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First Cohort With HIV: Paving the Path for the Future

Marc Thompson

Director, The Love Tank
Co-founder, Prepster
London, England

Marc Thompson has no relevant conflicts of interest to disclose.

View ClinicalThoughts from this Author

Released: July 11, 2022

Receiving My Diagnosis
I am a 53-year-old Black gay man, and I have been living with HIV since I was diagnosed at age 17 in 1986. I currently live in London, UK, where I am an activist, a health promoter, and somebody who believes in trying to get the best for people who are living with HIV—especially marginalized communities that are affected by the virus.

I was diagnosed during the early days of the epidemic when little was known about HIV. Because we had few healthcare options and no available treatment, we focused on our well-being. I would see my doctor every 3 months for a regular checkup, and I would go to local community services to see a therapist or seek complementary therapies.

In the late 1990s, after the results of the Delta trials in Britain and France showed that antiretroviral drugs could delay the disease progression, treatment became widely available. However, it was not until 2001—15 years after my diagnosis—that I started treatment. My CD4+ cell count had dropped to 120 cells mm3, but I was fortunate that I did not experience any complications. I owe that to good genes, a spunky attitude, and luck. HIV affects everybody differently. I felt healthier after starting treatment—like I had a new lease on life. I survived with the help of HIV healthcare professionals, my community, my family, and my friends. I often say that I live my life on a wing and a prayer, going day to day with good support.

Persistent Issues
During the almost 4 decades of my own infection, the stigma surrounding HIV has persisted, including the external, internal, and perceived stigma. Since the early days of the epidemic, people with HIV—especially those of us from the most marginalized communities—have faced the threat of stigmatizing behavior and discrimination from the state, community, media, and individuals. Many of us living with HIV also have internalized stigmatizing thoughts.

HIV can increase a sense of isolation and loneliness, which can have a detrimental impact on mental health. We know that people with HIV have disproportionately higher rates of poor mental health and of drug and alcohol abuse. These issues have continued to persist throughout the HIV epidemic.

How Healthcare Has Changed
The advent of HIV treatment has allowed many patients to feel more in control of our HIV, and that is a positive change. By taking 1 or more pills, managing HIV is now in our hands, and that is incredibly empowering and liberating. The emergence of U=U, and knowing that we cannot pass on the virus if we are virologically suppressed through treatment, has really lifted the burden of feeling infectious and has dampened our fear of passing the virus to partners, friends, and family.

In certain parts of the world, healthcare services have improved because of the efforts made by the HIV community and activists. The patient voice has become stronger and is now recognized as a necessary part of healthcare. The hierarchy of physicians over patients as passive recipients has changed, which I believe is unique to HIV healthcare and has influenced how people in other areas of healthcare now think. We, as patients, are becoming partners in our own care.

Added Issues of Aging With HIV
Regarding aging with HIV, we have seen increased issues of polypharmacy, multimorbidity, and mental health concerns such as loneliness and social isolation. Because of this, we will need a lot more care than our usual HIV management. Many of us will step out of our “HIV bubble” and seek care from healthcare professionals who may not be equipped to manage our specific needs. There are concerns that non-HIV healthcare professionals may display stigmatizing behaviors or use stigmatizing language.

Some of us may feel that we cannot disclose our HIV status. If I have diabetes and go to a specialist, are they equipped to understand my HIV needs? If I go to the family doctor or general practice, am I going to face stigmatization? Later in life, if I need to go into a care home, will I be facing the same issues of stigma as others with HIV are facing now?

My needs as an aging man with HIV might not be different than those of a man who is HIV negative, but will the simple fact that I am gay or that I have HIV affect my care? In 2045, when I will be in my late 70s, what will have changed? How will these concerns be addressed?

What Needs to Be Done
Here is what I think needs to change. First, research addressing HIV healthcare for the aging population needs to expand. We do not have enough data. We are still aging. We are still in our first cohort of people living with HIV, and we have more to learn to prepare the next generation who inevitably will walk in our shoes.

Second, HIV and other healthcare professionals (eg, internists, endocrinologists) who offer care to patients with HIV need to work in coalition around the multitude of health conditions that might affect us as we age. Together, we can answer some important questions. What lessons are being learned? How will this information be shared across the different health conditions?

Lastly, speaking as an activist, we need to be more respectful, understanding, and accepting of our aging community. We live in a world where ageism is an issue. People do not always respect the lives and experiences of older people—even though we have so much to tell others about what is going on with our bodies and about our lived experiences. We have been through trauma. Many of us are suffering from posttraumatic stress from our early experiences of the epidemic. We have lost lovers, jobs, and homes. Yet, still we thrive. There is so much that the world and our communities can learn from our story of resilience.

Your Thoughts?
What are the biggest issues faced by the aging patients with HIV in your community? Answer the polling question and join the discussion below.

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