Dion Bonner suffers an ultra-rare, potentially fatal blood disorder known as Paroxysmal nocturnal hemoglobinuria.

“[It] causes me to be anaemic, it also causes the prospect of blood clots in unusual areas of the body, so everything from heart attacks to strokes to liver damage,” explains Mr Bonner .

Pharmac’s advisory body is recommending funding for the only treatment for PNH be declined, because of the high cost per patient.

“What it’s going to mean is I face the prospect of an early an unpleasant death when I’m in my 20s,” says Mr Bonner.

Pharmac CEO Steffan Crausaz says it’s just too expensive.

“It’s probably one of the most expensive treatments we’ve ever evaluated at well over half-a-million dollars per annum,” Mr Crausaz explains.

However social policy adviser Greg Coyle says that isn’t good enough.

“They’re being treated by the health system as lepers,” says Mr Coyle .

Some experts, including Mr Coyle, say there should be separate funding for rare disorders.

“Why is a person with a condition which is suffered by a few less entitled to a treatment than a person who is suffering a condition suffered by many?” asks Mr Coyle.

Labour estimates funding so-called orphan drugs could cost up to $25 million a year.

Critics question spending millions on one patient, when that same money could be used for medical treatments for thousands of people, but Mr Coyle doesn’t agree.

“Those critics are usually people who don’t have that one disease,” says Mr Coyle.

Pharmac is in the process of consulting on what the criteria should be for funding decisions.

“We pick those ones that offer the New Zealand community at large, the very best health that we can afford,” says CEO Steffan Crausaz.

A reality that’s likely to be of little consolation to Mr Bonner.

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