Image Credit: Juliux | Manchester Town Hall
Protesters in Manchester have called on the National Institute of Health and Care Excellence (NICE), to overturn their rejection of the Spinal Muscular Atrophy (SMA) treatment Spinraza, after the public body chose not to approve the orphan drug for use on the NHS due “to uncertainties over its long-term effectiveness and its extremely high cost.”
Spinraza, which was approved by the European Medicines Agency (EMA) in May 2017 has a US list price of $125,000 per injection, which puts overall treatment cost at a total of $750,000. The drug, which is produced by American multinational Biogen is thus one of the most expensive pharmaceutical drugs in the world.
The high list price has deterred national healthcare authorities from adopting the therapy around the world with authorities in both Denmark and Norway having similarly refused to provide the treatment on their respective national healthcare systems with Norwegian authorities suggesting that the price was “unethically high”.
However a group of protestors have gathered outside of the NICE headquarters in the centre of Manchester calling for the treatment to be made available on the NHS.
In response a spokesperson for NICE commented:“We are actively engaging with Biogen both on the uncertainties our committee raised about the drug’s long-term effectiveness, and on what they can do to make the drug cost-effective for the NHS.”
As drug prices soar and resources have become particularly limited for the NHS, the problem NICE faces over Spinraza is likely to become increasingly common.
The healthcare institute continued in noting that: “The committee accepted that SMA is both rare and a very serious condition that can have a severe impact on people with it, as well as on family members and carers, and that there is an unmet need for effective treatments. NICE believes that our processes do have the flexibility to evaluate drugs for rare conditions and make them available on the NHS – for example, this year we have recommended dinutuximab for neuroblastoma, and cabozantinib for medullary thyroid cancer. But to do this, we also need flexibility on the part of the drug company.”