Pharmac has approved funding for Spinraza (nusinersen), a treatment for young Kiwis living with the rare genetic disorder of spinal muscular atrophy (SMA).
It is the first medicine for SMA funded in New Zealand.
In its most severe forms, SMA can cause paralysis and difficulty breathing and swallowing, primarily affecting babies and children.
Paediatric patients aged 18 and under who have infantile or childhood onset spinal muscular atrophy and meet the criteria will receive the funded Spinraza drug.
"The option of a treatment allows families so much hope when they're dealing with the news of this devastating diagnosis," paediatric neurologist Dr Gina O'Grady said.
The treatment will be rolled out to an estimated 30 to 50 young people in the first year, beginning January 1, 2023.
Pharmac's director of operations Lisa Williams said the decision "will make a substantial difference to people's lives".
Health Minister Andrew Little said the announcement was great news, and hopes it will make a difference in the lives of many.
“Today’s announcement that Pharmac will fully fund Spinraza for people over the age of 18 is great news,” Health Minister Andrew Little said.
“Spinraza is the first medicine for spinal muscular atrophy to be funded, and has the potential to make a huge difference to the lives of the young people who receive it."
Additional funding announcements
Pharmac also announced it will fund meningococcal B vaccine Bexsero to protect more young people against the disease.
It said children aged up to 12 months and people aged 13 to 25 who are entering into or in their first year of specified close-living situations will now receive the vaccine.
The roll-out will occur in March 2023.
Pharmac also announced it will fund an oral version of vinorelbine, a chemotherapy medicine used to slow or stop the growth of cancer cells.
It will be funded and available from May 1, 2023.
"We heard from the consultation feedback that this is a more convenient treatment option and will have a positive impact for people and their whānau, particularly those who live further away from hospital," Williams said.
"This decision will allow these people to spend less time in hospital and spend more time with their whānau, doing activities they love."
“Being able to get vinorelbine as a capsule that you can take at home instead of having to travel to a hospital for intravenous chemotherapy will make life easier for hundreds of cancer patients,” Andrew Little said.
“Vinorelbine is used to treat lung and breast cancer, as well as some non-cancerous growths, so making it available as an oral treatment will be a real benefit to rural people especially, who often find it difficult to get to places where infusion services are delivered."
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