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PHARMAC seeking views on new cystic fibrosis medicine

PHARMAC has reached a provisional agreement with medicine supplier Vertex to fund ivacaftor (marketed as Kalydeco) for people with cystic fibrosis.

“We have been working towards this since receiving positive recommendations for funding from our clinical advisory committees,” says PHARMAC’s Chief Executive Sarah Fitt “and we are delighted to announce today that we’ve been able to reach an agreement with the supplier Vertex.”

Cystic fibrosis is an inherited life-threatening rare disorder that damages the lungs and digestive system. Ivacaftor is being considered for funding to treat those with the G551D mutation of cystic fibrosis. It will treat the disease rather than the symptoms of the disease.

PHARMAC is proposing the funding will have no restrictions on age. Children under the age of six can have the oral formulation via Section 29 until the formulation is registered by Medsafe.

“This medicine has the potential to make a real difference to the lives of the estimated 30 adults and children in New Zealand living with cystic fibrosis that have this particular mutation and their carers,” says Ms Fitt.

An application for ivacaftor was initially put to PHARMAC back in 2014, but at the time there was limited evidence of the benefit of the medicine. New evidence was presented to our clinical experts in 2018 and 2019 and they recommended it be funded and since then we have been working closely with the supplier to reach an agreement to fund ivacaftor.

Consultation has gone out today to health professionals and is available on PHARMAC’s website for anyone wanting to have their say about the proposal to fund ivacaftor. If the feedback from the consultation is supportive and the proposal is approved, then people could be prescribed ivacaftor from 1 March this year.

“I want to particularly acknowledge the work that the Cystic Fibrosis New Zealand and Kalydeco for Kiwis do to support those living with cystic fibrosis. We have been working closely with these groups and were very pleased to be able to share the news with them.

“PHARMAC is committed to continuing our work to fund more medicines for rare disorders and delivering the best possible health outcomes for New Zealanders,” concludes Ms Fitt.

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