Pharmac have announced they will begin consultation on funding the potentially life-saving drug Spinraza, for the treatment of the rare genetic disorder spinal muscular atrophy in young people.
Nusinren, the drug branded as Spinraza, can halt symptoms of spinal muscular atrophy and in some cases reverse muscle deterioration.
Pharmac's director of operations Lisa Williams said: "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.
"The evidence is clear that nusinersen can benefit people with spinal muscular atrophy... 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."
And Health Minister Andrew Little welcomed the move, saying Spinraza will be the first medicine to be publicly funded for spinal muscular atrophy in Aotearoa if the funding goes ahead.
"It could make a substantial difference to the lives of the young people who receive it, and is in line with the recommendations of the Government-ordered review of Pharmac, which said more work should be done on funding medicines for people with rare disorders."
In New Zealand, around five children are born with spinal muscular atrophy a year. Almost half of them die before the age of 13 months.
The consultation process will run until October 24 and, if approved, funding for the drug would start from January 1 next year.
It's already funded in 56 other countries, including Australia.
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