Saturday, 13 December 2014

Update on the KeepSamSmiling Campaign

Sam Brown age 6 has Morquio Syndrome. He was Harry's class mate.
The update is that following the threat of legal action, opposing the scorecard for funding new drugs for rare diseases, it has been scrapped. great, but in the meantime there is no system in place to grant funding for new drugs for rare diseases. Currently the drug company are continuing to fund Vimizim for Sam, which he has infused weekly to keep his life limiting disease stable, but how long the funding will continue is unknown. The Government need to act fast to have a system in place, which can grant funding for the drug Vimizim and ensure Sam doesn't have a gap in treatment. Any gap will mean the disease is set free again to progress, any progression is irreversible. To ensure that Sam has the possibility of a future into adulthood and one where he can be as active physically as possible, the government need to act fast and say yes to funding Vimizim. 
The #KeepSamSmiling campaign has gained momentum and Sam's parents have been to London this week for a meeting with MPs re highlighting how urgent decisions need to be made. They have another meeting next week in London with The department of health. Fingers crossed a difference can be made. 

Words from Sam's mum Katy:
We've secured a meeting next week with the Dept of Health, NHS England and the drug companies with the aim of achieving an interim solution for children and adults to receive Vimizim until a new process is established by NHS England. An important first step but still no commitment, for the short term or the long term. Please keep sharing and liking - we really need your help to keep raising awareness and get this issue firmly on the national agenda xx

How you can HELP from Katy Brown: 
Quite a few people have been asking me what they can do to help. So - now I have something!! Please could everyone send an email to David Cameron using the following simple form .... Mentioning Morquio (Sam's condition), Vimizim (the drug) and Keep Sam Smiling. It is critical he knows how many people are fighting for Sam and other Morquio sufferers to continue (or in some cases start) to receive life changing treatment, funded by the NHS right now!!

Thank you all, you're amazing xx

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