Last Friday NHS England sent a disappointing response to our letter on access criteria to Spinraza under Expanded Access Programme.
Read the NHS response
Regretfully, Dr Palmer misses nearly all the points raised in our previous letter. The TreatSMA team will keep engaging with NHS England and pressing all and every single decisionmaker. We cannot and will not agree to absurd restrictions being placed by NHS England on access to the only lifesaving drug in SMA.
If you know anyone with type 1 SMA who has been denied access to Spinraza because of this disastrous NHS policy, please let us know as soon as possible.