The stuff that worries me when everything else is going great…

‘Unfair’ call hits Callum

By HAYDEN DONNELL – North Shore Times | Thursday, 20 November 2008

 

BEN WATSON/Suburbans

FIGHT FOR FUNDING: Callum Grace is deemed too tall to get the growth hormone that could help fight his rare genetic condition

Growing too much has cost nine-year-old Callum Grace a shot at a normal life.

The Torbay boy is one of 23 New Zealand children with genetic condition prader-willi syndrome, which makes him permanently hungry and lacking in muscle tone.

The condition can be treated with growth hormones but funding is only available to sufferers below a set height.

Though he only stands 1.2 metres, Callum is judged too tall to get funding from government drug agency Pharmac.

His stepmum Heidi Moorcroft-Grace says that is unfair.

Read more…

Of course, height is only a tiny bit of the benefit of growth hormone therapy for people with Prader-Willi.  Yes, without it they will be much shorter in stature than the average person.  But the main reason for the treatment is what it does to the muscle to fat ratio.  Hope’s body is now laying down the fat cells that she will live with for the rest of her life, and it is laying down too many of them in proportion to the muscle cells her body is creating.  The HGH helps to improve that balance, giving her a better shot at a more typical body composition.  Having more muscle will help her to metabolize food more normally and to be able to eat a little less restrictive diet (emphasis on “little”).

I’m under no illusion that HGH is going to make everything alright.  If I’m going to be totally honest I admit to being rather pessimistic about how much it will help, perhaps it’s a defense mechanism for me to not set my hopes too high.  But even if it doesn’t make things perfect, it will make things better for Hope.  She will appear more typical, she’ll have more energy to participate in typical kid activities.  I don’t know that it will do anything for the hunger or the preoccupation with food–and those are the things that weigh heaviest on me.  Still, whatever the HGH won’t help is far outweighed by that which it will.

On a fairly regular basis I read about families who’s pediatricians or endocrinologists take a “wait and see” attitude toward HGH treatment because the child isn’t yet fat, or is still growing along a typical curve.  To me that seems so short-sighted.  I am so thankful that we have had such tremendous support from Hope’s doctors.  Our pediatrician understood PWS and the benefit of HGH therapy before we did, and even if she hadn’t, she has consistently deferred to our geneticist on the Prader-Willi issues anyway–never raising issues of “turf.”  Our geneticist made sure to tell us which endocrinologist was the most “enthusiastic” about HGH therapy.  Nobody stood in our way toward getting Hope on the juice.  Even our insurance company, through our heaven-sent case manager–never presented an obstacle.  I am thankful that I never had to fight for the treatment, and I would have.  My heart goes out to the families of children with PWS who are told “wait” when their gut (and all their research) says “now.”  

But I do worry that it could all be taken away.  I worry what could happen to drugs like Genotropin under a nationalized health care system, with their exorbitant price.  I worry about what could happen if something happened to Tammy and we lost our medical benefits, would Medicare/Medicaid/Social Security cover the HGH?  I worry about what could happen if people continue to use HGH for purely cosmetic or fraudulent reasons.  On the heels of the revelations of HGH treatment amongst professional athletes, legislation was introduced that would have severely curtailed or compromised access to HGH for people with Prader Willi.  Fortunately, there are well-organized and vigilant associations in the US that responded quickly and got the legislation pulled.  But still, I worry.

Not that I have any plans to move to New Zealand, but take a moment, if you will and email Pharmac, the Pharmaceutical Management Agency of New Zealand.  They are currently revisiting the criteria for HGH approval.  There are 23 people in New Zealand with Prader-Willi Syndrome, under the current criteria only 10 are eligible for HGH therapy.  Be nice, try not to be an imperialist American, but state your case…our case.  Hope and our family are bonded to these families in ways beyond our control.

Advertisements
This entry was posted in Postcards from Holland, PWS and tagged , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s