Thanks to some individual MPs and families within their constituencies raising the subject of access to Spinraza again in the commons, TreatSMA have met last week with those MPs to voice our concerns over the MAA for ineligible patients.
Mr Speaker grants an MP debate on spinal muscular atrophy.
MPs will meet on the 25th July for an adjournment debate to discuss options now that SMA individuals and families have been identified who are outside the MAA criteria. This debate, though not associated with a vote, may have important points raised and possible follow up actions. We ask you contact your MP now if you may in any way be excluded from the Spinraza MAA. TreatSMA are working with MPs to focus the debate on the need of those excluded by the current MAA.