SHOULD ACCESS TO LIFE CHANGING MEDICAL DRUGS AND TREATMENTS BE DETERMINED BY YOUR POSTAL CODE?
How You Can Help
- Send a letter to your Government representation to highlight the inequitable treatment of SMA clients in Canada. We are asking our community to sign and send the following letter to: the Federal Minister of Health, Your Provincial Minister of Health and your Local MP or MPP.
- Sign our petition on Change.org
- Read our official statement on the CADTH recommendations
About Spinraza and SMA
SMA causes major problems with walking, muscle strength, fine motor skills, (deep) breathing, and swallowing or feeding. The inability to walk means relying on wheelchairs and other mobility aids and dealing with associated barriers. In more severe cases, patients cannot execute basic movements such as sitting up or feeding themselves.
Nusinersen, marketed as Spinraza, is a medication used in treating SMA. An “antisense” drug, Spinraza is designed to target genetic instructions at the RNA stage (an intermediate step between DNA and the protein manufacturing stage inside cells), resulting in increased production of the needed survival motor neuron (SMN) protein.
One parent described the treatment as a “miracle”. Demonstrated improvements include stronger breathing, speech, and coughing; increased physical strength, energy, and movement; ability to perform new actions such as holding one’s head up, rolling over, bearing weight on legs, raising arms and legs to and above the head, sitting or standing up with and without assistance, and using mobility aids.
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