MEDIA RELEASE - 20 August 2015

NZ’s Cystic Fibrosis community pays the price for lack of funding for new medicine

Cystic Fibrosis New Zealand is disappointed but not surprised to learn that the Government has rejected a bid by Pharmac for more money in this year’s budget.

As this week is Cystic Fibrosis Awareness Week, with the main collection day tomorrow (Friday 21 August), Cystic Fibrosis New Zealand felt compelled to issue a statement in response to the news that Government has rejected a bid by Pharmac to increase the medicine budget by $11 million and that it would only receive a $5 million top up.

In particular, CFNZ is concerned that the special funds for rare disorders is just $5 million despite lobbying by various rare disorder groups for a much higher budget.

The cost of new medicine is a major concern for the CF community in New Zealand, considering New Zealand has been left behind in the wake of a major advance in the treatment of cystic fibrosis.

Kalydeco, a medicine used to treat a specific genetic type of cystic fibrosis is being funded in other developed Commonwealth countries – UK, Ireland, Canada, and most recently Australia. It is not yet funded here, and Pharmac’s Pharmacology and Therapeutics Advisory Committee recently rejected a submission to fund it in New Zealand.

Chief Executive Belinda Burnett said it’s extremely disappointing that Kiwis with cystic fibrosis cannot get the same medicine as those across the Tasman.

“In New Zealand we do have access to medical care for cystic fibrosis. However, the reality is that New Zealanders with CF do not have access to world-class medical treatment similar to what is available in most developed Commonwealth countries,” Burnett says.

“The budget for rare disorders would have to be increased to $25 million at the very least to have any meaningful impact on the rare disorders community in New Zealand,” she concludes.

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