Subject: MAV
SMA patients fight back!!
VANCOUVER, Jan. 21, 2020 /CNW/ - The BC health ministry announced that they are sentencing patients affected by Spinal Muscular Atrophy (SMA) to a life without ANY treatment, with no option but to progress, lose function and have no hope for a future of improved health. Simply because they live in BC rather than ANY other province.
SMA is a disease that robs its victims of physical function, losing their movement, ability to swallow and even breath over time. However, retaining all normal mental function. There has never been a treatment for this disease until 2 years ago when health Canada approved Spinraza for all patients, a proven safe and effective treatment that 10,000 patients world wide are receiving.
All provinces in Canada (only NL haven't rendered their decision) have approved this treatment for all patients up to the age of 18 (over the age of 18 can apply for approval)
BC announced a decision that devastated the SMA community, only patients up to the age of 12 that have never walked can access.
Cure SMA Canada is holding a press conference tomorrow!
On January 22, 2020 at 11:00
Holiday Inn
1110 Howe Street, Vancouver, British Columbia
Speakers:
- Susi Vander Wyk ?Cure SMA Canada and mother of a 23 year old daughter who cannot receive treatment
- Anne Belanger ? President of the BC Chapter and mother of 14 year old boy
- Vivienne Damantan ? mother of 4 year old girl who has received spinraza for one year through private insurance but coverage was only for one year. Now due to the criteria limitations of BC, (since she can walk) she will not receive treatment any longer and WILL end up in a wheelchair.
- Alex Carey ? Young man attending university, wanting treatment, scared of a future without
- Paige Gorham ? young lady who lives in the USA where she has been receiving Spinraza for 2 years. Married and with a child
- Leah Sidora ? mother of a 17 year old girl who recently lost function and as of this summer can no longer feed herself.
- 3 empty chairs for invitees from the BC health ministry, Adrian Dix Mitch Moneo, Eric Lun
- 1 empty chair draped in black to represent the patients we have lost to this tragic disease already.
SOURCE Cure SMA Canada
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