Reaching for growth
Use of hormone therapy fuels debate among doctors
CARVER -- Nancy Hubbard used to push aside her worries that her twin boys were too short. She knew her sons were not destined for great height -- she is 4 feet 11 inches, and their father stands 5 feet 1 inch. She was grateful for two healthy boys with sparkling blue eyes and broad smiles.
But one afternoon two summers ago, she was watching her identical sons, then 12, during a Pop Warner football practice. And for a split second, she saw them differently.
"At that moment, I wasn't looking at them through a Mom's eyes, just another human being's eyes," said Hubbard. "And I thought, 'They are so small compared to the other boys.' "
Months later, her sons joined thousands of other healthy boys who receive daily injections of growth hormones to treat what they and their families regard as a lifelong liability: their diminutive stature. Supporters of this treatment describe it as safe, cutting-edge medicine, a way to spare many boys the traumatic taunts of the taller world. But critics of this expensive therapy call it "cosmetic endocrinology," and dismiss it as part of an American obsession with sculpting bodies at the expense of building character.
Prescriptions for growth hormones have risen steadily in the past few years, and doctors attribute much of the rise to increased interest from families with healthy children. Parents seek therapy for boys far more often than for girls. Typically, they want reassurance that their sons, as they take their first fragile steps toward manhood, will not suffer in sports, jobs, and dating.
"Society says that boys who are short are wimps, and girls who are short are cute," said Dr. Stuart Brink, a pediatric endocrinologist in Waltham who treats Hubbard's twins, Matt and Paul Walsh.
Thousands of children qualified to receive treatment last summer when the Food and Drug Administration ruled that Eli Lilly's synthetic growth hormone, Humatrope, could be safely prescribed to healthy, but short, children who met certain criteria. Previously, the FDA had approved treatment only for children who had a medical diagnosis, such as Turner Syndrome, a brain tumor, or growth hormone deficiency, that caused their stunted growth.
But now, the mere look of shortness is enough. According to the FDA, children qualify whose height is lower than 97 percent of others their age or whose projected adult height is far below the average -- less than 5 feet 3 inches for men and below 4 feet 11 inches for women. This FDA ruling, doctors say, shows the agency's belief that children, who lack a specific diagnosis, may still have a compelling reason for treatment.
"It's an acknowledgement that it's a social liability," said Dr. Laurie Cohen, a pediatric endocrinologist at Children's Hospital in Boston.
Treatment does not turn a short child into a tall one. Typically, a child taking growth hormones for several years may see an additional 2 or 3 inches to their final adult height, doctors say. In the 18 months that Matt and Paul Walsh have been taking the drugs, they have each gained 4 inches. Their doctor cannot say how much of the increase is attributed to the shots, and how much to natural growth. At 14, they now stand 4 feet 6 inches, the height of a typical 10-year-old boy.
At the doses recommended by the FDA, many pediatricians say the treatment is safe. Doctors tell patients, however, that they may experience temporary headaches and hip pain during treatment. They also concede that long-term data are not available for the possible negative side effects of the drug on healthy children.
Eli Lilly's researchers estimated last year that, of the 400,000 children nationwide who qualify under the FDA rules, roughly 40,000, or 10 percent, would seek treatment in the next five years. While no statistics show exactly how many children receive growth hormone shots, prescriptions have grown steadily in the past few years. For instance, prescriptions for Humatrope rose 38 percent from 2002 to 2003, according to
Although FDA approval is a recent development, the treatment of healthy, but short, children with growth hormones is not. Over the past decade, doctors have often prescribed the drug for children with no medical diagnosis, often after passionate appeals from families, according to surveys of physicians. Dr. Paul Boepple, a pediatric endocrinologist at Massachusetts General Hospital, said that even after he determines that the potential side effects outweigh the benefits a few extra inches would bring a child, many parents pursue second opinions.
"They are inclined to do something," Boepple said. He said the fact that these parents appear in a specialist's office suggests they perceive their child's height as a significant problem.
As they enter eighth grade at Carver Middle School, Matt and Paul say they have been teased little, though Paul recalled once being called "midget." They have not much minded being short, though they trust their parents' view that the shots they take are an investment toward their future.
"It's not good going through life short," Paul said.
They give each other the daily injections of Genotropin, counting out loud as they administer the shot using easy-to-use injectable devices. The injection into the buttock, thigh, or stomach takes five seconds. Some days, the shots are so routine they "do it while watching TV," said Paul. Other days they feel the sting.
"We squeeze a pillow in case it hurts," said Matt, demonstrating with a cushion in his bedroom, where he shares a television, weight-lifting equipment, and video games with his twin brother.
Roughly every two weeks, the twins are given shots of Lupron, a testosterone-suppressing drug to delay the onset of their puberty, a move designed to help the boys achieve the maximum benefit from the growth hormones.
Doctors could find no clear-cut explanation for the twins' height except that they had short parents. Among the many diagnostic tests the boys underwent, a couple yielded mixed results -- but not enough to say they had a medical problem. The doctor ultimately told them that growth hormone shots were entirely optional.
Matt admitted that he sometimes grows weary of the shots, now and then wishing his body could just proceed along its natural course. He thinks to himself at times that if he grew to be a very short man, it would be no big deal.
"To me, it's OK," he said. "But to other people, it's not."
What does he mean by "other people?"
"Society, I mean society," he replied.
Beyond the discomfort of the shots, the cost of treatments is nearly prohibitive, except for the wealthy. The price tag for the growth hormones ranges from $10,000 to $40,000 a year, depending on the dosages required for the child. Insurance coverage of growth hormone therapy is unpredictable, particularly for healthy children. To the great relief of the parents of Matt and Paul, their medical insurance covers the cost of their injections.
If cost does not cause some families to pause, some psychologists think other reasons should prompt parents to reconsider tampering with a child's hormonal system to gain a few inches of height. Last month, David Sandberg, associate professor of psychiatry and pediatrics at the University of Buffalo, State University of New York, and his colleagues published a study in the journal Pediatrics indicating that short children were as socially well-adjusted as their taller peers. Sandberg found little sign that short children were the targets of increased bullying or teasing. The only disadvantage, according to this survey, which questioned adolescents in a New York school district, was that short children were often regarded as younger than their age.
He said the expanding use of growth hormones is a disturbing sign of the times, a reflection that "short height has become a disease, mostly for boys."
But others said researchers like Sandberg are blind to the sobering realities of today's adult world in which presidential candidates typically stand about 6 feet tall (President Bush is 5 feet 11 inches, and his Democratic challenger John F. Kerry is 6 feet 4 inches), women signing up for online dating services favor taller men, and men with greater height, according to one study, earn more than their shorter counterparts.
"If you want a list of the social and workplace opportunities denied, it's longer than your arm," said Earl Gershenow, who runs the website for the Human Growth Foundation, a nonprofit group with a membership of about 1,000 families that offers public information about height issues.
John Paul Walsh, the father of the twins, who is divorced from the boys' mother, said he was often called "dwarf" and was underestimated in age and ability throughout his childhood because of his height. His memories of growing up as a short boy are so painful, he said, that he often worried about raising sons.
"You have to prove over and over again that you can do what a tall person can do," said Walsh, 42, who works as a groundskeeper and lives in Dedham.
Walsh and Hubbard also have a 17-year-old daughter who is 4 feet 9 inches, though they have never sought treatment for her because she is content with her height. Walsh said that, as a boy growing up in Needham, he was tested for growth hormone deficiency and other medical conditions to explain his short stature. But doctors could find nothing wrong, so he was never given medical treatment and his body naturally grew to 5 feet 1 inch.
He said he is pleased that today's doctors have something to offer his sons, because "even a couple of inches makes a world of difference."
Hubbard, a 41-year-old engineer, said concluding that her sons needed daily injections was an agonizing choice. She said she realizes that the treatment comes with a contradictory message about what it means to be a short boy in today's society.
"For years, I told them, 'God made you special. He made you that way,' " said Hubbard. "And now, I say to them, 'You need shots.' "
Patricia Wen can be reached at wen@globe.com.
