There are only 2 drugs for ALS. For some patients they extend life 6 to 19 mos. Health Canada and PHAC approved the 2nd drug after doing a priority review - below. A 3rd drug was submitted to the Gov’t in June. They are not doing a priority review this time. It’s not right. Patty Hajdu

CF patients in NL are waiting for the life-changing drug #Trikafta Premier of NL. We can’t get answers from John Haggie. Other Canadian provinces are already funding this drug, when will #NLPDP? We need answers. #CFCantWait #TrikaftaNOW

Thank you to every #cysticfibrosis advocate across the country, CysticFibrosisCanada staff, volunteer and to Premier of NL Andrew Furey John Haggie for doing what was needed and right. Today is a good day!!! CF Get Loud Canadian Cystic Fibrosis Treatment Society

Thank you Andrew Furey and John Haggie for committing Newfoundland to join Ontario, Alberta, Sask, Quebec, BC, NB, Yukon, Nova Scotia & PEI in making the life-saving cystic fibrosis medicine Trikafta available. Please urge remaining premiers & ministers to join you. #CFcantwait

With me!!!!

Congratulations Nova Scotia! John Haggie when will we see an announcement like this for #Newfoundland?

This is unacceptable! No one should have to make a choice between life-saving medication and shelter or food! Life-changing meds should be provided at no cost to the patient!

It is the time and has been the time. People living with rare diseases like cystic fibrosis don't have time to wait. #cfcantwait

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And next Canada

“The decision is important because it gives pretty clear guidance to the federal Parliament about the limits of its powers to legislate in relation to patents.” Great interview with IMK's Miriam Clouthier who represented us in The Quebec Court 1/3 thelawyersdaily.ca/business/artic…

of Appeal case against the federal government's regulatory approach and guidelines over patented drug pricing. The Appeals Court agreed with arguments presented by the Canadian Cystic Fibrosis Treatment Society to strike down two key provisions of the PMPRB_CEPMB price 2/3

regulations. We again want to thank Miriam Clouthier and IMK for their outstanding counsel and all the advocates who supported us in this important fight which was a win for all of Canada's rare disease patients. 3/3 #cdnpoli #CDNhealth #CFcantwait

I support the implementation of Canada's Rare Disease Drug Strategy CF Get Loud Canadian Cystic Fibrosis Treatment Society CF Adventurers ALS Action Canada Jesses Journey Please share with your followers. We are stronger together. canada4rare.ca #Canada4Rare #saverarelives #support via CORD

👏to #Ontario & Victor Fedeli for today's #LifeSciences strategy - a huge step 👉 stronger economy & innovative health system for all of us in the rare diseases community - here's a short message from RAREi Chair Bob McLay @RareDisorders Life Sciences BC #Canada4Rare #ONPoli

List price and beer price are two different things! Tell the full story.