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AUTUMN 2023 InTouch | 3 Marion Moxham Pharmac proposes funding spinal muscular atrophy drug Risdiplam Consultation on a proposal to fund a new treatment for spinal muscular atrophy (SMA) is now underway. Risdiplam, taken orally once a day, can significantly improve the lives of young people with the disease and is well-tolerated over years of treatment, a long-running study has shown. Drug-buying agency Pharmac says it has already received clinical advice to fund it from internal committees, which said“it will make a significant difference to the lives of people with SMA”. Around one in 10,000 children are born with SMA, which – without treatment – progressively gets worse and is often fatal, particularly in infants and younger children. MDANZ currently has 72 members registered with SMA. In December 2022, Pharmac announced it would fund nusinersen, manufactured by US multinational Biogen and sold under the brand name Spinraza. Lisa Williams, Pharmac’s Director of Operations, said if the proposal for risdiplam was approved, patients here would have a choice between the two drugs. Some people in New Zealand are already taking risdiplam under compassionate access, Pharmac’s website said. Pharmac are asking for feedback on the proposed criteria that they are going to have in place and other aspects about the practical implementation of funding for this treatment. Denise Ganley, Member Services Manager, has written a submission to Pharmac on behalf of MDANZ. Risdiplam NEWS ROUNDUP At home again, up to 16 pigeons visit every day. Most are white, some black and white, and one bantam-red interspersed with pigeon-grey and sheen-pink-green: the red one on the day I had a RAT test. Everything will be all right. Next day I puzzle over my newly cleaned lounge windowwith muddy marks on it. Who did that? Until sun shines on it. An angel shape of open pigeon wings, their perfect mud print on the glass with curve of feathers, keel bone, claws, and beak. My mud angel window. Beneath are wings: alarm & longing (NZPS anthology) 2022 Cyclone Gabrielle community support package On Monday 13 February, the Government announced an $11.5 million Community Support Package to help those affected by the recent North Island floods, including support for regions preparing to respond to Cyclone Gabrielle. Community groups and contracted social sector providers including services for disabled people, have mobilised quickly to support people affected by the recent North Island floods and Cyclone Gabrielle. The increase in demand for this support is putting a strain on services and community-led initiatives. Support for disabled people ($0.5 million) This funding will support disabled people or their households to access support for immediate and unexpected needs due the recent North Island floods and Cyclone Gabrielle. The funding will be distributed through existing disability providers who identify people and households that need for support. Funding through this Community Support Package is time-limited and only available until 30 June 2023.