As we wrap up a year that has brought many unprecedented challenges to Canadians, and especially those already facing health challenges, we are also coming to the end of our hard-fought campaign against reforms to drug pricing in Canada.
Thank you to so many within our PNH family and extended families for participating in the #stopPMPRBnow advocacy campaign. With your help, we’ve engaged with 172 federal and provincial government decision makers, federal representatives and party leaders more than 30,000 times through email, Facebook, Twitter and the news media. Without a doubt, our voices were heard!
Here are some of the recent news stories featuring two brave PNH advocates:
- CTV’s Your Morning
- Global News Montreal
- Montreal Gazette
- CTV News Calgary
- Danielle Smith Show 770 CHQR Radio Calgary (Start listening at 39:46)
We knew from the start that it would be an uphill battle against PMPRB reform to ensure that those living with PNH and other rare diseases will continue to receive access to new therapies and clinical trials. With Parliament rising on December 11, no further parliamentary business will occur for the remainder of the year. We do not know what will happen on January 1, 2021 when the new PMPRB Guidelines are scheduled to come into force – but we want you to know that we will stay focused on this issue.
If the new Guidelines are enforced, the Canadian Association of PNH Patients will continue advocate to key decision makers to ensure PNH patients’ lives are not being put at risk. Furthermore, we will continue to follow up with pharmaceutical companies such as Alexion, Apellis/Sobi, BioCryst, Novartis and Roche, who are working on advancing new therapies for PNH to ensure these treatments will come to Canada and be accessible to patients.
What’s really exciting is that through our work on this issue, we’ve created more than just a campaign; we’ve strengthened ties between existing members of our community, and have gathered new members along the way. And we must continue coming together as a community to advocate on issues that matter to us.
Please stay in touch! We have exciting new projects coming up in the New Year – including a brand new interactive version of the Guide to Living Well with PNH. In the meantime, stay safe, be well and enjoy the holidays!