Evrysdi wins public funding OK for children with SMA in New Zealand

Approval means two treatments now available; Pharmac OK'd Spinraza last year

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Children and adolescents in New Zealand with spinal muscular atrophy (SMA) will be able to access Evrysdi (risdiplan) through the country’s publicly funded healthcare system, starting in May.

The decision by New Zealand’s Pharmaceutical Management Agency, known as Pharmac, means eligible patients will now have access to two treatment options through the program. The agency approved Biogen’s Spinraza (nusinersen) for patients 18 and younger last year, with coverage effective the beginning of 2023.

“We’re pleased to announce that we now have another treatment for people with spinal muscular atrophy,” Lisa Williams, Pharmac’s director of operations, said in an agency press release. “This means that there will be two funded options with the same access criteria for symptomatic and pre-symptomatic conditions, providing a choice for the person and their whānau [family] to determine the treatment best suited to them.”

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Why I’m crowdfunding for the SMA treatment Evrysdi

Evrysdi is an oral therapy that can be taken by mouth or with a feeding tube. It works to boost levels of SMN, the protein whose deficit causes SMA. It’s sold by Roche and its subsidiary Genentech.

“It’s great that young people with spinal muscular atrophy, their families and healthcare pracitioners will now have another choice for treatment, especially for those people who find it hard to travel to hospitals or prefer to have an oral, at-home solution,” said Alex Muelhaupt, general manager of Roche Products (New Zealand).

Williams said patients using Evrysdi will be able to pick it up at local collection points, such as community pharmacies or hospitals in the Te Whatu Ora (Health New Zealand) system.

“Making sure that there are easy ways to access treatment is incredibly important … The supplier, Roche, has supported the direct delivery of the treatment, which aims to improve the equity of access for those who are unable to travel to a specified location, usually in the cities,” Williams said.

Muelhaupt acknowledged the efforts of community advocates to generate awareness about SMA and the need for funding medicines like risdiplam. “Roche looks forward to ongoing collaboration with everyone who helped us arrive at this decision, and to continue to improve the lives of people living with the condition,” Muelhaupt said.

Current criteria cover only the two treatments for those 18 or younger when they start treatment. Pharmac said it’s “actively considering” expanding its criteria for adults following recommendations from an advisory committee meeting in March.