By Jeff Mills
Aging can catch us off guard. Six years ago, when I was in my mid-60s and had just moved across the country from Northern California to North Carolina, it hit me: I was officially aging — with HIV.
Over the years I’ve been an activist, a protestor and an advocate for equality. I was a footsoldier in many movements in California, where political and social issues were at the forefront of the daily conversation. But it wasn’t until I moved to Wilmington that I became an advocate for the aging community. I realized that in addition to a quieter conversation about the challenges faced by people aging with HIV, there were fewer resources available in the South than in San Francisco to help address these obstacles.
Aging is hard for a number of reasons: Your health starts to decline. At some point, you begin to lose your friends. And your life can change in dramatic ways from retirement to, in my case, moving across the country.
HIV can make aging even harder. There’s a stigma we face: many people, sometimes including even doctors and caregivers, have never known anyone living with HIV before and may hold on to prejudices and misunderstandings about the disease. A lack of coordinated care, coupled with the impact of comorbidities — other chronic conditions associated with aging that are worsened by our HIV positive status — also complicates our ability to receive comprehensive healthcare.
But in 2019, we hit a milestone. Fifty percent of people with HIV are over the age of 50 — and by 2030, it’s expected to be up to 70 percent. This is a moment to celebrate — it means that people are living longer, healthier lives with HIV — but it’s also an opportunity to come together and recognize the distinct support this new community needs
I’m lucky to be happy and healthy at 71 years old. But there are so many others aging with HIV who are not as lucky — they don’t have access to specialized healthcare, or they’re facing these challenges alone. HIV creates a layer of isolation on top of what accompanies growing older in general and, for many of us, being LGBTQ.
Determining how to best support the growing population of people aging with HIV can be daunting. In my experience, simple things can make the biggest difference. As the director of SAGE Wilmington, a national organization that advocates for LGBT seniors, I started HIV Elders in Regional Outreach (HERO) — a peer-to-peer network of HIV elders in the area — to create a community for people who felt they had none. Five years later, our HERO group still meets regularly and enjoys spending time together — whether it’s enjoying each other’s company and conversation at a dinner party or a trip to the aquarium. Programs like this are vital to the mental health and well-being of our community. No one wants to feel isolated or alone, and seemingly small actions like getting involved in HERO can mean the world to someone aging with HIV.
Supporting the growing community of people aging with HIV is the next phase in the fight against HIV/AIDS. Recently, Gilead Sciences partnered with 30 organizations across the country, including SAGE, to launch an initiative focused on lifting up the best programs providing comprehensive care to our vulnerable community. Through almost $18 million in grants, the Age Positively initiative will support a range of organizations — from healthcare coordinators to advocacy groups — to continue improving the lives of people aging with HIV and get us that much closer to eradicating HIV.
Most people see the negative elements of my HIV status: the loss of loved ones and friends, lack of comprehensive and thorough healthcare, and the stigma we face. However, aging with HIV has given me a platform and ability to help people that I never thought possible. I’ve met others facing the same challenges and obstacles I’ve encountered, and from them have learned the value of advocacy and activism — and the importance of community itself.
For those involved in aging advocacy, I urge you to remember those of us aging with HIV. Joining your local SAGE chapter, volunteering with another Age Positively-supported organization, or even just educating yourself about our community can make a big difference. We’re all in this together and will be stronger united — tackling the multi-faceted challenges of aging with HIV head on.
Jeff Mills is currently an active participant in, and advocate for, the elder LGBTQ+ community of the Cape Fear region of coastal North Carolina. Mills spends time in retirement as a volunteer with HIV+ Elders Regional Outreach (HERO) of the Frank Harr Foundation, with SAGE Wilmington of the Cape Fear Coast, and with the Coastal Region Chapter of AARPNC.
Mills is a four year member of the Volunteer Leadership Council of the Coastal Region Chapter of AARPNC.