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2 weeks ago

www.thestar.com/sponsored_sections/2018/06/29/susis-story-one-mothers-fight-for-access.html ...

Susi's story: One mother's fight for access to lifesaving treatment | The Star

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Cure SMA Canada

2 weeks ago

www.cbc.ca/news/canada/manitoba/spinal-muscular-atrophy-march-1.4726843 ...

Advocates march to health ministers meeting to demand coverage for new treatment for rare spinal disease | CBC News

cbc.ca

Families and advocates for patients with a rare degenerative disease marched through downtown Winnipeg to the hotel where federal and provincial health ministers have gathered, demanding coverage for a new treatment that costs hundreds of thousands of dollars every year.

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Cure SMA Canada

3 weeks ago

Community update - Biogen Resubmits Application
Dear Cure SMA Canada Community,

We'd like to bring you up to date on some developments of the Spinraza approval process here in Canada.

Due to the lack of compatible agreement between Biogen and the pCPA/provincial governments, Biogen has resubmitted their application with CADTH. This resubmission was necessary because of the need for the provinces to adhere to the drug approval process. Because of the very narrow recommendation from CADTH from the first submission, it put the provinces/pCPA in a position where they would have to override that recommendation or approve the very narrow margin of patients.

We have made a strong impact on the decision makers, we are very sure that the re-submission will result in a broader recommendation from CADTH. And we feel hopeful and confident that the approval process will move more timely than the previous application.

Our ask:
That Canada covers the treatment our most severe patients, the type 1, immediately.
That Biogen offers a wider scope of treatment to patients in their EAP, including type 2 and 3 patients, effective immediately.
That CADTH expedites the recommendation process and returns with a favorable response that encompasses our type 1,2 and 3 patients.

Cure SMA Canada will continue to advocate for the access to treatment for all of our patients. We will continue to support CORD (Canadian Organization for Rare Diseases) to press the Canadian government to implement a Rare Disease Strategy so patients do not have to sit and wait for a life saving and life changing treatment. It is unacceptable that the SMA community has been left waiting, our patients progressing, watching other countries gain access.

Oh Canada!

Cure SMA Canada will be providing patient input on Biogen's new submission. We will be informing you, the community, of the support and input we will need from you to support this submission.

Thank you for your continued support, together we will get what we've all been waiting and hoping for. We must remain vigil and we will!

Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada

Please see below for Biogen's Community Statement

Biogen's Community Statement
Dear Members of the SMA Community

In response to your requests for information, please see below a brief update on the progress towards bringing SPINRAZA (nusinersen) to Canadian patients affected by Spinal Muscular Atrophy (SMA).

On June 29, 2017, Health Canada approved SPINRAZA as the first treatment for SMA. Six months later, in December 2017, recommendations for the public reimbursement of SPINRAZA were released by the Canadian Association of Drugs and Technology in Health (CADTH) and Quebec’s Institut national d'excellence en santé et en services sociaux (INESSS). Although positively reviewed and recommended for a small subset of type 1 patients, these recommendations greatly limit access to care for the population of patients that could benefit from SPINRAZA.

Since the CADTH and INESSS recommendations, Biogen Canada has been involved in discussions with the pan-Canadian Pharmaceutical Alliance (pCPA) aimed at ensuring that patients with SMA have access to SPINRAZA. In support of this goal, Biogen has agreed to re-submit to CADTH and INESSS – requesting reimbursement for 5q SMA in presymptomatic patients and patients with types 1, 2 and 3. The pCPA is actively engaged with Biogen, with the intent to come to an agreement as soon as possible.

Biogen urges CADTH/INESSS to consider ALL of the SPINRAZA data, from both placebo-controlled and open label studies, so as to reach a similar decision as most health authorities around the world that currently recommend SPINRAZA and have agreed to fund its clinical value for a broad population of patients. Thirty seven (37) countries are now funding SPINRAZA based on the same data as that submitted in Canada.

The faster this new review concludes, the sooner Canadian patients will have hope against deterioration from SMA.

Biogen's commitment to the SMA community remains steadfast. There is still much work to do and Biogen will continue to work tirelessly to ensure that all patients who may benefit from Spinraza will receive access as quickly as possible in Canada. We remain committed to transparent and timely communications and will continue to be available to provide any requested updates.

Marina Vasiliou
Managing Director Biogen Canada ...

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Cure SMA Canada shared Cure SMA Canada - Fighting for Treatment's post.

4 weeks ago

Tick Tock, Tick Tock, Tick Tock...
The days turn to weeks, turn to months and a year as the SMA Community continues to wait for access to treatment.

It seems to be the most incredible journey we have all traveled, and where are we now? How is it possible that we have not heard a positive answer from our beloved Canada yet?

Cure SMA Canada has traveled from one end of this country to the other, several times over, spouting our community's message, impressing on our patient's need for access to treatment. We've held the hands of our elected and non elected officials, we've had corridor meetings, we've publicly demanded, we've brought in physicians, families, shared stories, held petitions, held many gatherings and speeches, wrote endless letters and emails. We've shared very personal feelings, we've literally exhausted ourselves with the many attempts to be heard, understood and supported by our government.

What does it take? We've progressed waiting for the treatment, we've lost lives waiting for it. SMA is a life threatening, progressive disease with NO OTHER treatment options. This is a public out cry, we are on our knees now. This fight has brought the SMA community to our knees. We are in stunned devastated shock that our needs have not brought an answer for us yet. We've seen other countries announce, one after the other that they have approved Spinraza. What about Canada? Our Canada? Our heads are hung in shame, our patients progress and we wonder, what is the value of our life to our country?

Canada has not said yes yet, still we wait, still be fight, we haven't given up and if this disease has taught us anything, it is how strong we are as a family, a cross Canada family of people that have all heard the same devastating news of diagnoses, have a daily shot of reality of what this disease steals from us and have had to exercise the deepest patience as we wait for a response from our government. When will we be able to start accessing this proven safe and effective treatment? We call on Canada to step up and save the Spinal Muscular Atrophy patients! A disease where every single day matters should not be forced to wait to access treatment, especially in Canada.

Please join Cure SMA Canada and CORD as we meet in Winnipeg on June 28, 2018, to share with Canada what we are waiting for. We will march together with our voices united. We will continue our quest to bring change, to impact the future of SMA in Canada!

Look us in the eyes and feel what we feel...if only for a fleeting moment, feel our fear, our shock, our devastation and desperation. Do the right thing, Canada. Approve Spinraza for all patients!

Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada ...

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Cure SMA Canada

2 months ago

Dear Cure SMA Canada members,
We are providing you with a link to an SMA community statement from Roche about their Olesoxime study.

This is unfortunate news, as many of us were hoping and waiting for this product to come available after the clinical trials were completed.

We will continue to work hard towards supporting research in our fight to find treatments for SMA. Together, we will succeed in our goals.

Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada ...

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