News:

Submission to Standing Committee on Health Study on PMPRB Reforms

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 Click here…

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Canadian Association of PNH Patients Launches #stopPMPRBnow Advocacy Campaign

On October 1, 2020, the Canadian Association of PNH Patients officially launched its #stopPMPRBnow advocacy campaign due to concerns regarding the proposed amendments to the Regulations governing the Patented Medicine Prices Review Board (PMPRB) set to come into effect on January 1, 2021 Those living with rare diseases – including PNH – cannot accept that lives continue to be put at risk by the uncertainty generated by the PMPRB reform process to date.  Join our #stopPMPRBnow campaign to urge the federal government to put a stop to the proposed PMPRB reform until we can be certain that the lives of Canadians won’t be put at further and unnecessary risk. To find out how you can get involved and make your voice heard to #stopPMPRBnow, contact us at advocacy@pnhca.org or click here to take action!  

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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 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. We cannot accept that our lives are being put at risk by the uncertainty generated by the PMPRB reform process. Find out how you can help protect the lives of Canadians living with PNH and other rare diseases! On September 30, 2020 at 12:00 p.m. EDT, please join the Canadian Association of PNH Patients and our presenters, Barry Katsof, Founder & President, Canadian Association of PNH…

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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 in response to the consultation currently underway regarding proposed amendments to the Regulations governing the 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. On September 10, 2020 at 12:00 p.m. EDT, please join the Canadian Association of PNH Patients and our presenters, Barry Katsof, Founder & President, Canadian Association of PNH Patients and Joanne Koskie, Managing Director, Advocacy Solutions for a free…

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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.

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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 to and from infusion clinics during this unprecedented time. Details about this program: The OneSource program is now offering travel assistance should a patient indicate that they regularly take public transit to and from their infusion clinic appointments. Patients will choose and book their own car service to and from their appointments. Alexion recommends using Uber, Talixo or Lyft as these companies have implemented strict policies around car cleaning in light of COVID-19. Lyft (Only available to residents in ON and BC) Website: https://www.lyft.com/rider How to use this service: https://help.lyft.com/hc/en-ca/articles/115013079988-How-to-request-a-ride Uber Website: https://www.uber.com/ca/en/ How to…

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New Clinical Trial!

BioCryst Pharmaceuticals is recruiting for a first-in-human study of its novel oral therapy for PNH! BCX9930 is a novel, oral Factor D inhibitor currently in Phase 1 clinical development for the treatment of complement-mediated diseases, including PNH. This three-part study will evaluate the safety, tolerability, pharmacokinetics and pharmacodynamics of BCX9930 with single and multiple ascending doses. BioCryst Pharmaceuticals is currently recruiting both healthy subjects and those with PNH to enroll in the 148-participant study. Clinical trial sites for this study are currently located in South Africa. For more information on this clinical trial, visit ClinicalTrials.gov https://clinicaltrials.gov/ct2/show/NCT04330534… For more information about BioCryst Pharmaceuticals’ Complement Program visit: https://www.biocryst.com/our-program/complement-program/

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COVID-19 for PNH Patients – Update #2

The complete webinar series from Aplastic Anemia & MDS International Foundation regarding COVID-19 is now available to view. While all the webinars contain important information regarding COVID-19, we recommend watching the second webinar as it is focused on patients with PNH and aplastic anemia. Here are the links to the most relevant videos in this series:  Webinar 1Guidance for Bone Marrow Failure Patients to Protect Against Coronavirus (COVID-19)https://www.youtube.com/watch?v=apMyOo7YSeA Webinar 2COVID-19 Update – Focus on Aplastic Anemia and PNHhttps://www.youtube.com/watch?v=I4-KkCyGLGs Webinar 3COVID-19 Update: Pediatric Bone Marrow Failure Patientshttps://www.youtube.com/watch?v=gVgy5-eijC4 Webinar 4COVID-19 Update: Bone Marrow Failure and Infectious Diseaseshttps://www.youtube.com/watch?v=wg4fLuXhyL8 For Aplastic Anemia & MDS International Foundation’s commentary and further information about COVID-19, please visit: https://www.aamds.org/education/covid-19 For regularly updated information on COVID-19 from the Public Health Agency of Canada, please visit: https://www.canada.ca/…/d…/coronavirus-disease-covid-19.html Please follow us on Facebook to stay connected with PNH news.

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COVID-19 for PNH Patients – Update #1

PNH Patients,  Aplastic Anemia & MDS International Foundation has released a webinar for PNH patients regarding COVID-19.  You can watch the free webinar by following this link: https://youtu.be/apMyOo7YSeA For regularly updated information on COVID-19 from the Public Health Agency of Canada, please visit: https://www.canada.ca/…/d…/coronavirus-disease-covid-19.html  

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#FIGHTforourLIVES

Canadian lives depend on access to new medicines. Join the #FightForOurLives movement now and make sure the voice of the PNH community is heard! Visit the CORD website for instructions on how you can get involved in this patient movement. For more information click here You can participate in both official languages – take action and help get the attention of key decision makers around this important issue!  

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