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Cure SMA Canada patient community rallied to bring attention to patient's fear of CADTH's recent recommendation for reimbursement of Spinraza. We are imploring the provincial health plans, the pCPA and Biogen to negotiate on behalf of all patients affected by Spinal Muscular Atrophy.
A press conference was held, followed by a march of protest where all were dressed in black to signify our mourning for the patients that are unable to access treatment, left without any other treatment options while living with a serious life limiting progressive disease.
A meeting was held with the pCPA office afterwards. ...

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Cure SMA Canada

3 weeks ago

Toronto Action Day!!!
March 13th, 2019

Be a part of front line advocacy, we need you and your friends to make a large impact!

On March 13, 2019, Cure SMA Canada will be holding a press conference at the Chelsea Hotel at 33 Gerrard St. West before we hold a demonstrative march which will take 10 minutes to 900 Bay St. where the pCPA office is. The pan Canadian Pharmaceutical Alliance actively negotiates on behalf of the provinces with the pharmaceutical company.
I have a meeting at 11:30am at the pCPA office in Toronto with a small group of patient representatives as well as physician will attend with me. This is our opportunity to be heard and seen! We want Spinraza for all patients!
We need as many people as possible to join us on that walk to the pCPA office as I will be alerting media to cover the story. Some of you have spoken to media lately, we need you to contact those reporters to invite them personally to the press conference and the march to the pCPA.

We will need as many people as possible to join us in the march to make the impact. Everyone dress in black from head to toe, call friends, family, neighbors, etc.

Please RSVP quickly as we have a very short time period to organize this event. To RSVP, please email curesma@telus.net with "I'm IN!"

Thank you,
Susi Vander Wyk\
Executive Director
Cure SMA Canada ...

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Cure SMA Canada

3 weeks ago

Sample letter for those who are going to write to their MLA's, MP's, your Provincial Health Ministers and Assistant Deputy Ministers. I encourage you to add a picture and personal comment on how the decision will affect you or your friend/loved one personally. Or minimally send just this letter with the necessary changes.

Thank you for helping to make an impact on the upcoming provincial decision!

Its important that you send these letters in the next week.

__________________________________________________

(Date)
Dear (insert name)

I’m sure you are already aware of the pressures that are being applied to the Spinal Muscular Atrophy (SMA) patient community in Canada. These are people attending school, university, volunteering in their communities, hold careers and have families. However, with SMA, the body becomes weaker and weaker, patients lose lung function and motor function, but it never affects their cognitive abilities, which is completely normal.

This serious, life limiting neuromuscular disease has never had the benefit of a treatment, until now. Biogen’s Spinraza (Nusinersen), has been developed and is the only treatment that has ever been proven effective and come to market for SMA. Spinraza was approved by Health Canada, however, the original recommendation from CADTH was only to approve treatment for a small subset of type 1 patients. After a resubmission and appeal by Biogen, CADTH has offered a broader coverage, however still only encompassing type 1 patients and type 2 patients up to the age of 12. This narrow selection of patients recommended for reimbursement is a devastating blow to the entire SMA community and its supporters. The remaining patients affected by SMA will steadily progress and eventually die from the disease.

Everybody should have the right to be all that they can be, to achieve career and personal goals, to have hopes, a future, an improved quality of life, as well as longevity. How can we as a country allow even one person to progress and die when there is a proven safe and effective treatment to halt the progression? This disease has always been considered a tragic diagnoses, but in Canada we are even more devastated that there is a treatment but are unable to access it. 45 countries and even the province of Quebec have approved broad access, why are we leaving our patients behind in the remaining provinces of Canada?? The same data was submitted to all of these countries, and now due to the delays within Canada, we have even more information available of the benefits of Spinraza for all ages and types. This overwhelming evidence can not be overlooked or dismissed!

We implore the provincial governments to approve reimbursement for all patients. Many of us have been waiting and hoping for many years for this day. We have a treatment now, it is an incredible injustice to not allow access for all patients immediately, especially when there are no other treatment options for SMA.

Make the right decision, the clock is ticking for our patients and for us it gets louder every day without treatment.
Help us change the outcome to one that saves lives!

Sincerely,

(your name)
(your contact info.) ...

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