PHARMAC press release - Icatibant funding

16 September 2015

People with the rare blood condition hereditary angioedema are the first to benefit from the increased competition for rare disorders medicines promoted by PHARMAC.

PHARMAC has approved an agreement with Shire Pharmaceuticals to fund icatibant (Firazyr), which treats hereditary angioedema (HAE). HAE causes episodic attacks of swelling that can be life-threatening.

Chief Executive Steffan Crausaz says PHARMAC began testing a new approach to promote competition in 2014, seeking better access to medicines for people with rare disorders. PHARMAC identified up to $25 million available over five years, and sought proposals from companies supplying medicines for rare disorders.

“We received proposals for 28 medicines, many of them previously not seen in NZ before and from suppliers PHARMAC has not previously done business with. Shire, for example, had not previously supplied medicines in NZ.”

“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,” says Steffan Crausaz.

“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.”

Icatibant can be used to treat severe attacks of hereditary angioedema. An injection that people can have at home, its use can avoid the need for people to go to hospital for infusion treatment. Because it avoids the need for people to visit hospital for in-hospital treatment, PHARMAC estimates the funding decision should save DHBs money. 

PHARMAC estimates there may be up to 90 patients with hereditary angioedema in New Zealand, of whom up to 25 may meet the criteria for funded treatment with icatibant.


“It’s a positive news story for people suffering from the debilitating effects which hereditary angioedema (HAE) can have. And a new approach by Pharmac to have innovative companies like Shire compete for a portion of the 25 million over 5 years in the rare disorder space. It’s hoped that this approach will enable other drugs to be funded in New Zealand, based on such a competitive model.  So yes, for NZORD, it’s a positive step forward for the 8% of the population suffering from rare disorders - who individually may only equate to a few.”

Letitia O’Dwyer Chief Executive, NZORD