On November 6, PNH Canada submitted a brief to the House of Commons Standing Committee on Health (HESA) to inform the study it is undertaking on the Final Guidelines issued by the Patented Medicine Prices Review Board (PMPRB) on October 23, 2020. Our submission included two powerful testimonials from Canadian PNH patients.
We made our position clear – we are extremely concerned that the new guidelines will limit access to new and innovative treatments, clinical trials and other global innovations in medicine for Canadian patients living with PNH and other rare diseases. We also provided evidence on how these reforms are already having a quantifiable and detrimental, if not deadly, impact on our lives.
PNH Canada has requested to appear before the HESA committee and looks forward to the opportunity to make our community’s voice heard on this important issue for all Canadians!
Read our full submission here
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