"Babies with this condition do not tend to live past 2 years"
- Details
- Published on Thursday, 07 February 2019 13:22
- Written by editor
PAOV — Maryam is 5 months old and her life is slipping away. She has spinal muscular atrophy (SMA), a disease that kills most babies within two years. A drug called Spinraza could greatly increase her chances of survival but the drugmaker, Biogen, has set an enormous price tag on the life-saving drug. Maryam's parents are asking for your help to save her life — you can join them in urging Biogen to make this drug accessible to Maryam and more children like her.
Petitioning Biogen Idec, NHS, National Institute, National Institute of Care and Excellence
Help those like my daughter access life-changing drug on the NHS
Petition by Shakil Malji
United Kingdom
237,854
Supporters
Sign now with a click
My name is Shakil and my wife and I have a beautiful five month old daughter named Maryam who has been diagnosed with Type 1 SMA (Spinal Muscular Atrophy). It causes progressive muscular weakness and loss of movement due to muscle wasting.It breaks our heart to see Maryam deteriorate. Babies with this condition do not tend to live past 2 years of age unless treated with specific drugs. One of these is called Spinraza - but it was not approved by the NHS - despite it showing great results and being available in Scotland.
Our son Abdullah who died at the age of 1 with the same disease was part of a trial by Biogen for a drug named Spinraza. This trial led to successful results and has been rolled to NHS Scotland but not to NHS England. Partly, this is due to the cost of the drug which Biogen set. That’s why I’m calling on Biogen, NICE and the NHS to work together to make this life-changing drug available to those in need.
This drug can help not just Maryam’s quality of life but many other children suffering from this rare disease in the UK.It would mean the world to us if you could sign this petition to help put pressure on those companies involved to get past any issues and provide this drug on the NHS and we appeal to Biogen and NICE in the name of Maryam and all the other innocent children that are suffering from this terrible disease to please come together to work for a solution to get this much needed drug on the NHS in England.
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