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Updated: Aug 4, 2023

Hi everyone,

Hope your all well

So today after many years of research the SMA community hit a huge milestone. In December 2016, Spinraza became the first approved drug used in treating Spinal Muscular Atrophy, it was first used in America. After this many other countries were approved to have the drug, England was one of countries that was denied access due to the price of £66,000 per treatment. As you can imagine this angered myself and many others because they were putting a price on people's lives. Treat SMA along with many other charities helped to campaign against this decision, they met with National Institute for Health and Care Excellence (NICE) but they just argued about the price and apparently their wasn't enough long term evidence and data. I feel if the government wasn't wasting the tax payers money on rubbish they could help provide life changing treatments sooner. They had arranged their next meeting to be on May 15th 2019 which was today and I am delighted to say treat SMA and the other charities WON AND IT IS NOW AVAILABLE IN ENGLAND FOR EVERYONE!!! It has been a very long journey but I want to thank everyone involved in making this dream become true. Today was a very emotional day for myself and the whole SMA community.

Spinraza is treatment which helps people with types 1,2 and 3 it is administered directly to the central nervous system through lumbar puction via an injection into the spinal cavity. SMA is a rare and often fatal genetic disease affecting muscle strength and movement but Spinraza helps to maintain strength and stops the deterioration. The daily things everybody does naturally could be as simple as brushing your own hair and doing your own makeup but for me to be able to do this would be such a huge achivement for me and could be made possible with Spinraza.

Now I have to wait for my opportunity to receive the treatment, my mum has been in contact with my hospital so I can hopefully get it soon.

I hope i was able to expand your knowledge of my condition and what is happening. I will keep you up to date with my journey as it happens.

Thank you for reading

Ellie X

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