CROI 2022: Marc Thompson: Still here after all these years

Marc Thompson, a community leader and co-founder of PrEPster, said that making the Martin Delaney Presentation at CROI 2022 was “special,” not because it was a chance to speak before a distinguished group of HIV physicians, scientists and activists but because it was an opportunity to speak at all.

“It’s special because I never expected to be here, not because of my ability but because of my reality,” Mr. Thompson said. “When I was diagnosed 35 years ago in 1986 at age 17 in the early days of the epidemic, a young Black gay man from a working-class background, the prognosis and life expectancy was a few months and, at most, a few years.

“My reality along with so many others at that time was not to think of my future, not to plan to graduate university, build a career, buy a home, find that special one, fall in love and create a life. My reality was very simple: Plan a funeral and wait for death,” he admitted.

“The idea that I would see the end of the decade and be entering the third decade of the new [millennium] seemed an impossibility.”

He saw no future, but as time went on, he realized that he did have a future, but that future for people who have been living with HIV is not necessarily bright.

“For those of us with HIV, there are many added layers and dimensions to consider [with aging]. We face many disadvantages. We have worse health at a younger age and are poorer, lonelier and more isolated than our HIV-negative peers. And as racially and gender minoritized groups, we face sexism, racism, homophobia and transphobia combined with poor health and HIV stigma.”

In addition, their lives are shaped by when they were diagnosed. People diagnosed before 1997 when effective antiretroviral therapy (ART) became available have a very different life experience than those diagnosed after effective ART, he reminded. “The advances in effective antiretroviral therapy changed HIV from a terminal condition to a chronic manageable one with a near-normal life expectancy.”

And he listed eight concerns of people aging with HIV:

1. The impact of HIV on aging.

“We are the first generation to live through this moment in time, but yet we don’t know what is the impact of aging on HIV and what is the impact of HIV on aging. What does it mean to be living with HIV across a lifetime, to our bodies, to our minds, to our emotional state, to the way that we socialize and engage with the world? If we don’t start to answer these questions, not only does this impact us now but also in future generations who are approaching middle age.”

Mr. Thompson called for longitudinal studies of living long term with HIV, including the effects of long-term ART. “Today, in the United States, 50% of people living with HIV are over 50 years old, and that number is expected to climb to more than 70% by 2030,” he said.

“Start learning from us,” he begged.

2. The continuity of care is a concern.

As HIV becomes a chronic condition, many people are transitioning from an HIV specialist to a general practitioner who “is often not equipped to manage the issues connected with HIV. This is causing us concern. It raises fear and anxiety. We should be working alongside colleagues across other conditions and disciplines to look at how we might integrate different systems of care,” he suggested.

3. Comorbidities.

“As we age, there is an increase of us experiencing comorbidities. Yet we don’t fully understand the impact of HIV on non-HIV conditions, particularly cardiovascular disease and diabetes,” Mr. Thompson said.

4. Polypharmacy.

“Now, obviously comorbidities will lead to more medication,” Mr. Thompson said.

Considerations “include the interaction between HIV medications and medications for non–HIV-related conditions. Many of us who are older are treatment smart. We’ve been taking pills for many years. As we had more pills into the mix, what impact will this have on us?”

5. The increased need for support services. 

“As we age, we all have additional needs, both physical, emotional and social people with HIV have increased concerns about the lack of safe, adequate affordable housing, social spaces and transportation. At the height of the epidemic, we were also good at creating solutions to these issues with the success of AR [antiretroviral] therapies and the focus on living well. Have we dropped the ball? Is it time to rethink the need for the provision of community-based services for older people living with HIV?”

6. Persistent loneliness and isolation. 

“We have enough evidence, both anecdotal and empirical, that tells us that people with HIV already experienced loneliness and isolation in a world where old age renders you invisible. This will only increase,” he warned.

7. Stigma and discrimination. 

“I don’t need to remind anybody who is here today of the pervasive impact of stigma on the life of people living with HIV, and this may only increase for some populations as we become more isolated, moving to care that is not HIV specific, where carers—even though with the best intentions—don’t understand or care about our HIV experience and journey. How many of us will be forced back into the HIV closet?” he said.

“We are all committed to fighting HIV stigma, but HIV stigma is not a one-size-fits-all [battle],” he said. HIV stigma needs to be addressed through the lens of race, gender, sexuality and, in this context, age.

8. Quality of life and aging.

“It is a universal truth that we are all aging, and I have no doubt that everybody tuning in today wants to age well. And we want our last turns around the sun to have quality. This is no different for those of us living with HIV.

“It’s not enough for us just to be grateful that we are still here no matter where we are, when, how we acquired our HIV. If we are long-term diagnosed, diagnosed 50 plus or were born with HIV. And I see a middle-aged approach from the distance. We want to have good quality of life and to age well after decades of surviving. We want to continue to live, but we also want to thrive.”

By Marie Rosenthal, MS