In the Spotlight:
Long-Term Survivors

A Conversation with Jeff Berry of The Reunion Project

Once thought of as an impossibility, HIV long-term survivors are thought to make up around 25% of those living with HIV in the United States. This includes those who were diagnosed before the introduction of highly active antiretroviral therapy (HAART) in 1996, as well as people who acquired the virus as babies, many of whom are now in their 30s and 40s.

In recognition of HIV Long-Term Survivors Day on June 5, amfAR spoke with Jeff Berry who was diagnosed with HIV in 1989. Berry is the Chief Editorial Officer of TPAN, Editor of Positively Aware, and a co-founder of The Reunion Project, an organization that connects long-term survivors of HIV.

What does the term long-term survivor mean, to you?

HIV long-term survival can mean different things to different people, but the most important thing is that if you self-identify as a long-term survivor (LTS), then you are one. Many people who identify as long-term survivors have been living with HIV for 10 years or more, while others have been shaped by the experience of living with HIV since the time when there was no effective treatment (before 1996). People who acquired HIV around birth (verticals) or at an early age and have been living with HIV 10, 20, 30 years now are also long-term survivors.

Tell us a bit about the work of the Reunion Project.

The Reunion Project is the national alliance of long-term survivors of HIV, and hosts one- and two-day summits (town halls) around the country. The summits consist of a mix of facilitated discussions, panels, and presentations led by key researchers, advocates, and long-term survivors of HIV and AIDS. It was founded in 2015 by long-term survivors of HIV who recognized that there is an entire group of individuals who had survived the epidemic, but in many ways have been left behind by the community that they helped to build.

Could you tell us about some of the needs and concerns of long-term survivors, in your experience?

Mental health issues are a huge concern, such as depression, anxiety, PTSD, isolation and loneliness, all of which have been exacerbated by COVID. Things like frailty, bone, neurocognitive and cardiovascular disease, cancers, kidney and liver disease, are all happening to us earlier than our HIV-negative counterparts. Many long-term survivors have experienced multiple traumas—trauma from our childhood, the trauma of racism, sexism, homophobia, transphobia, and the trauma of losing entire support networks of lovers, friends, and family members to AIDS early on in the epidemic. We’ve heard stories of older LGBTQ+ people and PLWH having to go back into the closet when entering into long-term care facilities, for fear of being outed, ostracized, stigmatized and receiving suboptimal care.

Forty years in, where do you think we stand with HIV/AIDS?

We’ve made a lot of progress with HIV/AIDS over the years, but there is still a lot of work to do. We have effective treatment and prevention methods and U=U, but we also know that access is still an issue, stigma is still an issue, and we’ll never get to zero without addressing the social determinants of health that create and perpetuate the inequities that BIPOC, trans people and other vulnerable communities face every single day.

What do you think is one thing or things that people don’t know about HIV that they should?

Many people don’t think that HIV is still an issue. I don’t believe most people realize how racism, anti-Blackness, white supremacy and things like HIV, AIDS, and COVID are all interconnected. We can’t address one without fixing the other, or we’ll just keep moving on to the next pandemic, and the one after that. Until we address some of these deep-rooted issues in our society that cause the most marginalized to be more vulnerable, we are just putting a band-aid on a deep wound.

What does a cure mean for you?

A cure for me would give me hope for the world, and demonstrate that when we work together, we can accomplish great things. There are amazing advances happening in the area of HIV cure research every day, and we have reason to be hopeful that it might actually happen in our lifetime. We’ve seen the proof of concept with the few people we know who have been cured with stem cell transplants, but we need a cure that is relatively easy and completely safe to use, and one that is scalable. But once again, unless we get around to addressing some of the underlying root causes that lead to poverty, housing and food insecurity, substance abuse/misuse, lack of access to healthcare, and the list goes on and on—until then, what exactly are we curing ourselves for? As a wise human once said, we need to be the change that we wish to see in the world.