Pharmac seeking feedback on nusinersen and adrenaline auto-injectors funding

Te Pātaka Whaioranga - Pharmac has initiated two consultations today, seeking feedback on the funding of two different medicines that we've heard are very important to many New Zealanders. One is for funding nusinersen (branded as Spinraza) for people with the rare genetic disorder spinal muscular atrophy, and the other is for funding adrenaline auto-injectors for people at risk of anaphylaxis.

“Following our budget increase in May 2022 we are working our way through our options for investment list,” says Pharmac’s director of operations Lisa Williams, “We are really pleased to be in a position to progress the funding of these two treatments, alongside many more.”

Nusinersen (branded as Spinraza)

“Nusinersen has the potential to make a substantial difference to the lives of young people in New Zealand living with spinal muscular atrophy and for their whānau and support networks too,” says Ms Williams. “This would be the first medicine that is publicly funded for those in New Zealand living with this condition.”

Pharmac has reached a provisional agreement with medicine supplier Biogen to fund nusinersen for people with spinal muscular atrophy.

“We have been actively working towards this step in the funding process since receiving positive recommendations for funding(external link) nusinersen from both our Rare Disorders Advisory Committee and the Pharmacology and Therapeutics Advisory Committee. The evidence is clear that nusinersen can benefit people with spinal muscular atrophy, so we are pleased to have reached an agreement with Biogen.

“I want to acknowledge the time that many people have put into advocating for those living with spinal muscular atrophy and to those who have shared their own very personal stories with us. I am very heartened share the news that we are proposing to fund a treatment,” says Ms Williams.

We are welcoming feedback on the proposed funding of nusinersen until Monday 24 October 2022. If approved, funding would start from 1 January 2023.

Adrenaline auto-injectors

Pharmac is also considering, in a separate consultation, funding adrenaline auto-injectors, for anyone who has had a previous anaphylaxis reaction or is deemed to be at significant risk of anaphylaxis.

“We estimate 12,000 people would be able to access funded adrenaline auto-injectors in the first year of funding, increasing to 17,000 people per year after five years,” says Ms Williams.

“We received an application to fund adrenaline auto-injectors in 1997, making it one of the longest held applications,” says Ms Williams. “Pharmac has re-assessed the funding application on a number of occasions. Today, with updated clinical advice and a competitive pricing offer, combined with our recent budget increase, we are in a position to fund adrenaline auto-injectors. We have heard from advocacy groups and clinical experts that the funding of adrenaline auto-injectors would positively impact on the quality of life for individuals, their caregivers and whānau.”

“We included adrenaline auto-injectors in Pharmac’s 2021/22 Annual Invitation to Tender, which is where we run an open and fair procurement process. As the tender process is still in progress, the brand name, pricing and timing for this change are still to be determined. What we are seeking feedback on, at this time, are the proposed access criteria for adrenaline auto-injectors,” explains Ms Williams.

Feedback on the proposed funding adrenaline auto-injectors is due by Tuesday 11 October 2022.

Both consultations are available on the Pharmac website for anyone wanting to have their say. “Consultation is a very important step in our process,” says Ms Williams. “It’s how we check that the people who will get the most benefit from the medicines will be able to access them. If approved, we will also be working closely with our colleagues across the health sector to plan for the implementation of nusinersen and adrenaline auto-injectors