|Dear CORD Patient Advocates,
Many thanks to the patient advocates who joined us in Ottawa for the Economic Club of Canada PMPRB forum. It really felt like this was the first time we were able to get the patient point of view out there and to have everyone understand the HUGE risk these proposed guidelines on drug pricing will have on new medicines coming to Canada. For those who were unable to attend, you can view the recording of the panel discussion HERE.
You can also find the important information about the proposed guidelines and the impact on patient access to medicines in the attached fact sheet.
Our only hope to changing these proposed guidelines is the patient voice! We need you to join the “Fight For Our Lives.”
This is How.
1. Join the “Fight For Our Lives” Patient Movement
Are new medicines essential to your life, to the lives of those you love, and to the lives of all Canadian living with serious, chronic or rare diseases? (See here for more information.)
SPEAK UP! Share your story. Don’t let politicians and policy-makers hide behind their excuses, “we didn’t know; we weren’t aware; nobody told us”. That it would be so bad.
To add your voice, please do the following:
- Print the attached “Fight for our Lives” campaign image in colour if possible (use either English or French version attached)
- Take a photo of yourself holding the image
- Post the image to your personal Twitter, Facebook, Instagram and other accounts with either of the following text (English or French):
I’m joining #fightforourlives to ensure we get access to new medicines for _______ — without medicines ______ #cdnpoli #pmprb @PattyHajdu @JustinTrudeau
Je joins Le combat pour nos vies afin d’avoir accès aux nouveaux médicaments pour _______ — sans médicaments _______ #fightforourlives #cdnpoli #pmprb #cepmb @PattyHajdu @JustinTrudeau
Please fill in the blank with the name of a specific condition, type of disease (cancer) or category (rare disease). Then add your own statement about what would happen if you or someone you know or love no longer could not have access to medicines. It could be “I would be in the hospital” or “my son/daughter would lose ability to walk or breathe on his/her own ” or “I would have to give up working or living on my own.” Please add the hashtags (#fightforourlives #cdnpoli #pmprb) and the social media handles for the Health Minister (@PattyHajdu) and Prime Minister (@JustinTrudeau) in your post.
2. Share Your Story
We want to include patient stories on the “Fight For Our Lives website as well as in our submission to the PMPRB consultations on the new drug pricing guidelines.
If you are willing to have your story included, please send us your story in writing by February 12th, as the deadline for the PMPRB consultations is February 14th.
In writing your story, we’d appreciate if you could follow these parameters:
Your story should answer these 3 questions:
- What condition or disorder to you have?
- Why are medicines important to you?
- What will happen if you don’t have access to medicines?
Please keep your story as succinct as possible (e.g., no more than 250 words)
Also, we will be recording videos of patients’ stories at CORD’s conference on March 9-10th. Please let us know if you would be interested in recording a video capturing your story.
Thank you for your continued support!
President & CEO
Canadian Organization for Rare Disorders
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