As everyone knows, TreatSMA along with other patient advocacy groups attended and contributed to an important meeting for Spinraza appraisal at NICE HQ in Manchester on the 27th June.
We would like to thank all those in the community that filled out questionnaires and for providing some hard hitting quotes which were used during the meeting. The committee at NICE said they have NEVER had so many substantial submissions. Ever! As a direct result they took the unusal steps of meeting nominated patient experts and selected patient experts prior to the Appraisal. This HAS NEVER HAPPENED BEFORE.
The public gallery was also oversubscibed.
There were three members that were nominated patient experts from TreatSMA out of the six that attended. One member was chosen and spoke on the day.
If you remember, we have collected many photographs of children and adults waiting for Spinraza. These were printed into a book. Copies of the book were handed to the chair and members of the appraisal committee in order to ensure that these are not faceless statistics, but real humans with real lives.
Thank you to all who attended and all the clinical and patient experts who did their best to make meaningful contribution in short time given to them.
