Since its dedication in 2014, June 5 has come to be known as HIV Long-Term Survivors Awareness Day. This day, selected due to its historical importance as the date of the first CDC report on HIV/AIDS in 1981, is an opportunity to honor long-term survivors of HIV, a group whose definition often varies, but can include those diagnosed with HIV prior to implementation of Highly Active Antiretroviral Therapy in 1996, those who have been living with HIV for over 10 years, and those born with or who acquired HIV as babies.
We spoke with HIV advocate and long-term survivor Ronald Johnson, current Chair of the U.S. People Living with HIV Caucus, for a conversation about his work leading the HIV and Aging Policy Action Coalition (HAPAC) as he continues to advocate for older adults living with HIV.
Read our conversation below:
Thank you for spending time talking with me for HIV Long-Term Survivors Day. I wanted to start by asking you about your work with HAPAC. What is the focus of this coalition of how does it address HIV & Aging?
The focus of the HIV and aging policy action coalition is to advocate for public policies, particularly at the federal and state level, that are responsive to the needs, the care, and the well-being of older adults living with HIV and long-term survivors. Part of that is looking at the aging process and its interaction with HIV – with the current reality of treatments, people are living longer with HIV. Older adults living with HIV and long-term survivors such as myself have been aging with HIV for, in some cases, 20 or more years.
Older adults living with HIV and aging with HIV face unique challenges that younger people living with HIV aren’t facing, can you talk about what these challenges are and how to address them?
There are major challenges. One of the first and most often cited by older adults living with HIV is dealing with comorbidities.
Certainly, health is the center most concern in the lives of all people living with HIV, but with those of us who are over 50 living with HIV, you really begin to see the interaction between HIV and the aging process. We know with aging there is an increase in comorbidities, such as cardiovascular disease, diabetes, frailty. But we are also seeing that people who are HIV positive and are aging, and over 50 have a higher prevalence for some of the comorbidities. Along with the comorbidity issues comes poly-pharmacy issues. Again, as an example, I take about 10 prescription drugs a day. Only one is for HIV. Managing the drugs and the poly-pharmacy issues is a major challenge for older adults living with HIV.
One other challenge that I would cite from listening sessions and interactions with older adults living with HIV is dealing with loneliness and social isolation as well as the stigma and discrimination that reinforce those feelings and behaviors. Whether it be ageism, racism, homophobia, transphobia, all these factors add to the vulnerability of stigma and discrimination for older adults living with HIV. We really do need public policies that take into account and recognize these challenges to develop the programs that would address these challenges. They’re not unique to older adults living with HIV, but they are heightened. There are also opportunities for alliances with other groups of older adults because we face similar problems.
Can you give us a breakdown of the Older Americans Act and how its reauthorization plays a role in ensuring equitable care is available for older people with HIV? Why should this legislation be of importance to older adults living with HIV and to long-term survivors?
The Older Americans Act (OAA) (H.R. 4120/S. 1979) is one of the oldest and most important parts of the safety net of social services. The population of people living with HIV who are 60 years and older is growing, so we need to look to the opportunities provided under the OAA for this population.
The Biden-Harris Administration has included as part of the updated OAA regulations, states should recognize older adults living with HIV as a population of greatest social need. This mandates that state plans should address how the state is meeting and serving the needs of this population. This is a huge accomplishment, and I am very grateful the administration has recognized this and included it in the regulations.
However, as the OAA expires this coming September, we need to get this new regulation into law. It is a key priority for HAPAC to ensure the OAA is reauthorized, and older adults living with HIV are included in the definition of a population of greatest social need into the law.
People 50 and up make up over 53% of the people in the U.S. living with HIV, yet conversations about HIV and aging are few in far between. With this percentage expected to increase to 70% in 2030, what concerns are we currently facing with this growing population and can advocates do to ensure equitable care is available?
In some jurisdictions, for example San Francisco, it has already reached that mark of 70%. It’s a population that is growing in numbers and percentages. We advocates need first to keep in mind HIV and aging is a reality of the epidemic. Progress has been made in the last 3 to 4 years to heighten awareness. It needs to be part of all our conversations around HIV going forwards.
Additionally, advocates need to recognize that the population of long-term survivors is becoming very nuanced. In the last 2 or 3 years, we’ve seen the emergence of lifetime survivors – people who were born with HIV and who are now in their late twenties and thirties. They have a unique set of needs that also need to be recognized alongside long-term survivors. And it’s becoming more nuanced on the other end as we have a growing number of people aging into their fifties, sixties and people like me in their seventies. Issues are becoming more complex as the population becomes more complex.
What does HIV Long-Term Survivors Awareness Day mean to you, as a long-term survivor yourself?
It’s a recognition of my survival and recognition that in many ways it’s a privileged survival. I’ve been involved in advocacy work since the early 80s, and I’ve seen far too many people not survive in the early pre-treatment days. While appreciating my survival, I am very mindful of people, including a past domestic partner, who did not survive.
That also gives me the determination to make sure those currently living with HIV and those who have acquired HIV recently have the resources needed and the ability to survive. So, on this awareness day, as I contemplate my own survival and remember those who did not, I increase my determination that in the future, HIV care will be mainstream and part of the healthcare services available so that we won’t have to do the kind of advocacy we have to do today.
The work of the HAPAC coalition and other coalitions continues to be so vital. We still have work to do, and I’m hopeful that June 5th can be an opportunity to reinvigorate ourselves and recommit ourselves to the work that needs to be done.
