Maggie Atkinson was 30 and a successful young lawyer in Toronto when she started experiencing unexplained weight loss, fevers and night sweats.
The diagnosis came back full-blown AIDS.
She had no idea a boyfriend with HIV had infected her eight years earlier, in 1984 — the year before the first HIV test became available, and when AIDS was something happening to gay men in the United States.
Her doctor gave her less than two years to live.
Today, the long-term HIV survivor is 52, and part of the first cohorts of people with HIV to reach middle age, and beyond.
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More people with HIV are living into their 50s, 60s and 70s. But while advances in drug therapy are allowing people with HIV to live longer lives, experts now worry the health system is unprepared to meet the challenging medical and social needs of people aging with HIV and AIDS.
In Canada and other high-income countries, about 30 per cent of all adults living with HIV are aged 50 and over, according to new research to be published next month by Toronto and Montreal researchers.
Released during World Pride week and based on more than 200 studies published internationally, the review article describes the profound psychosocial challenges facing older adults living with HIV, from the toll the virus and the drugs used to beat it back take on the body’s normal aging process, to HIV-related stigma and anxiety and uncertainties about the future.
“With antiretrovirals, now people are living almost normal lives in terms of length,” said Dr. Sean Rourke, a neuropsychologist who heads the neurobehavioral research unit at Toronto’s St. Michael’s Hospital.
“But what we’re realizing is that it’s becoming more complicated. Things are happening earlier than the general population.”
Adults with HIV are developing cardiovascular disease, osteoporosis, kidney and brain problems sooner than is normal. “Sometimes that may be five or10, or 15 or 20 years earlier,” Rourke said. “That can make it difficult for people in their middle-age years who want to be working, who want to be contributing to society.”
HIV can cause mild brain injury from inflammation to the tissues. The phenomenon is similar to a mild concussion, except with HIV, it never goes away. People can have problems with attention, short-term memory and multi-tasking. One study found that older people with HIV have five-fold higher odds of developing memory deficits.
They’re also at increased risk of becoming socially isolated. “They keep on drifting, because they don’t have money to engage,” Rourke said. “They stop working. They may have a roof over their heads but they’re on social assistance because they have to be on social assistance for the medications,” Rourke said.
As they lose friends, some find it easier to be alone, because in addition to the ageism all seniors face, older adults with HIV often need to deal with homophobia and HIV-related stigma as well, Rourke and his co-authors write in the journal, Current Opinion in HIV and AIDS. Many worry about being discriminated against by other older people if they have to move into a seniors’ or nursing home.
They’re also at risk of “deteriorating financial situations and living conditions” because memory and thinking impairments as they age can make it harder to stay employed.
“Health-care providers, front line workers and policy-makers should have a greater understanding of the experience of aging with HIV,” the authors write.
Workplace policies need to be adapted to allow people with HIV to take time off work as needed for medical problems or take rest breaks during shifts, Rourke said. Retirement benefits programs should also be reformed to allow people with HIV to remain in the workforce as long as possible.
More doctors and medical teams also need to be trained for working with HIV, Rourke said.
“We’ve lost ground because we’ve waited for the medications to solve everything, not realizing that these other things are coming up earlier, and we’re not ready to deal with them.”
AIDS forced Maggie Atkinson to stop working and go on disability. She has fought pneumocystis pneumonia (PCP), a lung infection and drug interactions that nearly killed her. She takes 11 different medications twice a day. In addition to HIV, she has osteoporosis, hypertension and asthma.
She has had problems finding the right words or remembering the name of friends. At its worst, she couldn’t remember everyday words like “toaster.”
“The doctors believe that all our organs, our systems, our brains are functioning at between 10 and 20 years older than we are chronologically,” she said.
When she was severely ill with full-blown AIDS in 1994, the homecare she received was a “life saver,” Atkinson said. “And I know that that care is not available anymore because of all the cutbacks.”
A recipient of the Order of Ontario, she sometimes worries about her financial future when her disability ends.
As her own aging parents require more help, and have been hospitalized, “I’ve started to think, I don’t have any children. Who is going to be there to look after me?’”