By: Tez Anderson, Founder & Executive Director, Let’s Kick ASS—AIDS Survivor Syndrome
Older Adults with HIV make up 60 percent of all people living with the virus in the United States. But the majority cohort continues to overlooked and ignored by HIV/AIDS care, services and community-based organizations, international and national AIDS conferences, and governmental bodies.
The median age of the people living with HIV in America is 58. Approximately 660,000 of the estimated 1.1 million women, men and transgender people living with the virus over age 50. A proportion that in 2020 will increase to 70 percent.
As HIV activists, we hear a lot about “key populations,” disparities” and “bridging the gaps.” The conversation usually revolves around gender, gender expression, race and poverty and the roles they play in people with HIV lives.
But the topic of
Aging and HIV isn’t brought up. Why is it that the largest key population—Older Adults with HIV—is never included in these gaps? Why do older people with HIV receive the least attention, funding, and focus?
It would be easy to point the finger at discrimination based on age, or ageism. While that is undoubtedly part of the problem, there is more to it.
For one, HIV has all but disappeared from the mainstream headlines in the U.S. It was once a fatal disease and is now a “chronic manageable disease,” ignoring the fact that without daily medications it is still deadly. Most long-term survivors scoff at the idea that it is easily managed. HIV/AIDS is no longer on most people’s mind.
For another, the HIV care community and conferences have overoptimistically focused a cure (which remains elusive) and being “AIDS-Free” by some arbitrary date. It was once in 2020, and now it is 2030.
The people and agencies providing our care are more focused on the future while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years are the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old.
Examples of the indifference include the U.S. Centers for Disease Control & Prevention ("CDC") is aging data from 2013, old statics which vastly under-represents the present-day reality. September 18 is National HIV/AIDS and Aging Awareness Day. But the folks that originated the day have all but abandoned it. The website has not been updated years. If there’s a theme for 2018, I can’t find it.
This ongoing in indifference has an impact on the health and well-being of older adults. Lost in the apathy are the complexities and nuances of HIV and aging. What about our lives right now?
For instance, the differences in quality of life for long-term survivors and those older adults who have acquired HIV more recently. These facets matter.
Polypharmacy is a big word for the number of medications we take for “non–HIV comorbidities.” We appear to be aging at an accentuated rate too. Older adults with HIV are more likely to exhibit characteristics of people in their 60s, 70s or even 80s. In other words, 60 is the new 70 for those living with HIV for decades.
I often wonder if part of the problem is the aim established by the CDC and UNAIDS which states the “ultimate goal is achieving viral suppression.” They don’t have a vision for what happens next. What is beyond viral suppression for a population aging with HIV?
What about those living with HIV who are who’ve been undetectable for years. Then what? It seems to be the end of a conversation not the start of another dialogue about. How about we focus on what it will take to change the narrative to what it will take for healthy aging with HIV? How does that look? Isn’t that a worthier goal?
Aging is not on the agenda. It is time to change this. It will take us demanding it and not put up with invisibility. We are the ones that changed the face of healthcare advocacy for all diseases. Are we up for doing the something to envision an agenda for aging with HIV?
Some communities around the country are taking matters into their own hands and holding dedicated HIV and Aging Conferences. I’ve spoken at some of these conferences, and they are incredible. But are we not worthy of an “aging track” or the spotlight on the main stage at expensive AIDS conferences?
The thing I hear most from older adults and long-term survivors is they feel forgotten and invisible. If this is how we treat our aging population what’s the message we are sending to young people living with HIV?
It seems the focus is on “ushering in an AIDS-Free generation” and a concerted effort to End AIDS by, first it was 2020, now it is 2030. What does “ending AIDS” mean to those of us living with AIDS for decades? Most of us finishing it “after I’m dead.”
I know we can walk and chew gum at the same time. We can envision an AIDS-free generation and ensure that our health care system and services are empowering the first generation to live meaningful and healthier lives.
Learn more about Let’s Kick ASS—AIDS Survivor Syndrome online at
https://letskickass.hiv.
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.
