REGISTER TODAY: #stopPMPRBnow Campaign – How You Can Help 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. 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 […]

REGISTER TODAY: 📢 PNH ADVOCACY WEBINAR – Sept. 10 @ 12:00PM EDT

REGISTER TODAY: Why drug pricing reform in Canada must be stopped to protect PNH patients New federal regulations governing the Patented Medicine Prices Review Board (PMPRB) and the regulation of drug prices in Canada will come into effect on January 1, 2021. On August 4, 2020, the Canadian Association of PNH Patients made a submission […]

PMPRB Reform Already Having a Detrimental, If Not Deadly, Impact on Patients’ Lives

On August 4, the Canadian Association of PNH Patients made a submission in response to the consultation currently underway regarding proposed amendments to the Regulations governing the Patented Medicine Prices Review Board (PMPRB). Despite the most recent changes, as reflected in the June 2020 Draft Guidelines, we remain concerned that the health of Canadians living with PNH continues to be put at risk by the uncertainty generated by the PMPRB reform process to date.

Alexion Steps Up to Help Keep PNH Patients Safe

Patients who are part of the OneSource program and rely on public transit can now take a reimbursed ridesharing/taxi service to and from the infusion clinic where they receive their eculizumab treatments. Alexion Canada (the manufacturer of eculizumab) hopes this service will help alleviate any concerns patients may have regarding taking public transit when travelling […]