NHS England has agreed to pay an undisclosed price for Biogen’s spinal muscle atrophy (SMA) treatment Spinraza.

England’s National Health Service said it had reached a ‘managed access agreement’ under which it will fund the treatment for a limited period of time, while collecting data on the drug’s effectiveness.

Spinraza, which is administered every four months via spinal injections, has a US list price of $750,000 for the first year and $375,000 for every year after.

Britain’s cost effectiveness body NICE said it could not recommend Spinraza in August 2018 after Biogen offered the drug at a price tag of £450,000 for the first year.

SMA is the leading genetic cause of infant mortality affecting one in every 10,000 live births. Around 60% of patients have the most severe form of the disease, Type 1, which can lead to paralysis, impaired breathing and death by the second birthday.

There are currently between 600 and 1,200 children and adults living with SMA in England and Wales. Spinraza will be made available to Type 1 SMA patients immediately.

Biogen’s drug will be made available to other SMA patients in the following weeks after NICE publishes guidance as to its use.

The decision comes as the US FDA are due to decide on approving Novartis’ one-time gene therapy Zolgensma, which could be a cure for SMA. However the one-off treatment is set to cost between $1.5 and $5 million a year.

Louis Goss

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