For people with HIV, what’s next after viral suppression?
In public health, viral suppression is oftentimes seen as the end point in HIV “continuum of care” graphs, which show the percentage of people living with HIV who are diagnosed, linked to care, on medication, retained in care, and virally suppressed. Now, in the fourth decade of HIV, public health experts are calling for a new paradigm—that includes assessing and improving quality of life for people living with HIV.
“HIV shouldn’t only be about numbers anymore,” said Mark Nelson, MA, MBBS, FRCP, from Chelsea and Westminster Hospital at the International AIDS Society (IAS) Conference on HIV Science. “It should be about the individual. How is their quality of life?”
Over the previous three decades, HIV and AIDS, and our approach to the epidemic, has changed markedly, said Jeffrey Lazarus, PhD from ISGlobal, Hospital Clinic, University of Barcelona.
“We had a decade of providing palliative care and trying to understand the virus. This was followed by a decade where there was the advent of antiretroviral therapy. And we have a current decade where long-term living [with HIV] is a reality.”
Now, he said, we also need to consider what comes after viral suppression, and how people experience aging with HIV.
“It’s no longer about only prolonging life, but ensuring quality of life,” said Lazarus. He recently suggested adding a fourth “90” to the UNAIDS goal, to ensure that people living with HIV have good health-related quality of life.
In San Francisco, about three-quarters of people living with HIV have achieved viral suppression, with levels of HIV in their body so low that they are “undetectable” on viral load lab tests. Other cities and municipalities around the world are also making progress toward the UNAIDS 90-90-90 goals of 90% of people living with HIV diagnosed, 90% on treatment and 90% virally suppressed.
Adding a quality of life goal for cities, municipalities and countries is even more relevant as populations of people living with HIV grows older. In San Francisco, 63% of people living with HIV are now over age 50 (an increase from 52% who were over age 50 in 2012). People growing older with HIV may be more likely to have other health concerns like cardiovascular disease, hypertension, type two diabetes or chronic kidney disease—all which can add to quality of life concerns, said Lazarus.
Lazarus envisions a future where people are treated holistically with integrated care models, and see HIV specialists less frequently. People would not have to access all of their care in one location, he said. The key is that health systems for people living with HIV become “people-centered.”
“Care pathways should be clearer and easier to access. Pre-emptive screening is routine. Personal health tools collect data, and we get real-time feedback. I don’t think this is too far off.”
Re-defining what it means to age: Watch the video showing what it means to live as a long-term survivor by San Francisco AIDS Foundation
Golden Compass: A person-centered program for people with HIV in San Francisco
A person-centered model of care is now operating in San Francisco. Golden Compass, at Zuckerberg San Francisco General Hospital’s Ward 86, is a program for people over age 50 living with HIV which opened in January 2017.
Ward 86 recognizes the unique needs of people living with HIV who are growing older, and designed the Golden Compass program after extensive research on how to best meet the needs of this special population. Monica Gandhi, MD (the clinic director of Ward 86) directs the Golden Compass program with support from the division chief, Diane Havlir, MD. The associate director of the program, Meredith Greene, MD, is an HIV clinician and geriatrician who specializes in caring for older adults.
“We can’t just focus on medical issues,” said Greene. “We have to focus on the whole picture. If you don’t look at the whole picture, you can’t make a difference.”
She said that older adults with HIV may be more likely to have other chronic health conditions like heart disease, kidney disease and more. But, her focus is on the impact these conditions, and others, may have on a person’s life.
“You could have HIV, kidney problems and heart disease and still be walking three miles every day. Someone else might have those exact three conditions and really be struggling to get out of a chair and do basic things for themselves.”
In addition to medical conditions that may be more common in older adults living with HIV, Greene said that there are other social and contextual issues that can affect long-term survivors and impact their quality of life. The experience of traumatic loss, for those who lost many people in their social networks from HIV in the 1980s and 1990s, is one issue that Greene highlighted.
“People may still be coping with traumatic loss 20 or 30 years later. It can absolutely have an effect on your health—whether it’s through depression or grief or wanting to isolate yourself.”
The effects of stigma—from HIV, homophobia, drug use and/or ageism—can compound health concerns. Greene said that ageism is something she sees and notices every day because of her work with older adults. “This is something we don’t talk about. But I see it everywhere, and it affects people and how they feel about themselves.”
Golden Compass was designed with these issues in mind. In addition to providing HIV services and care, the program links people together with a monthly support group. With a focus on holistic care, Golden Compass provides cardiology, bone and cognitive assessments and care. Clients can receive diabetes care, help with mobility issues, and memory assessments and advice. For services not offered at Ward 86, the program links clients to other organizations that offer accessible and affordable services (for instance, if a person needs to buy a new pair of glasses).
“Most people want to be proactive about their health, and want to know more about how to manage their conditions,” said Greene. “Our goal is to help people be resilient as they age. Resilience doesn’t mean that you can do everything in the way you were able to when you were 20. But it means that you can still find a way to make it work.”
People over age 50 in the San Francisco Bay Area (who are both HIV-negative and living with HIV) may access services through the Elizabeth Taylor 50-Plus Network at San Francisco AIDS Foundation. The group provides wellness coaching and social support and organizes social activities and events. Find more information and join the group.