⚠️ LATEST UPDATE: NEW PMPRB REGULATIONS DELAYED UNTIL JULY 1, 2021
Time is running out!
NEW PMPRB REGULATIONS DELAYED UNTIL JULY 1, 2021!
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 July 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…
Our message was heard! On December 30, 2020 – just two days before the new PMPRB Guidelines were due to come into...
42% of new drug launches in Canada were delayed for 6+ months or not launched here at all
18 new molecules being studied globally for PNH, but zero confirmed launch plans for Canada
Still only 1 treatment for PNH accessible through public funding across Canada
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.
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