More than four decades since the beginning of the AIDS epidemic, a generation of patients once told they had no future are living into their senior years.
"At the time, it was a death sentence," says Billy Newton-Davis, a 75-year-old theatre performer and recording artist based in Toronto, who was diagnosed with human immunodeficiency virus (HIV) in 1986.
"There was no cure, no help. It was devastating."
HIV is transmitted sexually and through blood. Left untreated, it can cause acquired immunodeficiency syndrome (AIDS).
Billy is one of many patients who receive care through UHN's HIV and Immunodeficiency Clinic, where decades of sustained research has turned what was a fatal diagnosis into a manageable, chronic condition. Life expectancy is now approaching that of the general population.
"This is the first generation of people who have been able to reach geriatric age because of how well we've been doing in HIV," says Dr. Sharon Walmsley, infectious disease specialist and director of the clinic since 2021.
But over the years, Dr. Walmsley says UHN clinicians have had to adapt and expand their treatment practice to meet the evolving needs of HIV patients as they age.
Today, the clinic provides integrated care across infectious disease, geriatrics, pharmacy, nursing, social work and psychiatry to help patients, like Billy, live well with HIV.
UHN researchers are also studying social and behavioural factors that shape long-term health in this population to better understand how to support them beyond medical care as they grow old.
Complexities of aging with HIV
Dr. Walmsley recalls when the clinic first opened in 1983. Treatment options for patients with HIV/AIDS were limited and outcomes were poor. The virus constantly presented clinicians with new challenges.
"I was on the verge of giving up. It was so distressing," Dr. Walmsley says.
In the decades since, advances in antiretroviral treatments have changed outcomes for patients with HIV.
While treatments have made long, healthy lives possible, Dr. Walmsley says care becomes more complex with age.
"People living with HIV have this residual inflammation — something we call immune activation — which can bring on many comorbidities," she says.
"Diabetes, hypertension, heart disease — all of these things are seen at a younger age and at a greater frequency in people living with HIV."
That finding reshaped how the clinic cares for patients and brought on new expertise.
"This population was originally thought to never be able to age, and now they're aging at an accelerated rate," says Dr. Luxey Sirisegaram, a geriatrician who works in the clinic.
Her job is to investigate, diagnose and treat the early onset of geriatric diseases as soon as possible, in lockstep with the rest of the HIV care team.
That means co-ordinating with pharmacy colleagues to ensure HIV drugs don't interact with geriatric prescriptions. It also means keeping an eye out for medications that may cause detrimental side effects for an aging person, such as bone thinning, delirium or an increased risk of falls.
Socio-economic strains — such as poverty, poor diet and addiction — make the picture more complex.
Perhaps the most significant risk factor Dr. Sirisegaram sees in her clinic is social isolation.
"Social isolation means you don't have any connections," says Dr. Sirisegaram. "It's really just you functioning on an island in the world."
That can have serious consequences for older adults living with HIV. Social isolation is linked to a higher risk of both physical and mental health issues, including frailty, poor self-management and cognitive decline. Studies have also shown this population is up to seven per cent more likely to develop dementia because of it.
Dr. Sirisegaram addresses social isolation as part of every visit, working with patients to plan ahead and help them find supports.
"So much of their life hasn't been on their terms," says Dr. Sirisegaram. "At least giving them this grace for their golden years is something we can do."
Building trust and a future
Billy knows that feeling well. With the shame he carried from the stigma and the fear of experimental treatments failing, seeking care — or any kind of support — was a scary thought.
"For years, I was just running and hiding. It was a really bad situation," Billy recalls. "I didn't trust anyone. I didn't ask questions. I didn't want to know."
But when Billy arrived at UHN's HIV clinic back in 1995, he says the shift in his mindset was almost immediate.
"The clinic having this multidisciplinary, integrated team solely dedicated to HIV ... that whole effect just made you feel like: I am going to be OK," he says. "I don't need to be scared. I have everything here that I could possibly need.
"I was ready to talk about it because of the love and care that I got at the clinic," he says. "I no longer felt like I
was HIV."
He has since become a four-time Juno Award–winning artist and continues to perform, record and collaborate with prominent figures in the music industry. He also uses his platform to raise awareness about HIV/AIDS.
"I keep thinking about the next record I'm going to make, the next show I'm going to do," he says.
"Now I'm so alive. I'm so vibrant. And so happy."
