'The stigma is pretty intense': Ex-Vancouver councillor speaks out on hepatitis C treatment
Credit to Author: Dan Fumano| Date: Tue, 31 Dec 2019 02:12:05 +0000
Former Vancouver city councillor Andrea Reimer is speaking out about her own experience with hepatitis C, a day after finishing the treatment she hopes will cure her of a potentially life-threatening disease that remains widely stigmatized and often secret.
Hepatitis C infection rates in B.C. remain well above the national average, and it’s estimated that about a quarter of the 73,000 British Columbians living with the virus are undiagnosed and unaware they have it.
But Reimer’s decision to speak out this week also draws attention to a new, more positive development in the fight against the disease: she’s part of a surge in British Columbians taking advantage of newly expanded access to hepatitis C treatments, after changes made last year by the provincial government.
Reimer, who has previously spoken publicly about experiences with homelessness and drug use in her youth decades ago, was diagnosed with hepatitis C in 2012, almost halfway through her 10-year service on Vancouver city council. But, Reimer said Monday that she had probably been living with the disease undiagnosed for about 15 years before that.
After learning of her diagnosis, she was shocked to learn that her treatment wouldn’t be covered because her disease wasn’t advanced enough.
“In all the things I’ve heard in health care … I have never been as shocked as I was to hear that I had to be actively dying from this before I could get treatment, and then my chances of surviving treatment were much lower once I was actively dying,” Reimer said Monday, hours after she first publicly revealed her diagnosis with a series of Twitter posts.
But in March 2018 the B.C. government announced chronic hepatitis C medication would be covered by the province’s Pharmacare health plan, regardless of the severity of their disease. At that time, the government said the new all-oral, chronic, hepatitis C therapies are highly effective, curing more than 95 per cent of people treated.
Previously, a chronic hepatitis C patient like Reimer would have had to pay out-of-pocket, an option she said could cost tens-of-thousands of dollars, prohibitively expensive for many patients.
For years leading up to the March 2018 announcement, the Pacific Hepatitis C Network had lobbied the provincial government to expand access to treatment, the organization’s board president, Daryl Luster, said Monday. They applauded the change.
“It makes no sense to tell people: ‘You have to be moderately sick before we’ll treat you,’ ” Luster said. “If we don’t treat people, we aren’t able to cure people. And earlier on is more desirable than later, when they have a more advanced disease. It makes sense financially.”
Curing people earlier and preventing their disease from advancing can lead to better public-health outcomes, Luster said.
The first year after the 2018 change saw a significant increase in British Columbians accessing hepatitis C treatments covered by Pharmacare. Numbers provided Monday by the B.C. Ministry of Health show that between April 2017 and March 2018 3,088 patients in B.C. received Pharmacare coverage for hepatitis C medications, but for 2018-19 that number increased to 4,003 patients — a year-over-year increase of about 30 per cent.
Hepatitis C often shows no symptoms. It’s often spread through intravenous drug use, but can also be spread through other kinds of drug use including snorting, as well as through medical procedures.
Anyone at risk for hepatitis C — including Baby Boomers or anyone who has used drugs before — should talk to a health-care provider about getting tested, Luster said, adding that pregnant women should also consult their doctors about the disease.
Reimer now teaches at both the University of B.C. and Simon Fraser University, and earlier this month was appointed to UBC’s board of governors.
“The challenge is that without people stepping up and saying: ‘I have this,’ or, ‘Someone I know and love has this and this needs to be more of a priority,’ things don’t change. That’s why I thought it was important to say something,” she said. “The stigma is pretty intense.”
It will be another six months before Reimer knows whether the treatment worked or not, she said, but the likelihood of success is high and, regardless, she’s grateful treatment was an option.
“A 95 per cent chance? In my world, I’ve played a lot, lot, lot longer odds than that,” Reimer said. “So I’m feeling pretty good.”