My Little Brother on Drugs

Again his response surprises me—this time because it challenges my assumption that Alex is in fact a good candidate for treatment. “We can define those youngsters who make virtually no growth hormone, because they have a very typical presentation,” he says. “And we can generally sort out those youngsters who make an ample amount of growth hormone.
We have a very difficult time, however, defining youngsters like your brother, who make some growth hormone, but who possibly don’t make enough.”

He explains that although Alex’s levels of IGF-1 are low and his height has gradually declined to the first percentile, he does produce some growth hormone.


“Your brother is a murky case, and there are enough questions about the safety and efficacy of this drug that I cannot say one way or another whether he should definitely receive treatment,” he continues. “Frankly, I felt we could wait—but not very much longer—and gather information. It was a decision that your family made and, I suspect, Alex made.”

Here is a manifestation of just how complicated and unpredictable the growth process is: It’s impossible to measure hGH levels using a simple blood test. Because the hormone oscillates in the blood, constantly peaking and sinking, a hundred samples can yield a hundred different answers. So doctors must rely on growth-hormone-stimulation tests, where the patient is injected with an artificial agent that stimulates the pituitary gland to produce growth hormone. After the agent is injected, nurses sample the patient’s blood every 30 minutes for 2 hours, hoping to catch the pituitary operating at full strength.


“These are artificial tests,” Genel says. “None of them tell us anything about what a youngster does under normal circumstances. It only tells us that if you give them an artificial stimulus, the pituitary gland will release hormone.”



Genel shows me my brother’s test results: Alex produced readings ranging from 0.11 to 9.9 ng/ml. Though most doctors look for a top level of at least 10 as an indicator of healthy hormone production, Yale has a lower benchmark of 7 or greater. So by Yale’s standards, Alex passed. My parents, I realize, have no idea that Alex may not be growth-hormone-deficient by some careful definition; they believe he is clinically deficient. Essentially, my little brother is an experiment.


Over dinner that night, my mother and father recall the day Alex’s test results arrived in the mail. Startled by the low numbers, they assumed he was producing far too little growth hormone. They had no idea growth hormone production is so difficult to measure. “I’m a parent, not a scientist,” my mom says. “I shouldn’t have to know that.” It’s safe to take him off the drug, I tell them: “It’s not too late to change your mind.”

But despite the day’s revelations, they decide to move forward with treatment. Alex’s confidence has already soared since starting Humatrope; they don’t have the heart to disappoint him. Besides, my parents say, they’re concerned Alex will have fewer professional opportunities, and worry he won’t find a woman to be with, if his height remains in the basement.


Such anxieties, of course, are hardly unique to my parents—and, in fact, a quick glance at the research would appear to back them up. A recent University of Florida study, for example, found that each extra inch of height amounted to $789 more a year in pay. So someone who is 6 feet would be expected, on average, to earn $5,523 more annually than someone who is 5 feet 5. Another study indicates that just 3 percent of Fortune 500 CEOs are shorter than 5 feet 7, and more than half are taller than 6 feet, though only 20 percent of the population is.