“We know that people with spinal muscular atrophy, their families and their wider community are wanting to know what stage this funding application is at”, says PHARMAC’s chief executive Sarah Fitt.

The Rare Disorders Subcommittee have recommended that nusinersen be funded with a high priority, for the treatment of children with spinal muscular atrophy, who are not yet showing symptoms. They also recommended nusinersen be funded with a medium priority for the treatment of symptomatic patients with type I, II, and IIIa spinal muscular atrophy.

The Subcommittee noted that the price proposed by the supplier is still very high, but that there is good quality evidence that treatment improves survival, reduces the risk of ventilation, and improves motor function.

The next step is to undertake an economic assessment, comparing funding of Spinraza against other medicines proposed for funding.

“A recommendation from one of our clinical committees is not a guarantee that PHARMAC will fund the medicine. We are continuing to work with the supplier of Spinraza on their funding application and will consider any further comment or information they provide.

“PHARMAC works to get the best health for New Zealanders we can, by funding medicines from within the available budget. Having a fixed budget means we need to make careful and considered funding choices in the interests of all New Zealanders.”

Since 2017/18, PHARMAC has funded over 100 medicines that helped more than 340 people with rare disorders.

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