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Friday, February 28, 2014

Help save my mom's life

Canadian Agency for Drugs and Technology in Health: Ensure patients in the end-of-life stage of liver cirrhosis have access to the new Hepatitis C cures.

By Jennifer Peever
Ottawa
In 1975, at age 21, my mom Brenda was given a blood transfusion by the Red Cross.  She had hemorrhaged blood during the birth of my half-sister who she had to give up for adoption. The blood the Red Cross gave her was tainted with Hepatitis C and because of this, my mother, 59 years young, now has late-stage Liver Cirrhosis and doesn't have much time left.
A cure has been developed for hepatitis C, and was approved for use in Canada two months ago. Earlier this week we went to her 6 month check up eagerly waiting for the results of her latest tests and hoping for good news.  The specialist confirmed that her cirrhosis had progressed to stage 4, but also that she would be a great candidate for the new drugs!  We were upset that mom is now in the end stage of the disease but we were also excited about the new drugs. They have a 90% success rate with minimal side effects and it's an actual one-time treatment cure.
But because Sofosvubir and Simeprevir are so new, they are not yet funded by OHIP, and at $84,000 the cost is prohibitive for families like ours who do not have private health insurance. Without access my mother will need a live liver transplant very soon, which she may not survive, and which ironically will cost the province more than if she could have access the drugs.
Our specialist told us that the drugs probably won't receive coverage until 2015, and by that point it will be too late for my mom and other patients with late stage liver cirrhosis across Canada.
I've learned that one of the problems in getting public coverage for the drugs is that the agency that approves coverage, The Canadian Agency for Drugs and Technology in Health, has a long queue of drugs waiting for review.  What is maddening is that these two life-saving hep c drugs are not prioritized, instead they are far down the first-come first-served list, even after botox!
It's unfair. We're not asking for a miracle. We know the drugs will eventually be publicly funded. It’s just that people like my mom will die in the meantime because of bad luck and a bureaucratic process that makes no sense! It's like a hospital emergency room prioritizing a broken arm over a car crash victim.
I'm petitioning for the Canadian Agency for Drugs and Technology in Health to prioritize Sofosbuvir and Simeprevir's approval in order to save people like my mom. I'm also asking the Ontario Ministry of Health and the drug company Gilead to consider compassionately giving the drug to my mom and those on their very last legs who can't wait for public coverage approval.
My mom had no idea that she had been given tainted blood until 2000 when a dermatologists did some tests. That is when the we found out that she had given up a daughter for adoption in 1975. At that point mom had to prove she got the hep c through a blood transfusion, which was a long drawn out process of itself. In 2010 Mom started interferon treatment but after 24 weeks of horrible side effects (nausea, hair thinning, depression, lack of appetite etc...) the doctors told her it was all for nothing as the interferon was not working.They've encouraged us to hold on for this moment when the new treatment would become available and here it is!
Brenda is the mother of 5 girls and grandmother to 6 grandchildren the youngest being 18 months old. We would love the opportunity for Nana to be around to get to know the kids before she dies at such the young age of 59.  Mom had had the opportunity on February 7 to reconnect with the adopted "baby", who is now 39 years old. My new sister has expressed to me "She was infected at my birth, and we just connected last week. It's too soon to lose each other now."
I want to do this for my mom and our family and new sister, but also for every other patient dying of Hep C especially those who are victims of tainted blood!
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