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News | Published May 15 2019

Spinraza: Lyn Brown MP says access should be "immediate"

NICE has announced that Spinraza will be available on the NHS after much negotiation and campaigning.

The drug Spinraza is used to treat spinal muscular atrophy and was deemed non-cost-effective last August.

As of today, an agreement was reached between NHS England and Biogen at a more satisfactory price.

The exact price has not been made public, but it was sufficient to reverse last year's decision by NICE.

Many regard this as a long time coming, including Lyn Brown MP who has campaigned on this issue and raised it in parliament.

We asked her what she made of today's news, and she said: "Months of campaigning by parents, local councillors, Imams, Bishops, and my fellow MPs has finally paid off.

"It has taken far too long, but beautiful nine-month-old Maryam and other babies will be able to access treatment for SMA on the NHS.

"I’m going to keep pushing to ensure that access is rolled out immediately to all the families who need it.

"It’s clear from our experience on this campaign that procedures for approving funding for devastating rare diseases like SMA aren’t working well.

"We need rapid progress on Kuvan, Orkambi and more. For families to have to wait so long while their children’s health deteriorates is simply cruel.

"I’m overjoyed that this decision has finally been taken, but there is still work to do."

Authored by

Thomas Wilson
Political Editor
@theparlreview
May 15 2019

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