| Thank you for participating in the #stopPMPRBnow campaign by emailing and tweeting to federal decision makers and sharing our campaign with your networks. For those who have not yet had a chance, we urge you to join us today and lend your voice to this important issue. Another impactful way to get the attention of federal decision makers is to share your personal story with your locally elected federal representative/Member of Parliament (MP). In addition to using the email letter tool (where your MP will be copied), please send a letter directly to your local MP 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. Simply copy and paste the text below and email it to your MP. Follow up with their office weekly until you get a response. Once you get a response, please forward it to advocacy@pnhca.org so we can keep track of our engagement. → To find your MP: click here and enter your postal code in the Search current and past members by name, constituency or postal code box located at the top of the page. Click the MP’s profile and select the Contact tab to find their email address. We have less than THREE months to make a difference on this important issue for our community – get involved today! |
| [Copy and Paste Below] Dear MP Last Name, I am writing as a Canadian who is extremely concerned about the proposed changes to the Regulations governing the Patented Medicine Prices Review Board (PMPRB) and the regulation of drug prices in Canada, set to come into force on January 1, 2021. Those living with rare diseases – including paroxysmal nocturnal hemoglobinuria (PNH), a debilitating and life-threatening bone marrow disease that affects the blood and major organs – cannot accept that lives continue to be put at risk by the uncertainty generated by the PMPRB reform process to date. INSERT A BRIEF PARAGRAPH OUTLINING YOUR PERSONAL STORY AND THE LINK YOU HAVE TO PNH – FOR EXAMPLE, HOW YOU/YOUR LOVED ONE/FAMILY HAS BEEN COPING WITH THE DISEASE SINCE BEING DIAGNOSED. We already know that PMPRB reform is 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. Without treatment, this life-threatening blood disorder has a death rate of more than 40% after five years, but there is still only one publicly funded treatment for PNH in Canada, which will not be the solution for everyone with this disease. The processes in place at the pan-Canadian and provincial/territorial levels to ensure cost savings on drugs are far from ideal given their protracted timelines, but at least they result in most treatments eventually reaching patients. PMPRB reform has significantly disrupted the fine balance between cost and effectiveness of publicly funded drugs, especially those for rare diseases. I believe any barriers to accessing new and existing treatment innovations in Canada must be removed. As clearly demonstrated in the recent Speech from the Throne, the federal government’s decision to prioritize price over patients when it comes to access to treatments is yet another significant barrier to overcome. That is why I am reaching out to you today. In order to allow the provinces and territories to continue delivering healthcare to all those living with rare diseases across the country, I am need your support 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. I appreciate your consideration of this request and look forward to a timely response with an expression of your willingness to support the PNH and rare diseases communities in this urgent matter. Your Name Your Full Mailing Address |