My Little Brother on Drugs

by John B. Carnett 11 a.m. Alex is standing at the board with two of his fourth-grade classmates. John B. Carnett

I swipe an alcohol-soaked gauze pad over my younger brother’s left thigh, an inch below the hem of his SpongeBob boxers. As I screw the needle into the injection pen, Alex feeds me instructions. It’s my first time, but already it’s his 37th.


“Here are the rules: Insert the needle quickly and gently, but only when I say so,” he says, taking the pen to pantomime the motion. He removes the first of two protective caps and turns a knob on the pen—one, two, three, four, five clicks—and watches intensely as his dose is released into the barrel.


“Make sure the skin dimples. That means the needle is all the way in,” he continues. “Press the button until it clicks, then hold it there for 5 seconds. Keep the skin dimpled, otherwise all the medicine won’t go in me. When you take out the needle, do it straight up and fast. And, Jenny, please don’t hit a vein. That huwts me.” Suddenly, dropping his r, Alex sounds much more like his 9-year-old self.


I pinch a clump of skin between my thumb and index finger and wait. “OK,” he whispers. But I can’t do it. “OK,” he repeats. I pierce the fatty tissue and wince—and take it as a compliment that he doesn’t. “Keep dimpling!” he yells.


Here’s the thing: My brother isn’t sick. He’s short. Shorter than every boy and girl in Ms. Lemcke’s fourth-grade class, shorter than 97 percent of boys his age. What I’ve just shot into his 3-foot-11-and-three-quarters-inch, 50-pound body is Humatrope, a lab-brewed human growth hormone (hGH) nearly identical to the hGH secreted by the pituitary gland, the critical metabolic hormone that regulates not only height, as its name suggests, but also cardiac function, fat metabolism and muscle growth.


Alex’s quest for “enheightenment,” as I’ve come to call it, began last summer just as the Food and Drug Administration expanded its approved uses of Humatrope, Eli Lilly & Co.’s recombinant hGH, to include children of idiopathic short stature (ISS)—kids who are extremely short for reasons that are not entirely understood. Kids who, like Alex, are teased or ignored by classmates who may trump
their height by a foot—but whose “condition” may be caused by nothing more than genetics. This groundbreaking and controversial FDA ruling made Humatrope available to 400,000 American children expected to grow no taller than 5 feet 3 in the case of boys and 4 feet 11 in the case of girls, putting them in the bottom 1.2 percentile. For Alex, the nightly hGH shots will probably continue for six to eight years—all to make this otherwise healthy boy grow taller.

Human growth is an invisible but intense process, an intricate and little understood web of genes, hormones and other variables. Genetics aside, growth hormone may be the single biggest player. Between 10 and 30 times a day, your hypothalamus sends a growth hormoneâ€releasing hormone to the garbanzo-bean-size pituitary gland at the base of your brain. Each time the pituitary gland receives a signal, it spits out a small amount of growth hormone. Although scientists think a small percentage of hGH travels to your bones, a majority of the hormone latches onto binding proteins, which carry it to receptors in your liver cells. This triggers the secretion of insulin-like growth factor-1 (IGF-1), a protein that promotes bone growth in children and teenagers until their growth plates, areas at the ends of the bones, fuse, at around age 17 for boys or 15 for girls. After that, growth hormone continues to regulate the metabolic system, burning fat and building muscle, but we produce exponentially less hGH each decade after puberty. Thus, the teenager who can routinely “supersize it” without consequence ages into the 30-year-old whose beer and burgers go straight to his gut.


In 1971, Berkeley chemist Choh Hao Li synthesized the growth hormone molecule, an enormous biotech breakthrough, and in 1985 synthetic growth hormone was approved by the FDA to treat growth hormone deficiency. Prior to the drug’s development, medicinal growth hormone was scarce. What did exist had to be extracted from the pituitary glands of human corpses—most of the time legally, but occasionally by pathologists being paid by suppliers to remove the hormone without permission from the deceased’s family. As a result of the shortage, hGH treatment was conservative, reserved for kids who made very little if any growth hormone themselves. Between 1963 and 1985, 7,700 patients in the U.S. took the hormone. Ultimately, 26 of these patients died of Creutzfeldt-Jakob disease (CJD); the fatal brain disease that’s similar to mad cow is thought to have contaminated a batch of the pituitary hormone doled out in the ’60s and ’70s. The FDA banned growth hormone when the first two cases of CJD were reported in early 1985—just in time for the agency’s approval, later that year, of the synthetic version.