News | Published May 15 2019

Spinraza: Eleanor Smith MP says "permanent solution" needed

After NICE announced Spinraza's availability on the NHS, we decided to ask Eleanor Smith, a campaigner on this issue, made of the news.

The news came as a result of NHS England reaching a price agreement with Biogen, the manufacturer of Spinraza.

The drug is aimed at improving and saving the lives of those who suffer from muscular dystrophy, but access to it has been limited as a result of its high cost.

Last year, NICE said that, given the drug's price, it was not yet cost-effective to make it available on the NHS.

Spinraza's availability is conditional upon the results of data which is being currently collated.

On asking Eleanor Smith, MP for Wolverhampton South West, what she thought about today's news, she commented: "I am delighted that NICE has made the decision to make Spinraza available for treatments within the UK."

She has been advocating strongly for her constituent, Heidi, an 11-year-old girl with spinal muscular atrophy:

"This has been a long fight, not for MPs, but for the thousands of people in the UK living with spinal muscular atrophy, such as my constituent, Heidi Prescott. She is 11 years old and she was born with SMA."

"In the past seven months, Heidi’s condition has worsened, meaning that she now needs an urgent back operation."

"We can talk about how much better it would have been for Heidi to start treatment earlier in her life, but now Spinraza has been approved Heidi and her family can at least move forward with her treatment and address the deterioration of her body. She is a true fighter."

"This landmark decision has opened up the futures of so many people living with SMA, and I am truly grateful for it."

"That Spinraza was available in Scotland but not in the rest of the UK is just one of many inequities of our healthcare system."

"I am determined to carry on the push to make the prescriptions for working people with long-term illnesses free – this would include Spinraza."

"This decision has come about because NHS England came to an agreement with Spinraza's makers, Biogen, over costs."

"But treatment is only being funded for a limited time, allowing more data to be collected on its effectiveness. I will follow developments and expect to be pushing for a more permanent solution."

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Authored by

Thomas Wilson
Political Editor
May 15 2019

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