My Little Brother on Drugs

But it’s not as simple an equation as these numbers make it seem, says Dr. David Sandberg, an associate professor of psychiatry and pediatrics at the University of Buffalo. Sandberg’s studies have found that although short kids are teased and treated younger than their age, there is no evidence that making them 2.5 inches taller will make any difference in their quality of life. “Our lives are so much more complicated than one single factor,” Sandberg says.


In clinical trials by Humatrope manufacturer Eli Lilly, children taking the drug grew on average 1 to 1.5 inches more than the placebo group; 62 percent of the kids tested grew more than 2 inches over their predicted adult height, and 31 percent gained more than 4 inches. This would land Alex, whose predicted height without growth hormone is about 5 feet 6, somewhere between 5 feet 7 and 5 feet 10.




Dr. Harvey Guyda, chair of the department of pediatrics at McGill University in Canada, questions the studies, especially given what he describes as a high dropout rate. In the Eli Lilly studies, he points out, only 28 percent of the placebo and 42 percent of the growth-hormone- therapy subjects completed the study; it seems reasonable to assume, he says, that the subjects who endured the study were the ones who demonstrated the most extreme growth.


“The mantra is that healthy, short kids are handicapped, abnormal, have all sorts of problems, and we have to do something,” says Guyda, who testified against the FDA’s approval of Humatrope for treating kids with ISS. “But there is no data to prove that these kids are any different from normal-stature children, and there is absolutely zero data that says when you give growth hormone to a kid who’s said to have this psychosocial problem because he’s short there’s any benefit. Prove to me that a few extra inches is worth the cost of daily injections.”

Financially alone, that cost, according to Guyda, amounts to $10,000 per centimeter for a growth-hormone-deficient kid, and somewhere between $22,000 and $43,000 per centimeter for kids with idiopathic short stature. For now, my parents’ insurance company, Anthem Blue Cross and Blue Shield, has agreed to cover Alex’s treatment, but not every short child has insurance or a pediatric endocrinologist to recommend treatment. The not-surprising result is that any advantage hGH does confer will likely go to already advantaged patients: rich, white American males. (For every two girls who receive treatment, five boys do; this is at least partly explained by the fact that boys suffer more discrimination in relation to their short stature than girls do.)


A week before Alex’s three-month checkup, I return to Yale, this time to meet with Tamborlane, my own pediatric endocrinologist, whom I haven’t seen since my last appointment eight years ago. I’m especially interested in his opinion about Alex because Tamborlane, now the chief of pediatric endocrinology at Yale, voted for the approval of Humatrope to treat idiopathic short stature. We meet in the cafeteria, and although I’m not looking for a free checkup, he palpates my throat right there. “Thyroid feels healthy,” he reports.


Tamborlane voted for the approval, he tells me, because the drug was already OK’d to treat some groups of children who produce plenty of growth hormone—children with Turner syndrome, a genetic abnormality; children born small for gestational age; and children with chronic renal insufficiency, a kidney disease. In each of these cases, hGH isn’t treating the disease, it’s treating the resulting undesirable physical characteristic—short stature. In kids with ISS, though, it’s even more ambiguous because the disease, if there is one, is unknown.


I present Alex’s case to Tamborlane, explaining my family’s motivations and the uncertainty surrounding the diagnosis. I tell him that although I want Alex to have every advantage and the best possible quality of life, I’m concerned about the drug’s unclear benefits and the potential long-term risks for kids who are short for reasons that aren’t fully understood.


“If Alex were your son,” I ask, “would you put him on hGH?”
Tamborlane leans back and pauses to consider the question.

“Given the uncertainties, probably not. I was a short, geeky kid at a football prep school, and I survived—maybe even gained something from it,” he says. (He’s now 5 feet 9.) “All signs say Alex would probably grow to a very livable height without the growth hormone.”