The faces of hepatitis C
Men and women who’ve lived with the disease share their stories of triumph and tragedy
“It’s like family. . . . Belonging to the program is more important than the treatment.” STEVE VILLENEUVE 67-YEAR-OLD MEMBER OF THE TORONTO COMMUNITY HEP C PROGRAM
Steve Villeneuve is grateful for access to a new wonder drug that cured his hepatitis C in just three months.
But the support he received for the past eight years to get here is the real miracle, says Villeneuve, 67, who has spent much of his life in an alcoholic and drug-filled haze.
“I’ve got cirrhosis. I still drink heavily. I don’t eat properly. But this program is adding years to my life,” he says during a recent meeting of the hep C continuing care group at the Regent Park Community Health Centre.
“It’s like family. . . . Belonging to the program is more important than the treatment.”
The centre is part of the Toronto Community Hep C Program, a partnership that also includes the Sherbourne Health Centre and the South Riverdale Community Health Centre.
The partnership is celebrating Villeneuve’s story and those of 17 others from the program who created clay sculptures for an exhibit held July 28 at the Gardiner Museum of Ceramic Art to mark World Hepatitis Day. The art will continue to be displayed throughout the summer and fall at the health centres.
The Face of Our Story details the artists’ hepatitis C journeys through clay sculpture and explores the themes of stigma, discrimination, rebirth, resilience and perseverance in the face of an often indifferent health care and social service system.
An estimated 250,000 Canadians are infected with the blood-borne virus which is a leading cause of chronic liver disease and liver cancer.
Although just 0.6 per cent of the general population is believed to be infected, the prevalence of hep C in marginalized communities, such as injection drug users, has been pegged as high as 66 per cent.
But many in this vulnerable group aren’t eligible for treatment because they don’t have private drug plans to cover the costly medication — from $700 to $1,000 a day for a new 12week cure.
Government policies that limit treatment to those already showing signs of liver damage and discourage alcoholics and drug users from seeking help are other barriers.
Many of the artists in the exhibit had to wait years before being able to access treatment for their hepatitis C.
Villeneuve’s ceramic self-portrait is set against a foreboding black background representing a “life that has been pretty dark,” he says. “I included the hypodermic needle and whisky bottle to represent the alcohol and drugs that have been central to my life.”
But the brightness of Villeneuve’s face in the sculpture reflects the future he hopes to build around helping others deal with their illnesses. He has just completed a 16-week community support worker program and hopes to help run the type of support group he continues to attend. The community hep C program began in 2007 in response to policies at hospitals that refused to treat substance abusers. At the time, treatment involved up to six months of interferon injections and other chemotherapy-like drugs with punishing side effects that often didn’t eradicate the virus.
Physicians believed those who drink and use drugs were poor candidates and most were left out, says Zoe Dodd, who helped develop the program.
But there was no scientific reason to deny or delay treatment to alcohol and substance users until they were clean for six months, she says.
“Our program really proved people can take treatment and still (drink and) use drugs,” she says. It also proved that when participants get help for their hep C through a supportive, low-barrier program, other health problems are addressed. Participants are also connected to better housing and income support.
More importantly, the weekly treatment groups provide moral support for a group of people that has been extremely marginalized, she adds.
“For so long the medical system has been telling them they aren’t worth treating, that they aren’t valued as human beings,” she says.
The treatment groups have become so successful that five years ago, the program created a weekly continuing-care group at Regent Park for those waiting for treatment or already cured. In addition to lunch and companionship, the group participates in barbecues, outings and art projects, such as the Gardiner Museum project.
The recent introduction of costly new oral drugs such as Harvoni that cured Villeneuve in a matter of months with few side effects earlier this year, has revolutionized hep C treatment.
It’s part of a new menu of directacting anti-viral drugs that Health Canada began approving in 2014. But the high price is throwing up barriers again.
“We need the government to ensure affordable pricing that will make these new drugs available to everyone with the disease,” Dodd says. “It shouldn’t be limited to only those who are ‘sick enough.’ ”