Pharmac funds first rare disorder medicine

People with the potentially life-threatening blood condition hereditary angioedema (HAE) will be the first to benefit from Pharmac’s decision to fund medicines for rare disorders.

Pharmac has announced the first medicine it will fund under its new competitive process will be Icatibant (Firazyr), which treats HAE.

The genetic condition causes episodes of swelling that can be life-threatening, and there were up to 90 patients with the condition in New Zealand.

Pharmac hopes to make more funding decisions in the coming months.
Petr Malinak 123RF
Pharmac hopes to make more funding decisions in the coming months.

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In 2014 Pharmac identified up to $25 million available over five years, and sought proposals from companies supplying medicines for rare disorders.

Chief executive Steffan Crausaz said Pharmac had received proposals for 28 medicines, many previously not seen in New Zealand before.

“We’re intending this to be the first of several medicines that will be affordable within the $25 million we have identified as available for rare disorders medicines.

“This is a great outcome for people with hereditary angioedema, and we’re confident of more agreements being reached for other rare disorders in the near future,” Crausaz said.

Health Minister Jonathan Coleman welcomed Pharmac’s decision, and said it would mean HAE patients could get treatment closer to home as the medicine could be self administered.

“Currently people with the condition have to go to hospital if they have a swelling attack.

“With an injection they can take themselves, sufferers of this disorder will be able to live a more normal life.”

Coleman said around 25 patients were likely to meet the access criteria for Icatibant.

He added it was encouraging that so many suppliers had engaged with Pharmac to develop new funding options in providing medicines for small groups of patients.

“I look forward to more negotiations being concluded by Pharmac over the next few months so that New Zealanders can gain benefits from these medicines.