Dear Cure SMA Canada Community and supporters,
Thank you for your continued vigilance in our many efforts for fighting for access to treatment. Cure SMA Canada has been working hard to have the concerns of the SMA community heard by people that are in the driver’s seat of the decision making process.
What we’ve been doing:
- Meeting has been held with Imran Ali, Senior Manager of the pan-Canadian Pharmaceutical Alliance (pCPA). Several of Mr. Ali’s colleagues joined the meeting held with Cure SMA Canada’s Susi Vander Wyk, also attended by Dr. Dowling of Toronto Sick Kids and Peter Kelly, grandfather of Morgan Rideout who has type 2 SMA. Discussion was to share the SMA community’s concerns of lack of access to treatment for all types of SMA, the lack of acknowledgment of the data from the Cherish trial in the recommendations from CADTH, and the request for overriding those recommendations due to these completely unethical findings. Our grave concern is that negotiations are held, including only the small subset group of type 1 children. We expressed the importance for all SMA patients to access treatment, both medically and ethically . A follow up meeting will be held with Cure SMA Canada, Mr. Ali and his team.
- Cure SMA Canada families joined the Canadian Organization for Rare Diseases on Rare Disease Day at the Ontario Legislature. Cure SMA Canada had a brief introductory meeting with Ontario’s new Minister of Health, Helena Jaczek. We were able to impress upon her the concerns of the SMA community and have since had follow up communications with her office.
- Cure SMA Canada’s executive director, Susi Vander Wyk and BC Chapter president, Anne Belanger held a meeting with BC Children’s Hospital’s president and COO to discuss what appeared to be a disruption of access to treatment. This appears to be resolved with commitment to ensuring timely access in the future.
- The petition stating the need for access to treatment for all Canadians affected by SMA was initiated 2 weeks ago and presently has over 36,000 signatures. We encourage continued circulation to raise this number even more yet! Thank you for sharing and signing!
- Cure SMA Canada has been requesting funds for SMA camp and we are VERY pleased to announce that these funds have now been promised! We are very excited to announce that SMA camp will happen this year and will be funded!! Please contact Cure SMA Canada if you are interested in attending, we can put you in contact with the camp directors in your area.
- Communication with various government officials, health industry and drug companies and CORD have been held to discuss access to treatment.
- SMA legislature day in BC and Alberta are being organized, more info to come soon.
- Patient’s Day on Parliament Hill will be held on March 20, 2018. A bus is going to be travelling from Montreal to Ottawa, carrying SMA families and supporters on March 20 where the group will join more SMA families and supporters from Ontario and other provinces as we join CORD and all march together to Parliament Hill. Media will be present, meetings will be held with MPPs, the question and answer period will be attended. The SMA group will have shirts bearing the Cure SMA Canada logo and #SPINRAZA4ALL. If you would like to join us, please contact Susi Vander Wyk at curesma@telus.net to register and so we can ensure a tshirt will be available for you. Thank you to Aniello Cavallaro, Jenna Stewart and CORD for assisting to organize the SMA community’s participation for this event.
WHAT YOU CAN DO RIGHT NOW!!!
Please send a letter to your local MPP immediately with this information.Even if you have already written your MPP, please write again, with this content.
(Introduce yourself and how you or your child or other are affected by SMA) (keep short)
The Spinal Muscular Atrophy (SMA) community has been devastated by our inability to access the only treatment that has ever been available for this life limiting, progressive disease.
SMA is the number one genetic killer of children under the age of 2, however, it is progressive for all types, and life limiting. SMA does not affect its victims intellectually, but physically they grow weaker over time as the nerve cells die. SMA is a rare disease where 1 in 6,000 births are affected, most of those will be diagnosed with type 1, the most severe form. With SMA, every day counts, every day without treatment represents loss of ability and loss of life.
The SMA community received wonderful news last year that Health Canada approved the very first treatment for SMA. The treatment is called Spinraza. However the next level of the approval process failed us to devastation. CADTH only recommended reimbursement for a very small subset of the type 1 babies and INESSS denied funding entirely. There has been a very serious dismissal from CADTH of strong clinical data from the Cherish trial, which is now published, to justify access to treatment for stronger types of SMA.
The clinical trial data results and real life experiences of the families that are accessing through private insurance or were involved in the clinical trials are amazing. Children that couldn’t walk are able to ride a bike, children that could only lay stationary are able to roll over and sit on their own. Spinraza is on the active negotiation list, however if they only negotiate for the ones approved, very few Canadians affected by SMA will be able to access the only treatment that has ever been available for SMA.
A petition is being circulated and at present has over 36,000 signatures in just 2 weeks, in support of broad access to Spinraza. These numbers can’t be ignored!! https://www.change.org/p/funding-of-spinraza-for-all-canadian-patients-affected-by-spinal-muscular-atrophy-sma
My appeal to you is to request your help to be heard by government. Lives depend on these negotiations to include all patients affected by Spinal Muscular Atrophy in Canada. 15 other countries have approved broad access with the very same data. There is no developed nation that has devastated their SMA community like Canada has.
Thank you for your gift of assistance with your position. We hope you are able to provide influence and support in our quest for treatment.
Please present these questions in the house in your next question and answer period.
- Why does it take so long to get a breakthrough treatment, like Spinraza funded for a rare disease in Canada – young infants and children with SMA are waiting to get the only treatment available in Canada that could save their lives
- Why do the Provinces not have an interim system which allows funding for a drug like Spinraza for SMA where patients are progressing and dying while provinces decide on whether to fund these drugs or not?
- Why is Canada lagging behind 22 other Countries to fund Spinraza that will save patients with SMA?
(thank them personally and sign with contact info) (feel free to include a picture)
Thank you all for your continued dedication to moving the SMA community’s concerns into the front line view of our government, the media and the public! Keep up the great work!!
Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada
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