Wednesday, January 2, 2013

Health: Does it come in all shapes and sizes?

Last month I sat in on a bioethics session where health providers discussed 2012 media stories with a health ethics angle.

One was about using costly growth hormone in kids who are short (but who are healthy, not growth-hormone deficient and otherwise typical).

In this National Post story, two parents in a custody battle couldn’t agree on whether their healthy son should receive daily growth-hormone shots at a cost of $30,000 a year over many years.

In this case the healthy boy’s predicted adult height without the injections was 5’3.” Growth-hormone treatment might give him an additional 1.5 inches.

One health professional at the bioethics talk questioned whether it was fair to deny a child the opportunity to do something in adulthood that depends on size—like being a firefighter—by restricting growth hormone treatment. What if a healthy but exceptionally short child has dreams of fighting fires?

Because I was once a parent demanding growth hormone for my son Ben—whose short stature stems from a genetic condition—I understand how extreme shortness can be viewed as a physical disability in a world designed for big people.

However, having given my son shots of growth hormone six nights a week during a six-month trial many years ago, I question the treatment of what I now believe is more of a social, than physical, disadvantage.

Can't we promote a vision of health that is more inclusive of different body types?

Can a gain of one or two inches in final height justify daily shots over a decade that cost as much as a mortgage?

There are all kinds of studies showing that tall people make more money and have other advantages in life. This 2004 Journal of Applied Psychology study found that a person can earn an extra $789 per year for every inch above average height they are.

“There's plenty of evidence to suggest that height—particularly in men—does trigger a certain set of very positive, unconscious associations,” notes Malcolm Gladwell in Blink, the bestseller about how we make snap judgments.

Just before Christmas I was driving home and heard a CBC radio interview with bestselling author and New Yorker staff writer Adam Gopnik. I haven’t read any of Gopnik’s eight books but I have read some of his brilliant writing in The New Yorker.

When asked “If you could change one thing about yourself what would it be?” this is how he answered:

“I wish I just had six inches vertically because I am a very short man and unfortunately and truthfully being short is a deeply limiting condition in every sense. I think that if I had been somewhat taller my life would have taken a completely different line. And though people don’t admit it, the sense that the short are fundamentally jumpy, nervous and needy is built into that and the tall man is always the man who is the calming leader.”

For someone who’s achieved remarkable success in his career, Gopnik’s wish to be taller struck me as unimaginably sad. I think he's right about the prejudice against short people. But to go through life in a healthy body feeling that your height prevented you from a certain greatness makes me shudder. What kind of world are we living in?

Instead of being gatekeepers to drugs that are driven by the social stigma of being short, how can we work for a world in which a child’s opportunities don’t depend on height and other attributes of appearance? Wouldn't that be a kind of disease prevention—with huge savings in medical and psychological costs? What can be done to change public attitudes so that we expand our notions of health? Can't wellbeing come in all shapes and sizes?

My son’s trial on growth hormone didn’t work and we took him off it.

But sometimes I imagine how I would have felt if we’d given him shots six nights a week for 10 years, and then had to face up to the fact that he was one or two inches taller than what he'd have been without it. I know I would have been wracked with guilt and the sense that I'd made the wrong choice. At the time I was gung-ho to reduce the limitations a genetic syndrome placed on my son. But it's painful to remember the times my younger daughter would alert my son that I was getting the needle ready and he would run to hide in a different part of the house.

To think that this treatment is gaining use with families of children who are otherwise healthy is troubling.

I think we have a critical role to play in challenging stigma so that kids and adults can live in the world without interventions to make their bodies fit social norms.

Reactions:

4 comments:

I find it odd when people answer a question as Gopnik does. He is tremendously successful, I know other successful people who are not tall.
Certainly being taller may have helped him, just as being attractive helps people in other ways, but it is no guarantee of success or happiness.
If he'd been taller maybe he'd never have been a writer.

I know several young men who are very short, under 5'4" and they wish very much that their parents had helped them get an extra inch or two.

I don't know any kids who underwent it who are sorry.

Hi Catherine -- thanks for your message. I wonder if these men would have wanted to have shots six days a week over 10 years (including having to transport the medication, which has to be kept cold, and the needles etc, whenever you travel, go to camp etc), at a cost of $300,000, without really knowing the long-term effects, to gain 1.5 inches on average?

The results aren't what people expect (e.g. in the bioethics session I mentioned people were assuming it would turn a very short person into someone firefighter size). The average increase is 1.5 inches.

When I pushed for it for my son I was focused on any increase in height being beneficial. But when we're talking about an inch or two for 10 years worth of daily injections at huge cost, it sounds like insanity to me now. Is a young man who would have been 5.1 going to be happy that he is 5.3 -- if he even gets two inches? It doesn't sound like it in this culture.

However, I also totally get the pressure and I certainly felt it for my son. and perhaps for some people an inch or two may have a small functional difference in terms of being able to function in the world. But I think it's crazy from a "health"-perspective. Thanks for writing!

My daughter receives HGH as an injection 6 nights per week and has for over a year. It has made a temendous improvement in her growth velocity; without it, her adult height would be on the 'extreme' short end for a woman. The needle is small and barely an inconvenience (she never cries and only hates being interrupted if she's doing something to take it). We are blessed that our insurance covers the very expensive cost of the drug. I say all this because I think, like every other choice we make with and for our children, we can't presume that our choice is good for another's child. Whether it has to do with increasing height (even an inch or two), providing corrective surgery for a birth 'defect', or trying controversial therapies for a learning disability (these are just examples) we, as parents, do the best we can. Of course we hope our children agree with these choices as they mature. There should be no judgement.
Kris M.