Today, the Canadian Association of PNH Patients, issued a news release pressing the Federal government to again delay the implementation of the new PMPRB Guidelines to focus its attention on the COVID-19 pandemic.
“Now is not the time for PMPRB reform, especially when so many Canadians are still falling
ill and dying from COVID-19,” said Barry Katsof, Founder and President, Canadian Association of PNH Patients. “We are now hearing that the availability of COVID-19 vaccines will be delayed in Canada due to a lack of manufacturing infrastructure in this country. Similarly, the new PMPRB Guidelines will limit access to important global healthcare innovations and clinical trials for all Canadians, including those living with rare diseases. We are imploring the government to focus on one issue at a time and get it right.”
“The Liberal government must delay and revise the PMPRB rule changes. To try and fix known problems with these new rules after they are put into practice will have a significant impact on patients with rare disorders across all of Canada,” says Tom Kmiec, Member of Parliament for Calgary Shepard. “Just like a software patch, you never, ever roll out a new version without testing it first.”
We are running out of time. The new PMPRB Guidelines are set to come into force on January 1, 2021. We must continue to make our voices heard. Click below to send a tweet to decision makers today! (you must be logged into your Twitter account).
.@JustinTrudeau @PattyHajdu @NavdeepSBains Now is not the time to allow PMPRB to prioritize saving money over saving lives. Focus on #COVID19 and delay PMPRB changes to protect all #Canadians #stopPMPRBnow #cdnpoli #rarediseases