Tag Archives | preemie

Big Pharma

Another post from the archives (I’ve got biiig archives…wanna come over and see them sometime?).  This post is from 2010, when we first started Liam on HGH. He’s been doing these shots now for three years, more or less, and still hates them.  But he’s growing. The doctor told us, back in April of 2010 “that if we lived in Peru” Liam’s height wouldn’t matter that much because men are much shorter there. Having no immediate plans to move to South America, however, we opted to live in the world of Big Pharma instead.

 

We’ve entered the world of Big Pharma.  At the beginning of this past summer, Liam announced that he was ready for “those shots that make you grow” –and in a sign of how long it takes to get approved for this medicine, we only started the shots last week.

First step? A lovely four-hour blood test, administered while Liam sat in a hospital room, starving hungry because he couldn’t eat until the test was over. That was in June and he’s still angry about it.

Second step? Forms, forms, forms.  Our endocrinologist says that insurance companies make the application process for this drug ridiculously complicated—and in fact there is someone from Pfizer (which makes Genotropin) who comes into endocrinologist’s office once a week “just to help” with the Human Growth Hormone application forms. It seems a little incestuous, don’t you think? Having a rep from Big Pharma in the office, making it easier for you to prescribe HGH to your patients?

Although, of course, as beneficiaries of the nice lady in the doctor’s office, we went through all the various hoops pretty easily. We talked to people at Pfizer, where there is an entire department devoted to Genotropin, including doctors, nurse liaisons, patient care consultants…I talked to about five different departments–probably I could’ve found someone to consult on a new color scheme for the kitchen if I’d asked around.

We talked to the pharmacy reps who order the drug and to the reps who talk to the insurance company–but we couldn’t talk to the insurance company. Liam’s entire case has been handled, more or less, by people sitting in cubicles in anonymous office buildings somewhere in New Jersey–and none of them have ever laid eyes on Liam. After the blood test last summer and a few phone conversations in August, we never heard from our actual endocrinologist.  She’s regularly on those “best doctors in New York” lists—but trying to get her to return a phone call? You’d have better luck mapping a genome with your iPhone GPS (hmm… new app?)

All these nice people sent us literature and videos and dvds about the drug; and “fun” calendars; and even stickers for the “Leap Frog Club:” with every refill of the drug, you get a sticker, and after six stickers, you get a prize. Woo woo. I guess that’s supposed to be consolation for getting stuck with a needle six days a week?

And we got a huge and scary red “Sharps Disposal” container; needles and swabs and a “pen” to inject this wonder drug…And we got the drug itself: a cartridge that we insert into the pen, the way you do an ink cartridge into a fountain pen.  One cartridge is about eight doses of the medicine. Would you like to know how much a cartridge costs, approximately?

700 bucks.

Right. 700 smackeroos. Multiply that by…well, the endocrinologist says that the medicine is supposed to be administered through puberty.  Let’s see. That’s six shots a week times 52 weeks times 5 years.

Comes to about $182,000.  Give or take ten grand. Explains why insurance companies would rather Liam just rolled up his shirt cuffs and got his pants hemmed instead of taking these shots.

Do you suppose if you work for Pfizer and your kid needs HGH you get a discount? Five cartridges for the price of four, something like that?

It feels a little strange, I have to say, to be willingly participating in a system that is so broken (of course, I voted, too, so I guess I’m a sucker for broken systems).

But I’m not going to quibble about the price because Liam needs this stuff:  he’s tiny and not growing very much and he’s filled with angst about his size.  I just got him a new pair of corduroys–size 7 slim–and had to cuff them twice, plus cinch them in at the waist. Probably I could’ve gotten him a size 6, but that’s the size I get for Caleb, and I couldn’t bring myself to buy my 10 year old and my 6 year old the same size pants.

I can still afford to buy my kids pants, though, even after we’ve started this medicine, because we’re among the lucky ones: we have “good insurance,” so the cost to us is minimal. God forbid what would happen if we didn’t have insurance and decided that Liam needed this medicine.

I was thinking the other day about how expensive Liam is. I mean, all kids are black suck-holes of financial need, but Liam?

He’s like our own little Mastercard ad:
Two months in the NICU? Umpteen thousand dollars
Three years (3 months to 3 years) PT and OT through Early Intervention? Umpteen thousand dollars
Five years of HGH? Umpteen gazillion dollars
Liam himself? Priceless

Continue Reading · on August 22, 2013 in Children, growing up, HGH, Kids, Parenting, preemies

Sinker

Being on the road for a month has taken its toll on Liam. On all of us, really, but he’s been having what my mom calls “sinkers” on a pretty regular basis. If he were a girl, I’d say he’s getting his period, but he’s a ten year old boy, so I don’t think that’s the right explanation.

He loved Paris when we were there…until he hated the weird pizza, the strange hot dogs, and the bizarre toilet flushing mechanisms.  And he thought London was great, until confronted by traffic patterns and crosswalks that didn’t make any sense (to him), milk that didn’t taste like the milk at home, and more toilets with bizarre flushers.

At the root of his sinkers, of course, is a mixture of homesickness and anxiety. He misses his friends terribly and has written them postcards and emails, but you know? Ten year olds just don’t find much solace in written communication. Their texts to one another are a mixture of insults and soccer scores.  He’s really worried about starting his new school in Abu Dhabi: the other kids will think he’s a freak because he’s so small (and here’s why) he won’t find a soccer team, he won’t make any friends, when he gets back to New York his soccer skills will have eroded so badly that he won’t be able to rejoin his travel team.

The poor guy: I think his mental image of “London” was just a series of green fields filled with kids playing soccer and that he could just wander over and join a game. Alas, despite all time we’ve spent in parks, both here (and in France), we’ve not seen anyone playing soccer.

On the one hand, I want to shake him and say that pizza tastes weird because in Paris you’re not supposed to be eating pizza; crosswalks make sense for London traffic; hot dogs taste weird under the best of circumstances and milk is milk, so just shut up and drink it.  As for the funky toilets and why they can’t just flush like a good old US potty? I’ve got no answer for that.

On the other hand, of course, my heart cracks for him. It’s hard to live out of a suitcase for any length of time and to do so with the knowledge that you’re not going “home” but to yet another strange place is even harder. And of course he’s worried about starting a new school—we’re all worried about what’s next.

When he crashes and cries, snuffling into his pillow about being scared and lonely and sad, I sit next to him on the bed, rub his back, and tell him it’s all going to be okay, that we’re sure he’s going to make friends, find soccer, like his new school.

Usually I can soothe him to sleep and when he wakes up the next morning, his world looks less gloomy.

His anxieties feed my own, though, so that I lie awake in the dark while every terrible possibility (terribility?) floats through my head and the “what ifs” ricochet around my brain.

I’m sure it’s all going to be fine, I tell myself in the morning.

But in the middle of the night, I think, “what if it’s not?”

Continue Reading · on August 7, 2011 in Abu Dhabi, Children, family, growing up, Kids, Parenting, Travel

Wordless Wednesday

So I know there aren’t supposed to be words, but without words, you won’t know what I’m holding: these are the diapers we used on Liam when he was first born. I’d forgotten that I’d saved a few of these and they surfaced when I was packing for the move.  Amazingly, these diapers swamped my tiny boy’s body.

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Continue Reading · on July 13, 2011 in birth, Children, preemies, wordless wednesday

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