Are children dying for an inch or two?
The ethics and dangers of treating children with height-boosting drugs
For years, I’ve been asking audiences a pediatric ethics question: What would you be willing to pay to have your child grow to be a couple of inches taller than he or she otherwise would?
Suddenly the stakes on this issue have been raised considerably: A new federal Food and Drug Administration warning indicates a possible 30 percent increased risk of death to children treated with height-boosting drugs.
Yet even before this startling news, my query — What would you pay for a couple of inches? — was a trick question. Sure, it raises the issue of money, and so we get to discuss whether a couple of inches are worth the $150,000 some parents pay for this “treatment.” (Why not put it in an annuity for the child?) We also get to discuss the problem of our insurance systems getting talked or tricked into paying for this “treatment.”
But, as the FDA seems to now be, I’m really interested in consideration of what this approach might cost the children.
Prior to 1985, using stringent criteria, doctors prescribed human growth hormone, or HGH, only to children naturally deficient in growth hormone. Back then, HGH had to be obtained from cadavers’ pituitaries, so it was scarce. Then in 1985, we learned that a significant number of people treated with cadaver HGH died of the incurable brain disease Creutzfeldt-Jakob.
Since then, drug companies have used engineered bacteria to make recombinant human growth hormone, or rHGH. Now it’s clean, pure and plentiful. Good news?
Well, not entirely, because companies go in search of markets, and sometimes even create them. And that’s what happened here.
Several drug companies decided to try to push the prescription of rHGH for short children, based on the assumption they’d be better off taller. The marketing worked: Nowadays, tens of thousands of children are given this drug just to make them taller.
Some children are short because of underlying medical conditions. But even in those cases, when they are given rHGH to make them taller, the injections do nothing to treat their medical conditions. It’s just vertical cosmetics.
Wait, you might be thinking: So being short isn’t a disease, but doesn’t it lead to psychological problems? Actually, that’s a myth.
Parents asking pediatricians for rHGH may believe their child suffers psychologically from being short — even the child may believe it — but studies led by David Sandberg of the University of Michigan show that height is not correlated with psychological health. Kids who are short do get teased and treated as younger than they are. But those experiences don’t simply equate to psychological and social problems.
Moreover, in cases when the teasing harms a child or escalates to bullying, then surely it’s more appropriate to manage the bullying. Targeting the short child through drugs makes no sense, especially since rHGH usually doesn’t even make treated children average-height; it just makes them a bit less short.
And again, the inches gained don’t matter to psychological health: studies show that measured height simply doesn’t correlate with adjustment or well-being. Satisfaction with your height appears to be more important.
So imagine the shock to many pediatricians and ethicists — but the drug companies’ delight — that the FDA has repeatedly approved this use for pediatric vertical cosmetics.
Why should we care? Because what we’re talking about is the equivalent of a potentially toxic lipstick pushed on kids.
Studies show that children treated this way are either no better off or are left worse off in psychological health. What about their physical health? As noted above, the FDA recently issued a warning relaying findings from a French study that suggest a 30 percent increased risk of death.
The FDA says, “At this time, FDA believes the benefits of recombinant growth hormone continue to outweigh its potential risks.” Certainly, all the data should be carefully reviewed. But what does the FDA mean when it refers to benefits outweighing potential risks?
Does the FDA really believe that a height increase is worth an increased risk of death, or worth any risk to a child, when it has never been shown to have any actual medical benefit?
A fully informed family that chooses rHGH for vertical cosmetics is one that needs help. But not from a pediatric endocrinologist. The family needs a behavioral health professional who can take seriously the family’s anxiety, fears and desires, and treat them in a way that reduces risk and harm.
Psychologists and social workers might not make the problems disappear, but there are evidence-based psychosocial interventions they can employ, and they don’t carry an increased risk of death.
Finally, the family also needs the FDA’s help, to stop allowing children to be used as marketing sites for drug companies that have an interest in seeing us all conflate average with healthy. Children cannot afford us to confuse cosmetic differences with meaningful medical benefits.
Alice Dreger is a professor of clinical medical humanities and bioethics at Northwestern University’s Feinberg School of Medicine.
The original article can be found at chicagotribune.com
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