accounted for 21 percent (8,575) of the estimated 47,352 AIDS diagnoses in the United States.
For many people aging with HIV, this raises a whole new set of questions: Who will care for me as I get older? Will I become socially isolated? What kind of planning is needed to ensure that my finances can support me into my 60s, 70s, 80s and beyond?
In talking to one friend of mine, now 68 and living with HIV since 1978, he said, “In the 1980s I was sure I would be dead in a year or two. I loaded up all my credit cards and took four of my friends to scuba dive in the Caribbean. I had no idea I’d still be here 25 years later. It was an adjustment to start working again, saving money, and planning for retirement.”
Social isolation is a problem for many people living with HIV and AIDS. Studies have shown a majority of them live alone and many have been abandoned by families due to their diagnosis or substance use or sexuality. Places like the Boston Living Center provide a drop-in center where people living with HIV can get meals, counseling, and access a computer center and even art classes!
Because of the stigma associated with HIV in the older population, older people are diagnosed with HIV longer after initial infection, and progress more quickly to AIDS than younger people. For example, 24 percent of people aged 25-29 progressed to AIDS in 12 months, compared to 44 percent of people aged 50-59, 49 percent of people aged 60-64, and 53 percent of people aged 65 and older. There are few HIV prevention programs targeting older Americans who may not be as knowledgeable about HIV infection and how to prevent it. While older people visit the doctor more frequently, they are less likely to discuss their sexual or drug use habits compared with younger patients, and their doctors are less likely to ask older patients about these issues.
Older people living with HIV/AIDS have many additional issues to worry about, beyond the direct impact of HIV infection. The use of many HIV medications, especially over time, may have side effects including increased risk for cardiovascular disease and diabetes. Long-term survival with HIV disease may create a risk of inflammation that may be associated with increased cancer risk. In general, cancer risk increases with age and there is evidence that HIV survivors may be at greater risk for anal and cervical cancer, skin cancers, and Hodgkin’s lymphoma.
Many long-term HIV/AIDS survivors, especially those diagnosed prior to 1996, have a legacy of post-traumatic stress based upon the fear, hardship and loss they experienced facing their own mortality and that of their friends and loved ones. A recent book by NYU Professor Perry Halkitis, “The AIDS Generation: Stories of Survival and Resilience,” describes many of those who faced the epidemic and lived to tell the story. There is much to be learned from the resilience of those who have managed to not only live but also find the strength and compassion to continue to help others.
Action Steps & Related Resources
- World AIDS Day is December 1. Download posters and resources, or find a nearby HIV testing site.
- Visit the LGBT Aging Project online
- Learn more about the Positive Self-Management Program (PSMP) for people living with HIV.
- Check out the New England Association on HIV Over 50
- Learn about HIV in people 50 and older