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Optimizing HIV Care in Later Life
Optimizing HIV Care From Adulthood to Later Life

Released: December 04, 2023

Vincent Crisostomo
Vincent Crisostomo,
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Key Takeaways
  • HIV treatment is not one size fits all. Physical, mental, spiritual, and social health all should be taken into consideration when designing a treatment plan.
  • An important aspect of HIV care is identifying organizations, services, and other resources that can be tapped into and providing this information to people who might otherwise find navigating the system to be overwhelming.

I am a 62-year-old, queer-identifying Chamorro (Pacific Islander) male who is a long-term HIV/AIDS survivor. I acquired HIV in October 1987 at the age of 26. At 28, a test confirmed what I suspected, and I received an AIDS diagnosis in September 1995.

This year marks 36 years of living with a virus that I was told would take my life by the time I was 30. My journey has been characterized by numerous traumas and tragedies, but also incredible triumphs. I have dedicated more than 30 years to HIV/AIDS activism and LGBTQ communities. I am passionate about bringing healthcare to all and social justice equity to people of every sexual identity, HIV status, gender, race, and age.

I am glad to be alive to share my lessons learned when so many of my generation are not. This was the case at our October 12, 2023, symposium in Boston during IDWeek titled “Breaking Down Barriers: Dialogues on Optimizing Engagement in HIV Care.” 

Prioritizing the Individual in HIV Care
The introduction of effective HIV treatment in the later part of the 1990s meant that HIV was no longer a death sentence. Those in the field started seeing their clients living into their 50s, 60s, 70s, and beyond. In fact, in San Francisco as of December 2021, just under 75% of people living with HIV are older than the age of 50. Experts are projecting that by 2030, 70% of people living with HIV in the United States will be 50 or older.

Yet, despite the availability of life-saving treatments, not everyone is able to adhere to their HIV medications, and access is not guaranteed for all. Major reasons that some people living with HIV struggle to remain engaged in HIV care are the structural barriers including, but not limited to, transportation, childcare, job issues, long appointment wait times, language barriers, and incarceration. People living with HIV may lack insurance or a primary care provider, experience food insecurity and housing insecurity, or be without a house. The list goes on, and each case is unique.

How to address or prioritize issues should be up to the individual who, working in partnership with their medical provider, will hopefully come up with a treatment plan that works for them.

Many providers treat the physical symptoms of HIV but neglect the stigma, depression, trauma, unresolved grief, and substance use that can be part of living with HIV. Spiritual needs and social connection must also be factored into HIV care. In particular, social connection is critical to ensuring equitable access to HIV care resources.

An area may be resource rich, but if people are not told these services exist, they cannot access them. Equipping every clinic with a guide to community resources and, if possible, a social worker or staff to help navigate the system can be extremely helpful. Establishing partnerships with local community-based organizations and nonprofits, in my opinion, is crucial.

The social issues that people living with HIV face only grow more complicated with age. In my work, I often contemplate what case management for people living with HIV will look like as they age, when issues become more complicated and the individual requires more support. This issue was clearly illustrated to me when a client who had been unhoused for 10 years managed to secure an apartment unit in a building for seniors, but it took 7 people from 4 agencies with various expertise to stabilize him to the point that he could stay in the unit. Crucial to this was his personal friend who was hired to be his IHSS (In-Home Health Service) Worker.

As the population of people living and aging with HIV grows, it is imperative that we continue to support their access to community resources and prioritize their mental, as well as physical, health.

ART Is Still a Complex Journey
Although HIV is no longer the death sentence it once was—and those testing positive today will probably not experience the trials that we did in the 1980s and 1990s—it is still a complex journey. Treatment regimens have improved, and side effects are gentler than what my generation experienced, but switching from a successful, well-tolerated regimen to a newer regimen that may offer improved safety but may not be as well-tolerated is still challenging. In addition, many older people living with HIV face these major changes without the benefit of someone knowing their history as the physicians who have guided their treatment for years retire.

Personally, I recently changed my treatment regimen, which had been largely the same since 2002. My viral load was suppressed, but one of the medications was creating some issues. I went from 4 pills once daily to a regimen that involved taking pills and supplements morning, noon, and night.

I struggled with it. I have to admit that I initially felt angry at my much younger doctor for putting me on such a complicated regimen. However, after 5 months, I am seeing improvement. Although I have been told that I am a formidable advocate, part of my journey is still learning to be a better advocate for myself and my community.

Sharing Lessons Learned
I started writing this article more than a week ago. My intention was to get it out earlier, but as is often the case, the universe seems to have had other plans.

Last Sunday at dinner, my friend who is also a long-term survivor and whom I have known since 1980 informed our circle of friends that spots on his body were found to be Kaposi sarcoma. As if that was not enough, the doctors also found a massive tumor on his liver.

In addition, my program manager informed me that, after 35 years of community service, he would be retiring. Our organization is also relocating, and we need to be out of our current location within a couple of weeks.

And this morning I received notice that a friend and mentor had passed in his sleep overnight.

In the face of these losses and life events, it is sometimes hard to think about taking your pills. However, I am grateful to be alive to share my lessons learned when so many of my generation are not.

Your Thoughts?
How do you support the mental and physical health of the people living with HIV whom you see in your practice, particularly through the process of aging? Leave a comment to join the discussion.