Deal With It: the untold stories of hepatitis C in Canada

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In 2013, the Victoria-based organization Hepatitis C Education and Prevention Society, known as HepCBC, rallied local patients and clinicians to be interviewed for a new film which will make its Cinecenta debut on September 30th. The film, Deal With It: The Untold Stories of Hepatitis C in Canada, explores the growing challenge that hepatitis C treatment is posing to the foundational philosophy of universal health care in Canada. HepCBC has made the film accessible by offering admission by donation, and a forum is scheduled to follow the screening.

Perhaps not surprisingly, the production and screening of Deal With It has recapitulated numerous debates ranging from the status of health care and sufficient access to treatment in both the United States and Canada, to the involvement and role of Big Pharma in raising awareness for various health complications.

With the federal government of Canada increasingly cutting universal health care funding, and in the hopes of raising public awareness around the issue of hepatitis C treatment, an uneasy alliance between Big Pharma and HepCBC was struck to support the production of Deal With It. However, there seems to be a bitter irony at play since the company that provided the initial funding for the documentary, Gilead Sciences, is the first pharmaceutical company to enter the market with a new generation of drugs designed for Hepatitis C virus (HCV) treatment.

As promising as these new treatments can be (as they are less toxic and feature shorter treatment spans), Gilead has stirred up considerable controversy. Just this month, an investigation was launched in the United States into Gilead’s price tag of $1 000 a pill for these new treatments. These pills, taken once a day for a span of 12 weeks, will cost somewhat less in Canada (currently estimated at $640 per pill), though the B.C. Ministry of Health is now privately negotiating a better deal for public health coverage as the current ‘standard of care’ can cost anywhere between $11 000 and $60 000 (the formulary is complicated). For now, until the newer drugs that will have more affordable pricing can go through the lengthy Canadian approval processes, the Big Pharma problem remains, and as Deal With It demonstrates, the standard of care simply does not work for all.

At the same time as the B.C. Ministry of Health has been conducting its private negotiations, Quebec has already adopted full public coverage for the new drugs, allowing almost everyone living with HCV access to care. This decision was based on evidence that it would be less expensive to provide this kind of access to care instead of treating an increasing number of complications that can arise from untreated HCV, such as liver cancer. Conversely, in the United States, recent studies by researchers indicate the opposite: that treatment costs would vastly outweigh the savings of leaving people untreated. It’s important to remember that the two economies, and health care environments, of the United States and Canada are very different, so any comparison is unwise—even biased—given the grand differences in health care costs between countries.

In recent years, public health advocates have called for increased public awareness regarding HCV, and have particularly pushed for testing of all baby boomers (individuals born between 1945 and 1965). Lack of sufficient physician knowledge is considered a barrier to eradication of the virus, as most people assume HCV testing is included with their regular blood work, and this misconception is often not clarified by many general practitioners. Additionally, further assessment of overall health damage through sufficient monitoring of liver fibrosis is often not maintained after diagnosis, which is crucial information needed in order to plan any potential course of action. There has also been no effort to track down women who were given the blood-based product Roh-gam for pregnancy complications in the era before donor blood screening for HCV. More significantly, historical inoculation programs conducted in the north prior to the modern practice of individual sterile needle use is another factor that complicates our knowledge about the prevalence of HCV. Not to mention, we are all still sorting through the aftermath of colonization, residential schools, and, as researcher Bruce K. Alexander describes it, widespread dislocation of cultures. In essence, these challenges, combined with a lack of support for a comprehensive national strategy for science based action on HCV, are costing lives.

The Canadian Association for the Study of the Liver published a paper that estimated being infected with HCV costs a patient, on average, $65 000 in out-of-pocket expenses. Many live in smaller communities where stigma and ostracization prevent disclosure. In Texas, a unique program called Project Echo was developed, which could be a model that addresses health care issues in rural areas of BC in a cost effective manner.

Deal With It is tragic, yet it is also hopeful and light hearted. It outlines the HCV problem in an accessible way, helping us to understand this sleeping giant— a giant that is taking too long to wake. We can look ahead with the understanding that eradication of the virus is within our grasp. Indeed, it is believed to be possible by 2035. However, we need a national strategy to get it done.

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