National HIV/AIDS and Aging Awareness Day 2020
Written by Jim Clay, Aging Well Program Team Lead
September 18 is National HIV/AIDS and Aging Awareness Day—a day to call attention to the growing number of people living long and full lives with HIV, and to the aging-related challenges of HIV prevention, testing, treatment, and care. It also seems like a great time to share with you CAP’s efforts to support the wellbeing of aging adults living with or affected by HIV, and initiatives being undertaken in our larger community.
Thanks to the advent of HIV treatments that have rendered HIV a chronic but manageable condition, people living with HIV are living longer than ever before. The Oregon Health Authority tells us that sixty-five percent of the 7,500+ living cases of HIV in Oregon might be considered long-term survivors, and that more than half of people living with HIV in Oregon are age 50 or older. This is, of course, a wonderful trend: Thousands of people who likely believed their diagnosis was a death sentence are living to see a stage of their lives beyond their imagination. At the same time, however, they are encountering not only the typical challenges of old age, but also the difficulties of being an HIV/AIDS long-term survivor.
Survivorship is more of a sociological concept than an epidemiological diagnosis, so there are several ways to characterize an HIV/AIDS long-term survivor. Has one survived the virus, and the treatments for it? Surely, that’s part of it. But what about surviving an epidemic by not having acquired the virus, or surviving the loss of one’s entire family of choice and in some cases one’s entire community? What about surviving the traumatic experience of having been a family caregiver, or a front line healthcare worker who eased the pain and last moments of life for countless people who had been stigmatized and rendered invisible? CAP honors all people who identify as survivors, regardless of what definition they choose.
Of those experiencing the physical effects of long-term HIV infection and treatment, many also experience the deleterious behavioral-health effects of having lost much of their support networks to the HIV epidemic. This presents as isolation, loneliness, complex post-traumatic stress disorder, depression, and suicidality among other concerns. These conditions are harmful in their own right, but also they are directly correlated with dangerous lapses in HIV medication adherence.
Established in 2018 to address these very issues, CAP’s Aging Well Program began as the only staffed initiative in Oregon exclusively serving older adults living with and affected by HIV. Over the past two-and-a-half years, with numerous and generous community partners, we have cultivated a community of hundreds of survivors who reflect the HIV experience in Oregon. Through activities ranging from educational seminars and social gatherings to policy advocacy, community service, and one-on-one personal support, the program, located in Northwest Portland, serves participants living throughout several Oregon counties and SW Washington.
The program is staffed by a full-time program lead and a part-time program assistant, both aging adults and long-term survivors themselves.
The COVID-19 pandemic and related physical-distancing requirements have exacerbated Aging Well participants' behavioral-health concerns and created barriers to the critical social support that our program provides. Even prior to the pandemic, a needs assessment we conducted in 2018 clearly demonstrated the necessity of a professionally facilitated behavioral-health and wellness support group. We piloted an eight-week session of one such group from December 2019-February 2020, and our evaluation showed that participants greatly benefited from it. However, the pandemic upended our plans to launch a full version of the group this year.
Although Aging Well has transitioned nearly all of our programming to a virtual format, participation has been challenging for some, because some of our participants lack the technological equipment and/or proficiency needed to engage via videochat. Meanwhile, isolation and loneliness have driven some participants to engage in high-risk behavior such as meeting in person, without physically distancing or using face coverings.
We are currently investigating an expansion of our efforts to include peer support programming focused on behavioral-health and wellness. We are looking at creating a virtual behavioral health and wellness support group, with each week's group meeting focusing on a different topic—e.g., “What motivates you to practice self-care? What gets in the way?” Meetings would be participant-centered, but facilitated by a qualified social worker.
In addition, we have plans to improve access to technological equipment and/or proficiency, through tech support and co-learning sessions.
Everything we do is informed by community, and we hope that our community will recognize the value of this work. Older adults living with HIV are a population that is among the most vulnerable not only to the negative behavioral-health impacts of the COVID-19 pandemic, like isolation, but also COVID-19 itself, since participants range in age from 50 to 82 and commonly have underlying health conditions.
We invite you to follow our work, and to let us know if you or someone you care about might benefit from our community building initiatives. Check us out at www.agingwellnw.org!
If you have any questions about CAP’s Aging Well Program, please contact Aging Well Program Team Lead Jim Clay: agingwell@capnw.org. Or by phone, 503 314-4584.
About Cascade AIDS Project
Founded in 1985 as a grassroots response to the AIDS crisis, Cascade AIDS Project (CAP) is now the oldest and largest HIV-services and LGBTQ+ health provider in Oregon and southwest Washington, with more than 100 employees working across four locations. Our organization seeks to prevents new HIV infections; support low-income people living with HIV; and provide safe, welcoming, and knowledgeable healthcare for the LGBTQ+ community. Through our vital health, housing, and other social services, we help ensure the well-being of more than 15,000 people each year. More information can be found at www.capnw.org
