For World AIDS Day, December 1st: How does one face aging when they never planned to survive? 

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The average age of people living with HIV in most care settings in the United States is 50 years of age or older. For many in this group, a diagnosis of HIV may have occurred decades ago and was accompanied, at the time, with the almost certain fate of disability and eventual death.

This led to people living for the day with no ability to contemplate tomorrow, much less, aging with the virus for decades. Living with the clinical consequences of HIV mono therapy and the subsequent resistance to antiretroviral therapy as well as the significant toxicities associated with these older therapies is a double-edged sword.  On the one hand, their lives were saved, and on the other, quality of life and wellness during the aging process were often sacrificed.

This past week, I had the opportunity at the Association of Nurses and AIDS Care Conference to listen to our elders from across the US who are living and aging with HIV. They wanted us to know that while they’re so happy to be alive they often feel that we as a clinical community have been slow to respond to their voices. Not only do many continue to feel isolated because they’ve lost their formative friend group, but some also reported struggling to make new friends as they continued to live.  Social isolation and loneliness heighten the negative impacts of aging through both biological and psychosocial mechanisms. These conditions enhance frailty (see: HIV and Frailty) and likely contribute to earlier transition to long-term care facilities.

Leaving one’s home and transitioning to long-term care is stressful for anyone.  The fear and anxiety of losing autonomy is coupled with concerns of losing dignity from receiving care, meals, and baths from strangers.  This already challenging situation is made worse when living with HIV.  First, the concern of needing to hide your HIV status and the potential for stigma and discrimination by both healthcare workers and other seniors is very real.  Second, long term care facilities are often ill equipped to manage HIV treatment.  Finally, members of the LGBTQ+ community with HIV suffer the potential need to go back into the closet to avoid further discrimination associated with sexual orientation.

There is hope for change, however.  The community aging with HIV is an active group of seniors who are advocating for change around the world.  Here in Baltimore, “Older Women Embracing Life” was founded in 2005 by women living and aging with HIV out of a premise that emotional support enhances quality of life and reduces psychological stress for people with HIV.  Another group called, “Let’s KickASS,” which stands for AIDS Survivor Syndrome, was founded in 2013 by long-term HIV survivors in San Francisco. Both not-for-profit agencies are pillars of the HIV and aging community.  They support members, patients, care givers, long-term care facilities, and others by increasing awareness of the complex nature of HIV and aging.  Their advocacy is essential to highlighting the community’s voice and we must listen.

Researchers focused on aging also have the opportunity to consider people with HIV in their programs.  For example, a program known as Community Aging in Place or CAPABLE, developed by the Johns Hopkins School of Nursing Professor and now Dean of the School of Nursing, Dr. Sarah Szanton, is transforming aging successfully at home. CAPABLE was designed for low-income seniors to improve safe aging in place.  The approach includes a nurse, an occupational therapist, and a handy worker to address both the home environment and uses the strengths of the older adult to improve safety and independence.  This program is now endorsed by the Center for Medicare.  The original work included only a handful of people with HIV and now collaborations are underway to consider the development of CAPABLE-HIV.  This work will focus on how to adapt CAPABLE for people with HIV and determine the unique needs for safe aging in place for this community.  While in the formative stages, we believe this effort will contribute to national efforts to improve aging in place for people with HIV.  The newly formed Center for Infectious Disease and Nursing Innovation (CIDNI) and the long-standing Center for Innovative Care in Aging are partnering to move this effort forward.  Keep watching this space for opportunities to participate in community advisory board discussions.