Where do we go from here?

by | Jun 5, 2024 | Blog

At the recent OnAging conference in San Francisco in March, I was privileged to participate in a panel discussion on the needs of HIV long-term survivors. There, I spoke about my friend Steven from Amsterdam who I met at Folsom St. Fair in San Francisco in 1998. We maintained a “very” long-distance relationship over the next nine months or so and while it didn’t work out, we remained friends and kept in touch. Seven years ago, I emailed him on his birthday, but didn’t hear back, which was unusual. A few weeks later I got the news from his friend that he had passed away.

It seems that Steven, who was a long-term survivor like myself, had lost the will to live after losing his partner and the love of his life to cancer a few years earlier. When Steven could no longer ride his beloved horses or teach yoga at a local AIDS organization due to his own health issues, he cut himself off from all of his friends, and decided to stop taking his HIV meds.

I wanted to share Steven’s story because it’s a stark reminder to all of us of the complex and multifaceted needs of long-term survivors of HIV. It underscores the importance of addressing not only the physical aspects of living with HIV but also the mental health and social support systems that are critical for our well-being. His story also emphasizes the urgency of creating comprehensive care and support frameworks that go beyond traditional medical interventions, and highlights the need for a more holistic approach to support the dignity, health, and happiness of long-term survivors and people aging with HIV. 

So, what is it that can we do? First, look at your programs and see if you even have one devoted to HIV and aging, or if not, can you consider creating one, or incorporating HIV and aging as part of an existing program? Uphold the The Denver Principles and the Meaningful Involvement of People with HIV/AIDS (MIPA), by inviting people living with HIV to join your boards, advisory groups, and to help design and inform programs for people aging with HIV and long-term survivors. Nothing about us, without us.

The White House’s Office of National AIDS Policy’s (ONAP’s) National HIV AIDS Strategy, which is a roadmap for how to end the HIV epidemic in the U.S., now includes improving the quality of life for people aging with HIV and long-term survivors as one of its objectives. This is important because it demonstrates the administration’s commitment, and we are excited to work with our new ONAP Director Francisco Ruiz on issues facing people living and aging with HIV and long-term survivors.

We can’t talk about HIV and aging without talking about prevention. Depending on where you live 15-20% of new HIV transmissions occur in people over age 50. And over age 50 is by no means a homogenous group, so we need focused prevention efforts that are appropriate for older adults of all races, ethnicities and genders, designed by and for older adults. We can never get to zero new infections without us.

On a personal level, consider being a buddy— and check up on your friends, family members, or people you know who are living with HIV. If you don’t know someone with HIV, volunteer at an HIV organization, or help raise funds for an AIDS Run or Walk in your area

Yes, living with HIV presents unique challenges, including navigating both internal and external stigmas that can be intensified as we age. However, it’s also an opportunity to foster a more inclusive, understanding, and supportive community where everyone feels visible, valued, and supported. This approach not only improves the lives of those living with HIV but also enriches our community as a whole, making it a more compassionate and connected place for everyone.

Take care of yourself, and each other.

Jeff Berry (he/him/él)
Executive Director

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