PHARMAC To Fund Prader-Willi Growth Hormone

PHARMAC Funding Growth Hormone For Prader-Willi Syndrome

A growth hormone that enhances the lives of children with Prader-Willi syndrome is now fully funded.

PHARMAC, the Government’s drug-funding agency, will spend an estimated $400,000 annually on subsidising growth hormone for children with the condition. About 15-20 children will receive subsidised growth hormone for Prader Willi Syndrome.

Funding became available from yesterday (2 October 2006), and will be “retrospective” for those children already being treated with growth hormone, provided they met the access criteria when they first started receiving growth hormone.

The funding decision follows advice on access criteria being received from a specially-convened committee that included representatives from a Prader Willi patient group.

Prader-Willi Syndrome is a complex combination of symptoms including poor muscle tone that limits exercise and play, and constant hunger. In New Zealand, about two to four children are born with the condition each year.

Many people would have seen the debilitating effects of Prader-Willi syndrome – for affected children and their families – on a television documentary last week.

PHARMAC Medical Director Dr Peter Moodie says growth hormone can help children with Prader-Willi syndrome and their caregivers. PHARMAC’s consideration of growth hormone for Prader-Willi Syndrome dates from 2002. Dr Moodie says that until recently, clinical evidence was not strong enough to convince PHARMAC’s clinical advisory committee, PTAC, to recommend funding.

Dr Moodie says that once PTAC’s recommendation was made, PHARMAC moved as quickly as it could to progress the funding decision.

“Evidence to support the funding application is now clearer and shows there are benefits for these children,” Dr Moodie says. “The evidence shows that growth hormone helps increase height and muscle mass. This helps children with Prader Willi become stronger and more active and, therefore, less prone to morbid obesity.”

PHARMAC already funds growth hormone for children who are growth hormone deficient or those with very short stature associated with other conditions.

By widening criteria, children over two-years-old with Prader-Willi Syndrome may also now be eligible for funding under PHARMAC’s criteria. Funding growth hormone for other conditions remains under consideration, says Dr Moodie.

It is estimated the treatment will cost an additional $1.72 million over five years.

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