An­nie too tall for growth hor­mone help

Auckland City Harbour News - - News - By Scott Mor­gan

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.

Photo: JA­SON OX­EN­HAM

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.

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