National screening guidelines for hep C abandon baby boomers.

Once again, the largest group of people at risk for living with hepatitis C in Canada  – baby boomers – are excluded from the Canadian Task Force on Preventive Health (CTFPH)’s hepatitis C screening guideline recommendations.

As a community-based, lived experience organization, we urge testing of all at-risk groups, including those born between 1945 – 1965 in BC. Two-thirds – some 55,000 people call in that group in here in BC.

We also urge the new British Columbia Minister of Health, when that person is appointed, to consider the extensive data in British Columbia that supports identifying all those in the age cohort of 1945 – 1965 and linking them with care and treatment for better health and budget outcomes.

“If not” says Pacific Hepatitis C Network (PHCN) President Daryl Luster, “and provinces and territories endorse these new guidelines as practice, physicians and public health practitioners will end up doing great harm.”

To abide by the CTFPH’s poorly reasoned guidelines means some people in British Columbia will remain undiagnosed and are or will become sick with liver disease. They may get too sick for treatment. They’re at-risk for premature death and for other chronic diseases like diabetes and heart disease.

PHCN’s Daryl Luster has first-hand experience. “As a person who is part of the baby boomer age group who was diagnosed only by accident, with symptoms for years, the assertion that asymptomatic people will only be harmed by a positive diagnosis is crazy-making.”

And stunningly wrong. It is widely known in the research that people living with HCV can have NO symptoms until they have such advanced disease  that they may not be able to take treatment, may end up with liver cancer and may suffer premature death. We also now know that treating before liver disease sets in yields better health outcomes overall. However, even if treatment isn’t an option, how ethical is it to keep critical information about a person’s health from them? That isn’t a decision for those in the health care system to make alone.

“I am one of the lucky ones” Daryl points out. “I was able to get into a clinical trial – 1 year long – and I was cured. But I still have health issues in part because it took so long to get a diagnosis.”

Another key CTFPH argument against screening the 1945 – 1975 (nationally) age cohort in Canada is that,

“…there are some people in Canada who don’t know they have the virus and if we did screen them and treat them, the cost of treatment would be very high, based on the super-high drug costs.” 

“The comments about price of treating people,” says Daryl Luster, “are once again an insult to me and all of us who are aware that prices in Canada are now substantially lower due to recent negotiations. The cost of ignoring a significant number of people living with hepatitis C will be substantial over time, putting a greater burden on health budgets across Canada, not less. “

In fact, finding and treating people living with hepatitis C saves lives and money. These cost savings were true even before the recently announced new drug pricing for hepatitis C treatments. Now, significantly lower drug pricing, which the CTFPH failed to take into consideration, leaves their argument at best based on inaccurate, out-dated information.

The fight isn’t over yet. This exclusion is not acceptable in the community of those living with and working hard to reach and cure all those living with hepatitis C. We are nearly unanimously united in our outcry against this recommendation and for the inclusion of age-based screening in the national hep C screening recommendations.

In the meantime, if you were born between 1945 and 1975, get tested for hep C. If you test positive, find out if you still have the virus. That’s a second test.  And stay in touch with us.

For more responses to the screening recommendations released this week:

Canadian Liver Foundation

Dr Eric Yoshida

For more in-depth reading about the CTFPHC’s guidelines:

Hepatitis C (2017)

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