The 6th March will be the decisive time. A NICE committee will meet to decide on the fate of the hundreds of children and adults with SMA in England, Wales and Northern Ireland. Their decision will mean life or death.
On this day TreatSMA has called a vigil to be held in front of NICE office in Manchester. While TreatSMA maintains a regular dialogue with NICE, we think it is only right and fair to make the voice of hundreds of SMA families heard loud and clear. We need to use all ways possible to make the decision makers fully understand the consequences of their decisions.
All the UK SMA Families, their friends and supporters are warmly welcome to attend the 6th March protest (you can find practical information here).
The protest will be held in accordance with the law. We want to exercise our citizens’ rights to hold a peaceful protest. TreatSMA has duly notified the police about place and time, and uniformed police officers will be present during the vigil.
Herein, all participants are asked to comply with the following rules:
- This is a peaceful protest in which there is no room for harassment, aggression or vandalism.
- Be polite to passers-by, explain to them patiently but succintly what this is all about. You never know who they may later pass our message on. This is particularly important with regards to NICE personnel!
- This is an event to advocate for the entire SMA community, all of the 1,200+ SMA families in our country. You are most welcome to bring a banner or two with your child’s name or photo, or even better the child themselves, but please keep in mind and try to highlight the bigger picture and wider impact. NICE will not make a special decision just for your child!
- Absolutely no fundraising during the event. We are perfectly aware that many families are in dire financial need, but please refrain from collecting funds at this event. Families in need of support can please get in touch.
- Absolutely no politics during the event. While politicians are most welcome to participate and highlight the treatment issue, this is not a protest about party politics. The drug appraisal process is an administrative procedure established 20+ years ago (and largely unmodified since) that is largely immune to political influence. Yes, it is always right to denounce unfair government policies or the lack thereof, but expressing opinions or preferences related to individual political parties will be inappropriate.
- Absolutely no religious references. Performing religious service or making religious speeches in a public place without authorisation is illegal and will result in the protest being instantly closed down by the police. Also, TreatSMA is an inclusive community and strongly opposes imposing anyone’s religious beliefs on others. The only exception is with regard to images of those with SMA who have passed away, which can include religious symbols.
TreatSMA co-ordinators will be present and clearly identifiable on the site throughout the protest. They will lead and support. You can always approach them. Co-ordinators will also have powers to issue binding instructions, including requesting anyone to leave.
We are absolutely certain that every participating SMA Family will do their best to make the 6th March protest a success for everyone. We will stand united, we will show our determination, and we will make SMA treatment a reality in our country!
—Your relentless TreatSMA Team
