The Hep C Stigma

Hepatitis C is a deadly virus that attacks the liver and is the leading cause of liver cancer in Canada, one of the few cancers that continue to rise in the country. There’s a lot of misconception and ignorance about Hep C amongst the public and (surprisingly) the medical community. Almost immediately following my diagnosis, medical staff bombarded me with false accusations of using intravenous drugs and engaging in promiscuous sexual activity as likely reasons for contracting the disease. I assured them I have never engaged in either practice. A detailed medical review and trace back through my civilian hospital records eventually confirmed that I had contracted the virus when I received a platelet transfusion as a teenager and that the disease had been silently ravaging my liver for more than 28 years.

Over the next several years, my health deteriorated to the point where it was apparent I would need a liver transplant in order to survive. Fortunately, my sister stepped forward and volunteered to donate part of her liver to me as a living donor, saving my life. But the hepatitis C virus remained and would soon again attack my new liver unless a way was discovered to eradicate it from my body.

Approximately a year after my transplant, I responded to a Facebook post from the Canadian Liver Foundation (CLF) looking for hepatitis C patients willing to share their stories as part of its awareness campaign to encourage adults born between the years 1945-1975 to get tested for Hep C. At first it was difficult to speak out about hepatitis C, due to the stigma surrounding the virus; however, the support provided to me from my family, co-workers and medical community convinced me I was doing the right thing. This first awareness campaign led to many other interviews, as well as opportunities to educate the Base’s medical staff, and even the chance to  participate in a documentary about the Hep C epidemic, entitled “Deal With It: Untold Stories of Hepatitis C in Canada“.

Finally, a Cure for Hep C

In November of 2013, I attended a symposium organized by the CLF called “Hepatitis C: From Beginning to Cure.” One of the guest speakers, Dr Jordan Feld, lectured on the advances in treatment for hepatitis C patients and that they were close to developing a 12-week interferon-free drug with little or no side effects and with a 95-100% cure rate. (By contrast, the interferon-based treatments can take close to a year to complete). He aptly named the drug “Perfectovir”.  I walked up to Dr. Feld after his speech and told him I would be running in the Scotiabank Toronto Waterfront Marathon to help raise money for the CLF and to increase donors for the Trillium Gift of Life Network. I also asked him to join my team — Team Perfectovir! Dr. Feld happily agreed to do so. In the meantime, the hepatitis C virus continued to attack my new liver.

I’m Cured!

Last February, my post-transplant doctor informed me of two new drugs, sofosbuvir and simeprevir, which had recently been approved by Health Canada and were curing hepatitis C at rates as high as 90 percent. But both drugs are expensive, costing roughly $86,000 for a 12-week course of treatment. Great news, but that’s also when I learned that Ontario’s provincial drug plan didn’t cover them; I found out, most private plans didn’t either.

The Canadian Forces had looked after me for the last 30 years, more so in the last five, and again they stepped up and agreed to pay for the treatment immediately. On March 10, 2014, I took my first two pills, one of each drug. After just four weeks of treatment my viral load dropped over six million units to just 47.  It’s now been 12 weeks and I’m happy to say I’m cured.

It’s a bittersweet feeling though, because if it wasn’t for the military I wouldn’t have gotten these drugs. I know I am fortunate. Many people are dying because they don’t have access to the new treatments. This disease is curable and the treatment should be available to everyone. No one should have to qualify for treatment, as Hep C patients in Canada currently do.  Canada’s hepatitis C epidemic represents an unprecedented health-care crisis in waiting, as more Canadians infected start to reach end-stage liver cancer, cirrhosis or are in need of a transplant. The costs for a transplant alone are enormous. Canada needs to develop a proactive strategy to ensure access to the drugs and maybe just maybe save thousands of lives, not to mention billions of taxpayer dollars.

Life after Hep C

As for my future, I’m going back to school to obtain a diploma in photography and perhaps start my own business. I’ll always be an advocate for the Canadian Liver Foundation and the Trillium Gift of Life Network. I’ve already registered to be an organ donor. Only one thing left to do and that’s run 26.2 miles! Piece of cake compared to what I’ve gone through already. Please consider sponsoring Team Perfectovir with a donation or by registering to become an organ donor at the link above.

Lance Gibson
Published Monday, September 22, 2014 7:14AM EDT