Relief, Recovery & Resilience
AIDS United examines a disconnect between knowledge and action on HIV, aging & COVID
by Hank Trout
On July 15, 2020, AIDS United presented a ninety-minute webinar and panel discussion entitled “Relief, Recovery and Resilience: HIV, Aging, and COVID-19.” The webinar reviewed the current knowledge about the trials and issues specific to older adults living with HIV and pointed to a serious disconnect between what we know about aging with HIV and what we are doing about it.
Ronald Johnson, the Senior Policy Fellow at AIDS United and himself a long-term HIV/AIDS survivor, outlined the state of what we know now about aging with HIV. For the purpose of this webinar (and a related paper by Mr. Johnson released the same day as the webinar), participants used “anyone living with HIV for twenty years or more” as their definition of “long-term HIV/AIDS survivors.” Long-term survivors comprise more than 55% of the people living with HIV in the U.S.; in some cities, like San Francisco, that percentage is over 60%, and experts predict that people over fifty will comprise 70% or more of the U.S. HIV community by 2030. Most of the information he presented came from interviews with survivors in Birmingham, Alabama; Portland, Oregon; Chicago, Illinois, Houston, Texas; New York , New York; San Francisco, California; and six other U.S. cities in 2019.
Those interviewees reported many of the same concerns and issues, including: difficulty in accessing and maintaining health care; difficulty managing their HIV health care along with various comorbidity and polypharmacy issues; healthcare professional’s lack of HIV/aging-specific knowledge; lack of mental health and substance use treatment programs for older adults; lack of programs that lessen isolation and loneliness; inadequate housing and transportation opportunities; addressing stigma and discrimination that is heightened by ageism; and concerns about long-term nursing care.
These listening sessions offered strong verification of concerns and issues that have been expressed previously by older adults living with HIV (whom advocate Tez Anderson has dubbed the “forgotten majority”) and HIV and aging advocates. This knowledge is especially important since we are seeing the very first generation of women and men to age with HIV. While many of their concerns are typical for all people who are aging, those problems are exacerbated by the ravages of the virus itself, stigma, and the intersectional issues of racism, sexism, gender identity discrimination, homophobia, and transphobia.
Johnson pointed out that although we currently know and are discovering a great deal about the needs of older adults living with HIV, and although government officials and policy makers have begun to focus on those needs, still many older adults living with HIV feel that their needs and concerns are given less attention or ignored. They feel that the emphasis on preventing new infections will leave them and their needs forgotten out in the cold. To combat this disconnect between knowledge and action, Johnson pointed to the need for sustained, focused, and collaborative advocacy.
As goals for AIDS United, Johnson urged (1) inclusion of policies, programs, and research that address HIV and aging and the needs and concerns of older adults living with HIV in the broader response to HIV and efforts to end the HIV pandemic; and (2) recognizing HIV prevention, care, treatment, and research as a routine component of physical and mental health care for older adults and a routine component of social support services for older adults. He outlined as priorities improving medical care and access to same; mental health and substance programs; housing, transportation, and other support services; fighting stigma and discrimination; ending the HIV pandemic; and understanding the intersection of HIV policy and older adult policy and advocacy.
Unfortunately, the COVID-19 pandemic has upended the social order to a rarely seen degree. Fortunately, although COVID-19 has attacked 1 in every 100 Americans, studies have generally shown that PLHIV are no more likely to contract the coronavirus than their HIV-negative counterparts, and they generally do not develop more severe illness or have a higher risk of death. Still, the pandemic has exacerbated the social determinants of health; it has disproportionately impacted the same segments of society most adversely impacted by HIV. The pandemic has highlighted disparities and inequities in health care, has interrupted the care and treatment of chronic diseases, including HIV, and has driven the UN 90-90-90 targets farther off track. However, Johnson felt confident that our response to COVID-19 can learn from and be enhanced by HIV responses, advocacy, and activism over the years.
Johnson pointed to AIDS United’s goal for moving forward with sustained advocacy — “All people living with HIV in the United States will receive the care and support needed to age successfully, having achieved and maintained good physical, mental, and sexual health and overall well-being.”
Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his husband Rick. Follow him on Twitter @HankTroutWriter.