Today is the day that MPs debate Spinraza access. Please find information below as well as a press package that we would urge everybody to forward to their MPs or press contacts.
Today, MPs will meet at the Houses of Commons to debate access to Spinraza via the MAA and to discuss why, in the first instance we were told by NICE that it was for all, and then to also discuss why certain individuals and families will be ineligible under the current agreement.
TREATSMA have been lobbying MPs to have a system in place to provide treatment for those excluded by the MAA. Also, to investigate a rare disease fund to stop this type of crisis, like for cancer drugs, funds need to be allocated for rare diseases like spinal muscular atrophy.
Please click here for your copy of the press package.