Pharmac to extend growth-hormone aid for Prader-Willi

The Government's drug-funding agency, Pharmac, is expected to loosen its purse-strings to allow children with Prader-Labhart-Willi Syndrome access to subsidised growth-hormone treatments.

The syndrome is a genetic disorder that causes feelings of constant hunger. This means children want to eat nonstop and can become morbidly obese at a very young age. At the same time, it leaves them with limp muscles that make exercise exhausting.

A project manager at Pharmac, Jan Quin, has told some parents of Prader-Willi children they may qualify for subsidies for children who are very short or have growth-hormone deficiency. Until now the subsidy criteria usually rejected Prader-Willi children as "too tall".

European research in 1998 showed that Prader-Willi patients treated with human growth hormone not only reduced body fat but increased muscle mass and their capacity for exercise.

British authorities recommended growth hormone treatment for Prader-Willi Syndrome in 2002.

At least half a dozen New Zealand families have been paying $10,000 to $20,000 a year to provide the hormone treatment to their Prader-Willi children without subsidies.

The Prader-Willi Syndrome Association last year argued in a petition to Parliament - signed by 10,212 people - that all Prader-Willi children should be eligible for the internationally proven treatment.

Association head Linda Thornton - who presented the petition - has estimated the subsidies will cost the Government about $250,000 a year.

But Ms Quin said the subsidies, proposed to start from October 1, would have strict criteria.

Comments on the proposed criteria for funding close on Thursday.

- NZPA