England’s NHS Reaches Agreement for Coverage with SMA Drug Manufacturer Biogen

According to a publication from Express Digest, Britain’s National Health Service (NHS) has finally reached an agreement with American biotechnology company Biogen Inc. over the price of Spinraza – a drug touted by some as a “wonder drug” for the treatment of spinal muscular atrophy (SMA).

The price tag on Spinraza has been a sticking point on negotiations between the pharmaceutical manufacturer and the healthcare systems of several countries; including Ireland, North Macedonia, and, previously, the United Kingdom.

About Spinal Muscular Atrophy

Spinal muscular atrophy is a genetically-inherited condition characterized by the progressive wasting of motor neurons in the spine. These neurons attach to large proximal muscles directly, stimulating movement. As the motor neurons of an SMA patient atrophy, control over major muscle groups weakens in turn.

Spinal muscular atrophy can occur at almost any age, and severity of the condition correlates strongly with age of onset. To increase specificity of a diagnosis, cases are differentiated into SMA types I-IV with increasing severity. Type I is present since birth and is the most severe, being fatal in most instances. Type IV is an adult-onset form of SMA and symptoms can be mild.

As many as one in 6,000 people could have some form of spinal muscular atrophy. SMA kills more children than any other genetic condition – and currently, Spinraza is the only effective treatment.

About Spinraza and the NHS

Spinraza is one of the most expensive medications in the world. Each injection of the drug runs a cool $125,000 – in the first year alone it can cost a patient between $625,000 and $750,000. For every year after that, three injections are administered – $375,000 annually.

Until now, the high cost has had some policymakers questioning the cost benefit of the drug. Officials in many countries were slow to negotiate, and even now most programs only cover some types of SMA.

England’s National Health Service spent a year-and-a-half negotiating with Biogen over coverage, and now, thanks to the efforts, between 600 and 1,200 people in England and Wales with spinal muscular atrophy will be eligible for the drug. Since estimates suggest that between 1,200 and 2,500 people in the UK have SMA, this coverage will only extend to about half of the affected citizens.

Nonetheless, this policy represents a major victory for many with the disease. One expert noted that for some children, Spinraza is a “silver bullet” that works when other treatments fail.


Do you think the expense of Spinraza makes it harder for policymakers to justify coverage? At what point does sticker price become a detractor from the efficacy of a drug? Share your thoughts with Patient Worthy!

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