MONTREAL, Dec. 1, 2020 /CNW/ - Today, the Canadian Association of PNH (Paroxysmal Nocturnal Hemoglobinuria) Patients, along with tens of thousands of concerned citizens, is pressing the Federal government to once again delay the implementation of the new Patented Medicines Review Board (PMPRB) Guidelines in order to focus its attention on the COVID-19 pandemic. The rare disease organization's urgent appeal comes just one month before the new guidelines are set to come into force on January 1, 2021.
"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."
Olivia Oliverio, a 24-year-old PNH patient from Calgary, Alberta, is scared of what the future may hold. "Access to my current medication, which is only available through a clinical trial in Canada, is vital. I've experienced life without proper treatment, and I do not want to regress. What happens if I stop responding to my medication, like in the past, or if the medication I'm on doesn't come here?" Ms. Oliverio questions. "I worry that the changes to PMPRB could inhibit my access to the only medication that allows me to continue living, or could prevent future clinical trials from coming to Canada which could help others like me."
Since August 2020, the Canadian Association of PNH Patients has been calling on the PMPRB to stop the implementation of their revised guidelines and make changes that will remove barriers and allow innovative medications to come to Canada. Through the Association's advocacy efforts alone, almost 30,000 emails have been sent from concerned Canadians across the country to federal and provincial elected officials ? with no response to date from Federal decision makers.
"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."
Earlier this year, Cabinet Ministers from two of Canada's largest provinces ? Ontario and Québec ? also wrote to the Federal Minister of Health and the Federal Minister of Innovation, Science and Industry (responsible for PMPRB) to express their collective concerns with respect to the implementation timing of the PMPRB guidelines. This joint letter, written by the ministers of health and economic development, acknowledged the importance of the delayed implementation of the June 2020 Guidelines, and called for a continued focus on protecting citizens as a top priority throughout the COVID-19 pandemic.
"Unfortunately, we are now in the midst of the second widespread wave of this unprecedented public health crisis. Once again, we require the federal government's singular focus on safe-guarding the health of all Canadians, including those living with rare diseases," added Mr. Katsof. "There is no other option before us. The Federal government must again delay PMPRB reform until we all safely emerge from this deadly global pandemic."
About the Canadian Association of PNH Patients
The Canadian Association of PNH Patients is a not-for-profit Canadian organization formed in 2009. The mission of the organization is to connect Canadians affected by Paroxysmal Nocturnal Hemoglobinuria and advocate for the best possible care for patients and ensure they are equipped with the most current tools and information to help them live well with the condition. Click here to read about the Canadian Association of PNH Patients' advocacy campaign and its recent submission to the House of Commons Standing Committee on Health (HESA).
SOURCE Canadian Association of PNH Patients
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