LONG-TERM SURVIVORS
Film on HIV and aging
In 1995, Gregory Scratch was told he had 12 hours to live.
His list of ailments was long and life-threatening: pneumocystis pneumonia, cryptococcal meningitis and shingles. The underlying disease? HIV.
Scratch was one of thousands to be diagnosed with HIV in the ’80s and ’90s. The then-mysterious disease claimed the lives of 13,345 people in Canada between 1987 and 1999, according to federal government data.
For Scratch, the life-changing diagnosis came in 1987 after a test showed his immune system was compromised. His doctor told him to stop working, take a medical retirement and enjoy the rest of his life.
But Scratch didn’t die like his doctor told him he would.
Now, at age 65 — 30 years after his diagnosis — Scratch is a member of an often-forgotten group: long-term survivors of HIV and AIDS.
Their stories are the topic of a film called Aging & HIV: A Story of Resiliency, directed and produced by Amanda Gellman, a Windsor filmmaker.
“AIDS has changed a lot,” Gellman said. “It’s no longer a terminal condition. It’s more of an illness that people are living with .... When you’re first diagnosed, you think, ‘Oh my gosh, my life is over.’ We wanted to show people that they can have an inspirational life, despite their medical condition.”
The film focuses on the stories of long-term survivors.
“In the video, seniors living with HIV talk about how their life changed in a positive way, from having HIV,” she said. “It wasn’t the death sentence they thought it was going to be. We want the film to be inspirational.
“People can go online and find all the facts about HIV, and how to prevent it and all that. That’s not what this film was about: it’s going to be an inspirational and educational piece.”
The documentary features six diverse, HIV-positive people from southern Ontario.
It’s expected to be complete by the spring of 2018. Gellman is currently fundraising to complete the film, which she calls a not-forprofit educational tool.
In the 1980s and 1990s, hundreds — and then eventually thousands — were getting sick and dying. By 2011, HIV had killed 18,275 people in Canada. Slightly more than 300 people died in 2011 alone.
Between 2005 and 2015, the Windsor-Essex County Health Unit reported 203 confirmed cases of HIV in the county.
“People were faced with this trauma, and an epidemic that no one cared about,” Scratch said. “So that’s what the anger and the activism came from. The anger sparks the activism. You can either riot or become an activist, you know? We chose activism.”
Dr. Sean Rourke, scientific and executive director of the Ontario HIV Treatment Network, said today’s HIV medications are much more “simplified.”
Today, people recently diagnosed with HIV often take only a few pills a day.
It’s also possible to get one’s viral count so low that the virus is undetectable and, after a period of time, essentially non-transmittable through sexual intercourse.
It’s a departure from the dozens of pills people with HIV once had to take. Scratch called the early drugs used to treat HIV “horrendous.”
Rourke said that for seniors living with HIV, medications taken in the past may have taken a toll on their bodies.
“There’s people living with HIV treatments for many, many years who are going to be aging faster than everyone else,” Rourke said. “And we need to take care of them.”
Today, Scratch is a senior living with HIV.
“It’s something to be really proud of, that you made it,” Scratch said. But it’s also been difficult. “I can’t even tell you how many people I’ve sat with that died,” Scratch said. “Or knew that died .... It was not uncommon to go to at least one funeral a week.”
But “there’s people that have survived,” Scratch said. “Not without the scars ... (of ) what we lived through. Much like people who got through the Holocaust or the wars or anything like that, there were victims that survive and move forward.
“That’s what a lot of the older generation that have been around for a long time, that got infected with HIV, that’s what they are. They’re survivors. And they’ve developed certain coping mechanisms to help them survive.”
Rourke said stigma is still “front and centre.”
“It’s the No. 1 issue for people living with HIV: still experiencing stigma,” he said. “It hasn’t really changed that much in 30 years. We’ve done a better job in providing access, but it still happens .... People don’t access the care because of discrimination.”
“We as a human race have so much work to do in getting rid of judging someone and accepting people for who they are,” Scratch said.
“The stigma is about judgment, it’s about fear. And that comes from not having knowledge. Simple as that.”