The Week in Review: May 11 – May 18, 2018

Friday, May 18, 2018 News Recap: Canada: Promoting Drug Pricing Policy Resources for Patient Groups. Patient groups in Canada shared in a recent survey that they struggle to understand the complexities of drug pricing policy in Canada and that they would like more information. In response, the Drug Pricing Policy Summit Working Groups have put together two web pages that outline various resources and learning opportunities to help patient groups lea...

What it’s like to grow up with a disease that’s kept secret: ‘I felt unclean’

Every family has secrets. For Lindsay Ventura, her mother, and her sister, the secret was a disease. At first it was something they didn’t even know they had, but when they were eventually diagnosed, they decided to keep it to themselves for years out of fear they would be stigmatized for it. The disease was hepatitis C. In 1990, when Ventura was 3 and her older brother was 5, their father was diagnosed with pancreatic cancer. He was given six months t

The Week in Review: December 1 – December 8, 2017

Friday, December 8, 2017 News Recap: URGENT BC Patient and Caregiver Input Request: Vosevi. We need to hear your voice! Patient and Caregiver input is requested by BC PharmaCare on Gilead’s combo of sofosbuvir, velpatasvir, and voxilaprevir (SOF-VEL-VOX or Vosevi™) for Genotypes 1-6. Personal Stories This week we have two great stories of triumphing over HepC: Aidain’s ‘I will never forget the day I found out I had hepatitis c’, and Patric...

‘I will never forget the day I found out I had hepatitis c’

When Aidan Bungey was ­diagnosed with hepatitis C, she feared her dream of becoming a pilot was over. But a new treatment has her reaching for the skies again. Since childhood, Aidan Bungey has dreamed of becoming a pilot. Every Saturday, the Liverpool University student gets up at 5am to climb into a two-seater PA38 Tomahawk with her instructor and take to the skies as part of her flight training. A few years ago though, it seemed unlikely the 21-year-ol

Hep C and me: ‘I was nauseous all the time. I couldn’t gain weight. My skin was itchy and raw’

WHEN I WAS diagnosed with Hepatitis C in the 1990s I was told I’d loads of more serious problems I had to deal with first. I remember getting the result and the doctor turning to me and saying, Patrick, it’ll kill you in 30 years so don’t worry about it. I was using drugs. I’d washed up to an addiction service, exhausted from the drugs, exhausted from the chaos of it all. I was tested. I was given advice that at the time that somehow made sense. Thirty

The Week in Review: September 1 – September 8, 2017

Friday, September 8, 2017 News Recap: She thought her mystery ailment was cancer, but bloodwork revealed a surprise This is an amazing story ...but it could happen to anyone, and we know this because we hear these kinds of stories often. This is why it is so important that Boomers be tested for hepatitis C. Gail Wells got really sick and nobody could figure out why. They looked for cancer, for multiple sclerosis, for vitamin deficiencies, and then s...

She thought her mystery ailment was cancer, but bloodwork revealed a surprise

This is an amazing story ...but it could happen to anyone, and we know this because we hear these kinds of stories often. This is why it is so important that Boomers be tested for hepatitis C. Gail Wells got really sick and nobody could figure out why.  They looked for cancer, for multiple sclerosis, for vitamin deficiencies, and then she was diagnosed with idiopathic degenerative neuropathy – nerve deterioration for no apparent reason, and told to keep a

The Week in Review: June 2 – June 9, 2017

Friday, June 9, 2017 News Recap Somebody Pinch Me This week saw the release of a report from the Cochrane Collaboration which concluded not only that DAAs were ineffective but that they might also be bad for you and not even cure HCV.  The news item was picked up by various media outlets and was hard to miss (No valid evidence $40,000 miracle drug cures hepatitis C – study).  Thankfully other researchers from around the world jumped in on this poor ...

Hep C: Coping and Curing – Book Launch

Author Elizabeth Rains doesn’t know exactly when or where she contracted hepatitis C. She only knows she is a very lucky person who has been cured of a disease that attacks the liver and can kill in its final stages. In a new book, Demon in My Blood (Greystone Books) she recalls past decades of her life, searching for that fatal event that contaminated her blood. Had she received a tainted blood transfusion after the birth of her daughter, or was it from

The Week in Review: May 12, 2017 – May 19, 2017

Friday, May 19, 2017 News Recap Canada Help4Hep – BC Helpline Now Online: Did you know that there is now a British Columbia toll-free hepatitis C peer-to-peer helpline where you can get accurate information and meaningful help that is free of charge and confidential?  Check it out now! Help4Hep – BC Helpline Now Online URGENT! Patient and Caregiver Input Request: We Need to Hear your Voice! Patient and Caregiver input is requested by CADTH on Abb...