George is one of the lucky ones. As a 65-year-old man living with HIV, he once thought he would be dead by now. But the news isn’t all good.
At a time when his boomer peers are retiring, selling homes and flipping through travel guides, George and his partner, who also has the disease, face an escalating number of health crises more common to people decades older, and with nearly depleted financial resources to deploy. “That hope isn’t there for me,” says George of his old-age plans.
He is a tall man with patrician features, and as he sits in a meeting room at Toronto’s Fife House, an organization that provides affordable housing and social supports for people living with HIV and AIDS, he shares his bewilderment at the paradox that by successfully keeping his HIV under control, he must now face new, unforeseen health consequences. (He asked not to be identified by his full name to protect his and his partner’s privacy.)
Because while the diagnosis is not the death sentence it was in the 1980s, aging with HIV has become the next battle. As research and social services scramble to catch up with people like George and his partner, they are, for better and worse, at the vanguard of our culture’s complicated battle with HIV and AIDS.
In Canada, the number of older people with HIV has doubled in the past 20 years. Doctors, researchers and community support organizations are turning their sights to this bulging demographic, learning to care for a group that didn’t expect to grow old – in a system that isn’t ready for them. George’s partner has been in and out of intensive-care units about a dozen times this year, for example, but the idea of long-term care doesn’t seem like a good fit for a gay couple in their 60s, just yet.
So, even though the health of those living with HIV may have been stable for years thanks to improved medications, “they get shackled to the health-care system” as they age, says Dr. Philip Berger, long-time AIDS physician and chief of the department of family and community medicine at St. Michael’s Hospital in Toronto.
In addition to many problems that accompany the virus, such as dangerous weight loss, other age-related conditions may be accelerated due to the effects of potent antivirals. HIV medications can, for instance, affect fat distribution and lead to fat around the torso, a risk factor for many health problems such as diabetes. Some HIV medications cause bone degeneration and lead to osteoporosis. Kidney disease is affected by both HIV and the medications used to fight it.
Dr. Gordon Arbess, director of the HIV program in the department of family and community medicine at St. Michael’s Hospital, says more than half of his HIV patients are over the age of 50 and facing accelerated aging. “When you see these patients, it’s a legitimate phenomenon. Some look 10 years older than they are.”
Also increasingly common is HIV-related dementia, which can cause patients to forget to take their medications and speed up a decline in health.
Neuropsychologist Sean Rourke of the University of Toronto recently published a review of research papers on the subject of the “greying of HIV” in people over the age of 50. He says that in the 1990s, the medical community and HIV patients pegged their hopes on combination therapy – the use of multiple antiviral medications to suppress the virus instead of the single medications that seemed to become impotent over time.
“We thought combination therapy was the solution and end-all,” Rourke said. “We’ve lost ground. People with HIV are living longer and the health-care system hasn’t adapted to that. Clinics still operate the same way as when the epidemic was at its height.”
The shift in thinking needs to happen for aging patients, too. There’s a particular “existential confrontation” many deal with, says Berger.
“A number of my patients are astonished they’re still alive,” he says. “But many of them have had their entire social group wiped out. Some are the sole survivors. It’s a common experience to be lonely and sad.”
Tim McCaskell is 62 and has been living with HIV for more than 30 years. “I’m one of the few who made it through the first wave,” he says. In the early days, he says, many of those diagnosed didn’t adopt healthy lifestyles. “They decided to party and get it over with.”
Despite the fact that he exercises, doesn’t smoke and eats a mostly vegetarian diet, McCaskell says he had to retire from his job in education in 2001, about 10 years earlier than he’d hoped, after it became clear that work stress was affecting his blood counts and he was losing weight. He’s now being monitored for neurocognitive changes and bone degeneration.
“Even through the worst days I made it a priority to make sure I was exercising, weight training and doing cardiovascular exercise,” he says. “Who know what happens when I can’t maintain it?”
Beyond the myriad health issues those in the over-50 group face, there is also a cascade of related lifestyle and financial co-morbidities. Men like Tim and George retire early and go on disability benefits, only to see that support shrink or vanish at age 65 as the Canada Pension Plan benefits replace them – and just when medical costs increase. “You learn to die, then live, then live with no money,” George says. “It’s a constant loss story – career, friends, health.”
Many experts worry that most traditional long-term care facilities may not have dealt with people living with HIV, let alone the demographics long associated with the disease: men who have sex with men, drug users and homeless people.
In Toronto, a three-year pilot project aims to create a model of care, a partnership of 10 agencies including Fife House, St. Michael’s Hospital and various home-care providers, responding nimbly to clients needing medical, housing or social help. As a Canadian centre of HIV services and treatment – families will relocate patients to Toronto in the hopes of accessing better services – many experts are watching with interest. Health providers across the country report similar demands on care, as well as gaps.
The ethos is similar to one many in the field of aging ascribe to; offer enough “wraparound” care to keep people like George and his partner in their homes as long as possible.
For now, George and his partner live in an apartment, but mobility and financial issues may lead to a downgrade in coming years. He’s convinced financial woes add to the stress he blames for his heart disease. George says the relationships now woven around him via the pilot project have saved his sanity. Case workers have helped his partner find a closer primary-care doctor and have arranged respite breaks for George.
“This has made my life so much easier,” he says.
Editor's note: An earlier version of this article incorrectly described a Toronto pilot project as a partnership of 60 agencies.Report Typo/Error