Bradford McIntyre never expected to live to be 63. A year after he was diagnosed with HIV in 1984, he was told he had only six months to live.
But he beat the odds and is one of many Canadians now aging with HIV. New research from the Canadian Observational Cohort Collaboration found the average life expectancy for HIV-positive people receiving antiretroviral therapy is now 65.
“I feel fortunate to still be alive today. Many HIV positive people did not live anywhere near the 31 years that I have lived with HIV,” McIntyre says.
McIntyre has been a longtime advocate for HIV/AIDS awareness and started his website positivelypositive.ca in 2003 to share his story and the latest research. He has a good life and enjoys cooking, gardening and spending time at the beach. But he says aging with the virus comes with its own unique set of challenges. These include health, emotional, financial and social effects.
Research shows that HIV accelerates the aging process. A study recently published in peer-reviewed science journal PLOS ONE found that HIV positive people age approximately 14 years faster. This puts them at a higher risk for age-related health issues such as cancers, high blood pressure, frailty, osteoporosis, kidney and liver disease and neurocognitive disorders.
“Coping with multiple conditions may be difficult especially if they’ve tried to remain high functioning yet are constrained by the effects of HIV, ARVS and aging,” explains Dr. Neora Pick, medical director of the Oak Tree Clinic, which provides care for women and families with HIV/AIDS in B.C. She has seen HIV-positive patients in their 60s, 70s and 80s.
McIntyre has been undetectable for HIV since he started taking anti-retroviral medication in 1998, but deals with chronic health issues. He is coping with osteoarthritis, hypertension, low bone density, neuropathy (a deterioration of the nervous system) in his leg caused by the HIV/AIDS drug AZT, and a chronic thyroid condition. He has also experienced weight loss from both HIV and the medications that help keep him alive.
“I have weighed as little as 128 pounds,” says McIntyre. “In 2004, I had facial reconstruction due to the loss of fat in my face.”
There are also financial concerns that come with aging from the virus. Pick says before anti-retrovirals were introduced in 1996, HIV equated a death sentence, giving those diagnosed little incentive to prepare for the future.
“Many are financially insecure and living in poverty, not because they are incapable, just because it is unfortunate that they were diagnosed before the treatment was available,” she says.
Aging with HIV can also have mental and emotional impacts such as stress, anxiety and depression. Those diagnosed 20 to 30 years ago have had to cope with the loss of many friends to the virus.
“I didn’t expect to live and so I didn’t think that I would actually see those people that I cared about and loved get sick and die,” says McIntyre. “There’s a possibility that I could be the last man standing.”
Positive Living B.C. chair Valerie Nicholson also knows what it’s like aging with HIV. She became one of the growing number of Canadians diagnosed later in life in 2004, before she turned 50. She says she plans to live well beyond the age of 65.
“I have grandchildren that I just adore and I want to be around for a really long time,” she says.
Nicholson says because people with HIV were not previously expected to live so long, there is concern about whether services are equipped to deal with their needs as they age.
“I’m hearing from people living with it for a long time, ‘When I’m in my 70s and 80s where am I going to go? Is there going to be people educated in our needs?’” she says, adding that one of the biggest challenges HIV-positive people continue to face is stigma and discrimination.
“I have seen that in local hospitals, I have experienced that at the dental office. And that’s here in Vancouver. When I think of people in rural communities, they have to face that everyday. It makes me sad.”
Nicholson recounted a time when a doctor “double gloved” because they did not want to touch someone she was with because they were HIV positive.
“I was so appalled and that needs to change,” she says. “That makes a person so stressed and feel so bad and they shouldn’t. I mean no one asks to get HIV.”
McIntyre says part of the problem is a lack of knowledge and awareness.
“I talk to people all the time and they’re not aware of any of the information that I convey around HIV,” he says.
The stigma and lack of awareness means many people choose not to publicly disclose their status. Pick has seen patients lose long-time friends after disclosing. But for McIntyre and Nicholson it is an important part of life.
“For me, I’m still me. Just because I have a virus it shouldn’t change anything about me,” says Nicholson. “People live with many viruses, diseases and cancers and it’s important to speak out, I don’t want to hide.”
“I receive thousands of emails from around the world,” says McIntyre. “Oftentimes there’s an individual that has just found out they’re positive and is thinking the worst. Then they find my website and see that I’ve lived all these years and I’m married and it gives them hope.”