About the Campaign
#stopPMPRBnow: 3-month countdown to protect PNH lives!
The PNH community is extremely concerned about the proposed amendments to the Regulations governing the Patented Medicine Prices Review Board (PMPRB) set to come into effect on January 1, 2021. Those living with rare diseases – including paroxysmal nocturnal hemoglobinuria (PNH) – cannot accept that lives continue to be put at risk by the uncertainty generated by the PMPRB reform process to date.
We know that PMPRB reform is already having a quantifiable, detrimental, if not deadly, impact on Canadian PNH patients by limiting access to an approved treatment option, clinical trials and global innovations in PNH therapies – all of which are helping to improve, extend and save the lives of PNH patients in other countries.
Without treatment, this life-threatening blood disorder has a death rate of more than 40% after five years, but due to uncertainty in the Canadian market:
- There is still only one publicly funded treatment for PNH in Canada, which will not be the solution for everyone with this disease.
- The reimbursement process for the second Health Canada-approved treatment for PNH (ravulizumab) was halted; whereas where available, 70% of PNH patients elsewhere in the world have been able to switch to this new treatment option.
- An unprecedented 18 novel molecules being studied in PNH around the world, which is largely meaningless to Canadian patients as only one of these clinical trials has sites in Canada.
- There has been no confirmation if, or when, any of the drugs in development for PNH will be launched in Canada – including an extremely promising new treatment that was just submitted for approval in the U.S., Europe and Australia.
Join our #stopPMPRBnow campaign to urge the federal government to put a stop to the proposed PMPRB reform until we can be certain that the lives of Canadians won’t be put at further and unnecessary risk.
Click here to take action now!
To learn more about this issue, click here to read the Canadian Association of PNH Patients’ submission to the PMPRB.
We want to hear from you!!
We hope you will join our advocacy efforts by using the tools on this website. Please reach out to the Canadian Association of PNH Patients (PNHCA) with any questions about our work, to share your PNH stories, or to learn more about our advocacy campaign.
Email: advocacy@pnhca.org
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