By the time Cheryl Reitz got the letter in the mail, it was already too late.
It was 1992 and she had just donated blood for the second time. Canada had just begun ramping up efforts to screen blood donations for hepatitis C, back then a rarely discussed disease.
“It was when people got sick that they decided to go back and check,” says Reitz, whose results came back positive. For all she knew, between her first donation in 1990 and 1992, Reitz may have infected others with the blood-borne viral liver disease that, today in Ontario, kills nearly three times as many people annually as HIV.
Among those most susceptible to the infection are injection drug users, prisoners and HIV-positive men who have sex with men.
Reitz still regrets the possibility that she may have unknowingly infected others. But she was fortunate. When many years later she developed cirrhosis — advanced scarring of the liver — and existing treatments left her debilitated, she was chosen for a clinical trial. It worked.
Reitz’s treatment was novel for the time. Today, more and more drugs are emerging in the Canadian market that are revolutionizing the hepatitis C prognosis.
Among the new entrants are sofosbuvir (brand name Sovaldi) and simeprevir (Olysio). Approved late last year, they already tout cure rates of more than 90 percent while reducing side effects and treatment times. And more options are on the way.
“It’s a stunning change,” says Dr Morris Sherman, a Canadian Liver Foundation chairman and liver specialist at Toronto General Hospital.
Leaning back in his chair at his medical office, Sherman explains that there are at least two anticipated oral treatments as well, developed by AbbVie and Gilead Sciences, that could finally retire the old, lengthy interferon and ribavirin regimens, which involved injections and stacks of pills and cured only half of those who could tolerate their side effects.
Data on hepatitis C and the gay community is scarce in Canada, but foreign studies tend to point toward HIV-positive gay men as a group at higher risk of contracting the illness. While it’s thought to be transmitted only through blood, not semen, an American study published in 2011 that tracked more than 5,000 men who have sex with men over three decades identified “unprotected receptive anal intercourse” as the main sexual behaviour associated with hepatitis C.
The study suggests that hepatitis C infections are on the rise among gay men and names other risk factors, which include the use of intravenous drugs, older age, prior syphilis infections and HIV infection.
Due to the side effects of the older treatments, those co-infected with both hepatitis C and HIV sometimes had to choose which disease to treat first, according to Rui Pires, gay men’s community education coordinator at the AIDS Committee of Toronto (ACT).
“People used to have to put a lot of things on hold in their lives to undergo hepatitis C treatment,” he says. With few to no side effects, the new regimens would be “a wonderful improvement,” he says.
Yet even as the new treatments are applauded by some, healthcare and advocacy groups warn of hurdles such as cost, a lack of awareness and stigma that may derail access for thousands of Canadians. At $1,000 per pill in the US, or $84,000 for a standard 12-week course, Sovaldi has already inspired protests south of the border.
In June, Quebec became the first and only province to approve Sovaldi for coverage. Elsewhere in Canada, only private insurers offer varying levels of coverage for the new drugs, while provinces continue to negotiate with drug manufacturers. Even when taking into account the potential cost-sharing benefits of universal healthcare coverage and provincial bulk-purchase discounts, the price tag is “exorbitant,” Sherman says.
Cost aside, connecting the new treatments with people who have hepatitis C also remains a challenge since many people don’t realize they have the illness. According to last year’s Canadian Health Measures Survey, 70 percent of people canvassed were unaware that they have hepatitis C.
Despite this, the Public Health Agency has yet to recommend screening for gay men, or for baby boomers, who experts believe make up the largest age group among the more than 300,000 Canadians infected.
Meanwhile, despite reporting four times as many cases as HIV in Canada, hepatitis C receives less than a sixth of the federal funding for research and community outreach. According to Pires, there is also no anonymous testing for anything other than HIV.
“Awareness of hepatitis C in relation to groups like gay men and MSM especially is needed, and we need to encourage greater testing among gay men, especially HIV-positive gay men,” says Ed Jackson, a program development director at CATIE, an online Canadian HIV and hepatitis C resource. “It’s one of those things that should just happen.”