The NHS could be banning a vital drug that would be devastating for around a 1,000 people with a rare disease called spinal muscular atrophy (SMA).
The National Institute for Health and Care Excellence (NICE), which provides guidance and advice to improve health and social care, has drafted the suggestion that the Spinraza drug should not be used on the NHS for cost and other reasons.
The manufacturer of Spinraza has announced that special compassionate access will be closed to new patients from the start of November.
Without treatment those that suffer from this rare disease are unlikely to see their second birthday. However, if patients are given Spinraza this means some have progressed to crawl and even walk.
The chairman of the All Party Group on Muscular Dystrophy, “I know that this is extremely upsetting news for the families affected and I am working urgently with the Muscular Dystrophy UK charity to push for this vital treatment to be allowed in NHS treatment.”
The final decision from NICE is to be expected in November, or early in 2019.
The Chairman explains that when Parliament returns next week his plan is to put forward all concerns raised with regards to the Spinraza case.
Mr. Anderson said, “I will chair an emergency meeting with MPs, NHS England, the manufacturer and NICE and enable parents and carers to share their personal stories of life with SMA with MPs. I will also urge the Prime Minister to meet me and others to find suitable solutions to afford these children the best chance of life.”