June 19, 2003 -- — When it comes to your child, how short is too short?
That question has experts split in a fierce debate over the safety and ethics and cosmetically enhancing kids' height, following a government advisory panel's recommendation that growth hormone be approved for use in healthy but unusually short children.
The hormone known as Humatrope, made by Eli Lilly, is now approved only for use in children with rare medical conditions. But the Food and Drug Administration is now mulling the possibility of expanding its use to make extremely short children — boys under 5 foot 3 inches and girls under 4 foot 11 inches — grow taller than they naturally would. The cutoff point to be considered eligible for treatment is under age 14.
Some believe approval of human growth hormone for non-medical reasons will rescue "vertically challenged" children from the societal stigma of being small. But others worry about the implications of such a decision: Will this send a message that short stature is a sickness, an abnormality in need of a "cure"?
It's Not Easy Being Short
No matter what size you may be, it is not difficult to empathize with the plight of a short kid born into a society that seems to revere massive professional athletes and where advertising thrives on images of tall, leggy supermodels.
Short kids report in some studies that they fall victim to the teasing of their peers, while other research shows there are real differences in the way people are treated based on their height.
Nicole Costa, 17, who testified before the FDA after receiving what she refers to as "life-changing" growth hormone injections, remembers that at age 6, "The kids were like, 'Your legs aren't long enough. You can't play in these games. You don't run fast enough.' And, I couldn't reach the water fountain."
Being small in a tall world can take a serious psychological toll on a child, many experts feel. It's for that reason some doctors have been willing to prescribe the "off-label" use of human growth hormones in healthy but extremely small kids.
Doctors had predicted Costa would only reach a height of 4 foot 8 inches but with growth hormones she grew to 5 foot 2 inches and can personally attest to the fact that "being taller helps your self-confidence when you're in a crowd of people. It also helps you feel that you're not different, that you don't have to look up to people, that you can just blend right in."
While some experts feel the average 2 inches of height achieved by growth hormone injections may not be worth the price (about $30,000) — or the pain (six invasive injections per week for several years) — Costa disagrees. "To grow, even just 2 inches taller than 4-foot-8 is a big deal when it means that you can drive a normal size car," she says.
The Medicalization of Height
But while some believe growth hormones can relieve children of being teased or picked on, many worry giving short but healthy children growth hormones will only further perpetuate the stigma attached to small stature.
"The message we send to society is that any boy who is less than 5-foot-3 is ill and can avail themselves of a remedy. This is very dangerous as it causes people to make judgments of acceptability and normalcy rather than simply being open to variety and variation," explains John Tuohey, director of the Providence Center for Health Care Ethics in Providence, Ore.
"If shortness is medicalized today, what's next?," asks Dr. Jeffrey Bishop, associate professor of internal medicine at the University of Texas Southwestern Medical Center at Dallas.
Like Bishop, Dr. Mark Groshek, of the department of pediatrics at Kaiser Permanente in Centennial, Colo., worries once the door is opened for "healing" short people, "we will face increasing pressure to fix or change more and more things that are simply human characteristics and not illnesses."
Down the Slippery Slope and the Potential for Abuse
Experts also express concern FDA approval of human growth hormone for healthy but short children will weaken the restrictions that currently limit the widespread use of the treatment in children.
In the past, insurance companies would only cover growth hormone injections for children with diagnosed growth hormone deficiencies. So for parents of kids who were unusually short but able to produce growth hormone, the hefty price tag of injections put an "economic brake" on their decisions to go through with the treatment, explains Dr. Michael A. Levine, chairman of pediatrics at The Cleveland Clinic.
Should the FDA follow its panel's recommendations, those the economic brakes would be released and insurance companies would pick up the tab, says Levine. And parents, free from the high costs of the hormone injections, will be more likely to push to get their kids the treatment, he says.
Although Eli Lilly has proposed strict height restrictions, Levine says "this is clearly an example of Pandora's box." Despite Lilly's assurances, he explains, it is doubtful that the height predictions they propose will be followed by many physicians.
"Let's hope that doctors can discipline themselves to keep this treatment only for those in greatest need. But the profession's track record in this regard doesn't make me confident," adds Jonathan Moreno, director of the Center for Biomedical Ethics at the University of Virginia.
The measurements used to predict a child's height are flexible and can be massaged, Levine notes. Without a safeguard, "Parents and physicians will figure out ways to get around the recommendations, needlessly exposing children to risks for questionable benefit," adds Dr. Daniel D. Broughton of Community Pediatric and Adolescent Medicine at the Mayo Clinic in Rochester, Minn.
What are the risks of using the growth hormone? Some are known and some unknown, says Levine. In a small percentage of patients, the headaches developed during treatment may or may not go away once treatment is discontinued. Other patients may develop diabetes or arthritis while undergoing treatment.
But unknown is whether treating a child with growth hormones is increasing the risk of developing cancer as an adult, explains Levine. "While there is no evidence of risk today, doctors have not yet been prescribing this type of growth hormone for a sufficient number of years to be certain that they do not exist," he adds.
The FDA is expected to make its final decision later this summer. For many parents, children, and experts on both sides of the debate, the wait won't be a short one.