KEY POINTS:
Pharmac may extend funding to treat children with a rare and incurable disease that leaves them permanently hungry.
Only 22 New Zealand children have Prader-Willi syndrome. It's an illness that forces them go to any lengths to find food - including foraging in bins.
Sufferers are born limp and struggle to develop before an insatiable hunger makes many obese.
The condition, which is the subject of a TV3 documentary on Thursday, can be helped with growth hormone therapy but treatment costs about $80,000 a year.
Under current Pharmac requirements, the drug is only free for children who are under a certain height - and only eight out of the 22 meet the criteria.
Australia gives all child sufferers of Prader-Willi syndrome access to the treatment, regardless of their height, and it is also available in Britain and the United States.
Cameron O'Reilly is among the lucky Kiwis to get the treatment funded by the Government.
The Auckland 4-year-old was diagnosed at four months - leading to "dark days in the O'Reilly household", says mum Karen.
Thanks to the support of their community, family and friends, Cameron began growth hormone therapy at a cost of $5000 a year.
"He sprang up like a mushroom," said O'Reilly. "It was like putting new batteries in a wind-up toy."
Ironically, Cameron only gets Pharmac funding because he was found to be too short for his age, not because of Prader-Willi.
His parents - Karen and her husband Rody - are angry Pharmac funds growth hormone therapy for height reasons, but there is a height limit for Prader-Willi sufferers.
"It's just wrong that there is a treatment out there that is available in the western world and Pharmac are withholding it," said O'Reilly.
"Why not fund it for our kids to be healthy?"
Dr Paul Hofman a paediatric endocrinologist and member of Pharmac's clinical advisory board, said the syndrome affects only three or four of the 60,000 babies born a year. Even sufferers having hormone treatment struggled to control their appetite through diet and exercise.
Hofman said Pharmac has a difficult job deciding on funding, but there "is room for improvement".
O'Reilly said Pharmac's review was going at a "snail's pace".
Pharmac corporate manager Dr Peter Alsop said he did not know when a decision would be made.
"The answer is we're doing it as soon as we can."
Inside New Zealand: Insatiable Hunger, screens on TV3 on Thursday, July 10 at 9.30pm.
