I had the honour of attending the recent and first-ever World Hepatitis Summit in Glasgow, Scotland from September 2-4, 2015. What a treat it was to come together with hundreds of other people from around the globe to discuss the often ignored health issue of viral hepatitis. Here I was, “amongst my people,” talking like crazy about viral hepatitis as if it were important or something. How new and novel, because here in Canada viral hepatitis is the conversation we never have, despite the fact that at least 250,000 Canadians are affected by it.
Viral hepatitis is the health condition that has managed to fly under the radar for far too long. Why? Well, there are certain things about hepatitis C, for example, that don’t help: it’s a virus that often takes its time in damaging the body, and some people live a very long time with Hep C without any symptoms. Additionally, hepatitis C lacks a certain sexiness and dignity. Some diseases have higher empathy appeal than hepatitis, either because they take lives quickly or—and this part is important—they aren’t constantly associated with illicit drug use and “bad behaviour”. Hep C is “the slow acting disease with questionable moral character!”
Furthermore, there is no singular “face” to hepatitis C. In contrast to the assumptions about who gets Hep C, people who are infected with the disease are not a homogeneous group – we can’t make any easy generalizations about them and they don’t all party at the same nightclub. Hep C is not a disease of only the poor or only drug users, or only boomers, or only prisoners, or only people of colour… So if the disease doesn’t belong to anyone specifically, then somehow it came to belong to no one. And governments can easily ignore a disease that has no face, no collective discourse, and no mass political mobilization.
Hep C gets the occasional Federal nod in terms of settling the financial score with Canadians who were infected through tainted blood and the odd bit of prevention and research money. But the prevention, care and support dollars allocated to Hep C from the feds is nowhere near on par with the burden of the disease to Canadians and the healthcare system.
Back to Scotland, where for five great days, I (and people like me) got to talk about hepatitis. We saw health ministers from other countries who were talking about hepatitis like it meant something. We listened to public health officials from around the world lay out their hepatitis treatment plans – how great is that? It is totally cool that Scotland, Brazil, Egypt and even Georgia have a plan for treating their infected citizens, and for investing appropriate resources in proportion to the burden of disease.
Attending those presentations made me proud to be a world citizen and filled me with hope that maybe hepatitis C could be eradicated in my lifetime. And all the while I looked for Canada. Oh Canada! Where were you? You weren’t on any of the panels with the other health ministers. There was no one there talking about the plan for Canada. Why? Because we don’t have one: no national strategy, no appropriate resource investment, and no vision. Rather than leading the conversation, Canada has opted out of the conversation. Where is our vision for a healthier Canadian society? Where is our vision for leading the way in addressing a significant public health crisis in our country? We have an effective cure for hepatitis C. We have a health care system in Canada that could deliver that cure to the Canadians who need it. We could conceivably eradicate the disease in this country. We could be leaders too! How cool would that be? Oh Canada, hepatitis in all its faceless unsexy undignified glory is ready. Please make a plan and start a conversation – you know – like it means something.
Patricia Bacon is the Chair of Action Hepatitis Canada (AHC). The AHC is a national coalition of organizations responding to hepatitis B and C. Our work engages government, policy makers, and civil society across Canada to promote hepatitis B and C prevention, improve access to care and treatment, increase knowledge and innovation, create public health awareness, build health-professional capacity, and support community-based groups and initiatives.