Annie too tall for growth hormone help
Just over 4cm stands between Annie Brown and a better quality of life.
Annie suffers from the rare genetic disorder pradersyndrome. It causes compulsive eating and lower than normal muscle tone.
The five-year-old could take growth hormones to help her be more active – but she’s 4.1cm too tall to qualify for funding.
Eleven children nationwide receive funded growth hormones that are used to increase muscle tone in prader-willi sufferers.
But Annie’s parents Meriane and Andy Brown say another 11 kids, including their daughter, don’t meet Pharmac’s criteria.
Taller children naturally have more growth hormone, so don’t qualify for funding.
One of Annie’s symptoms is always feeling hungry and craving food.
“We have to lock the cupboards and it’s really hard to secure the fridge and freezer,” Mrs Brown says.
“The kitchen door is locked apart from meal preparations, but it’s really hard in summer.
“It’s our only access to the backyard.”
The Browns were hoping a recent review would see the height restriction scrapped.
As part of the review, Pharmac’s clinical committee, made up of 10 practising doctors, recommended that wider access to growth hormones was a medium priority.
he Sandringham residents say they’re aware growth hormones aren’t a cure because they won’t stop Annie craving food, and children have to remain on them indefinitely for them to remain effective.
But they feel it would make their daughter more physically active and help her lose weight.
“She can do a lot of things now, but she can’t do them for very long,” Mrs Brown says.
Grant Rogers, whose daughter Emma qualifies for the treatment, says he noticed “an almost instantaneous difference” after she started taking them.
“It’s increased the ability for her to be able to do stuff,” he says.
“Normally she’d fall asleep about 5.30pm but now, given the right circumstances, she can maintain it for longer.”
Mr Rogers says the hormones have allowed Emma to walk and swim for much longer, which has caused her weight to drop and muscle mass to increase.
But he says the hormones have their limitations.
“There have been definite changes, but she’s still not strong enough to go on the monkey bars.”
Annie’s parents have considered buying the hormones privately, but an estimated cost of $20,000 to $30,000 a year has forced them to delay their decision.
“Once you make the decision there’s no turning back,” Mrs Brown says.
Pharmac medical director Peter Moodie says the organisation is still reviewing the growth hormone funding criteria.
Dr Moodie says there are other groups also seeking funding for the hormone and that has to be taken into consideration.
Pharmac estimates the cost of providing the hormones for one child is $11,000 to $22,000 a year.
Disappointed: Sandringham residents Meriane and Andy Brown are unhappy Pharmac has not extended funding for growth hormone treatment to all prader-willi syndrome sufferers like their daughter Annie.