Today marks seven years since Madi started the amazing wonder drug Kalydeco. Since then, her health has completely turned around and she is living an amazing new life.
Since 2013 when Bradford rallied around our family, Madi has successfully completed high school, won a number of advocacy awards, become a Sick KIds Ambassador as well as a Global Brand Ambassador and Apprentice with the non-profit InvisiYouth.
Thanks to the Kalydeco she was able to train for a five-day trek on the Great Wall of China which she successfully completed last September. She also speaks across Ontario to share her story and spread awareness for Cystic Fibrosis.
All of this would not have been possible without the amazing support of the people and businesses in Bradford. We are forever grateful.
Madi and I despite having "her" drug covered for Cystic Fibrosis have not stopped advocating for the rest of the CF community. We have continued to advocate for the coverage of Orkambi, meeting with (provincial health minister) Christine Elliott in the fall.
Most recently, as negotiations for Orkambi are ongoing, we have had to turn our attention the a serious issue at the federal level. Changes to the Patent Medicine Prices Review Board (PMPRB) are making the availability of new medications impossible.
Changes to the current regulations have drug manufacturers unable to submit their drugs to the extreme cost cutting expectations. We have been working with a grassroots organization called CF Get Loud. We have done a number of advocacy initiatives included a Town Hall which brought together CF Canada, CORD, and CF Treatment Society to explain and discuss the challenges facing patient access to medications today in Canada.
Our most recent initiative, Letters for Lives, has garnered nearly 9,500 responses to the PMPRB during the current consultaton.
The newest CF drug, Trikafta, which is the latest and indeed greatest treatment for Cystic Fibrosis is available in many countries aorund the world including the United States who, after seeing how effective it was, fast-tracked it to patients: having the drug approved and to patients in 90 days.
We are once again fighting for the same for our patients. Sadly, due to the new PMPRB changes, this drug has not been submitted, (along with approximately 85% of all drug submitted to the U.S.).
Along with our thanks, we are hoping that our community will take two minutes to complete a quick submission to voice their support for Canadians with Cystic Fibrosis.
I hope you can share our thanks and our latest battle to save the lives of CF patients.
Beth and Madi Vanstone