Greens welcome life-saving treatments for rare disorders

The Green Party welcomes the news that Pharmac will fully fund Spinraza for people under the age of 18. 

“We are thrilled that Pharmac has decided to fund Spinraza for young people with spinal muscular atrophy, which follows the great news on Sunday that Pharmac has started consultation on its plan to fund Trikafta for people with cystic fibrosis,” says Greens Health spokesperson, Dr Elizabeth Kerekere.

“These medications will relieve suffering and extend the lives of many people who will no longer have to move overseas to get the treatment they need. Early diagnosis and treatment will make all the difference to those whānau.

“After sustained advocacy during the Pae Ora Bill by Rare Disorders and many others, we are very pleased that the Ministry of Health will now develop the country’s first Rare Disorders Strategy. 

“Earlier this year, the Health Select Committee heard the petition from Carmen Shanks to fund Trikafta and I also met with advocates for SMA. 

“We acknowledge their advocacy, along with Muscular Dystrophy Association of NZ, Cystic Fibrosis NZ and Patient Voice of Aotearoa which has led to this great result.

“Now, we need Pharmac to maintain momentum on funding reviews of medications so that people with other rare disorders and all forms of cancer can also benefit,” says Dr Elizabeth Kerekere. 

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