Sign our Petition for Funding of Spinraza for all Canadian patients affected by Spinal Muscular Atrophy (SMA)

Why is SMA so challenging?

Imagine a disease that destroys the motor neurons controlling the arms, legs, chest, face, throat and tongue. That’s SMA, or Spinal Muscular Atrophy.  About 1 in 6000 newborns are affected, and about 1 in 40 people carry the gene for SMA.  Only a   year ago, it was expected that a child, like Nina, born with severe SMA would never be able to sit or breathe on her own; she would most likely not survive beyond her second birthday.  Children, like Mark, with a less severe form might gradually lose his ability to walk and to use his hands…

Why do all Canadians need to sign this petition?

Funding is being negotiated by yet another government agency, the panCanadian Pharmaceutical Alliance (pCPA).

AND THIS IS THE TRAP.

If governments agreed to fund only those SMA patients recommended by the review agencies, INESSS and CADTH, only those infants who are most severely affected will get coverage.  And of course we do not want NO delay for these patients.  BUT if negotiations are concluded too hastily, we are at high risk of excluding all other SMA patients who could benefit from Spinraza. This is a situation that is equally abhorrent, probably unethical, and undoubtedly devastating for the SMA community.

Which is why Cure SMA Canada and the Canadian Organization for Rare Disorders are calling upon all Canadians to sign this petition, demanding governments include all SMA patients in the funding of Spinraza and to make the drug available immediately.