Life is complicated for Alfredo Hernández Chavez.
An educator and activist who has been living with HIV since 1986, Hernández has spent the last 30 years helping others navigate the complex maze of health services, medical providers, and social service agencies that serve people with HIV. He was recently presented with the Bayard Rustin Award for Courage by the AIDS Action Committee for those efforts.
But, for Hernández, aging has not been easy. He battles chronic nerve pain in his hands and feet—a disability that has put him out of work. And though he has made a career out of helping others, he himself struggles to get the care he needs to stay healthy.
“It’s been difficult for me to voice what I need,” he says. “I’m trying very hard to ask for what I need without feeling guilty, without feeling disabled.”
Hernández is just one of the estimated 1.2 million Americans living—and aging—with HIV. And while modern medicine has made remarkable advances in helping these individuals live longer than ever, less attention has been paid to developing systems that can support their comprehensive health needs as they age.
Serving unique needs
“Serving older adults living with HIV in all the health care settings they might be in requires a unique set of skills and understanding,” says EDC’s Erin Smith, who also directs SAMHSA’s national HIV/AIDS & Mental Health Training Resource Center.
Increasingly, these settings include assisted-living facilities and nursing homes—something that was almost unthinkable in the 1980s, when the life expectancy of people with HIV was measured in months not years.
Clinicians—including case managers, doctors, therapists, and mental health professionals—also need to transform their skills in order to provide the kind of care needed. The new HIV and Aging Toolkit, an online resource created by the Center, aims to help clinicians better understand the unique health needs of older adults living with HIV.
“Many clinicians are not prepared to deal with the complexities of aging with HIV,” says Smith. “For many long-term survivors, this includes a history of anxiety, trauma, chronic pain, and financial instability as a result of managing this complicated and chronic illness. Clients and patients are at risk for dropping out of care, stopping medications, and losing viral suppression because their providers don’t address the comprehensive and unique issues of aging with HIV.”
Better comprehensive care
First presented at the U.S. Conference on AIDS in September, the HIV and Aging Toolkit contains information about medication management, side effects, and ailments that can accompany long-term living with HIV, such as neuropathy and HIV-associated neurocognitive disorder. It also addresses the behavioral health challenges faced by people living with HIV, including anxiety, depression, and substance abuse.
Therapist David Fawcett, an advisor on the development of the toolkit as both a clinician and a long-term survivor of HIV, says that years of isolation, loss, and uncertainty about health take a toll on those living with HIV.
“Many of us who lived with HIV in the 80s and 90s found ourselves in a caretaking role,” says Fawcett. “And as that terrain has changed with new medications, we find ourselves in a position of aging—now wondering who is going to be there for us as we were there for people before us? Many people don’t know the answer. And that’s a huge stressor.”
Lived experience is a core theme throughout the HIV and Aging Toolkit, which features videos of Hernández and Fawcett talking about the complexity of growing older with HIV. Smith says that though the toolkit is intended for practitioners—both the Centers for Disease Control and Prevention and the National Library of Medicine are helping to to disseminate the toolkit—it was built with the needs of people living with HIV first.
“This toolkit is all about keeping people living with HIV and AIDS retained in care as they grow older,” she says. “Older adults living with HIV deserve better comprehensive care. We’re trying to build a resource that makes that happen.”