Patricia Costa, now the executive director of the Human Growth Foundation, an advocacy group, sees the FDA's decision on July 25 as evidence of "a system that works" to allow children to grow, literally, to their full potential. On the brink of the womanhood that her mother had imagined, Nicole Costa was just glad that she didn't need to stand on a box to reach the FDA's microphone.
For Lilly, the FDA decision is expected in the next five years to bring an additional 40,000 children and their families to the drug counter for treatment that costs $10,000 to $30,000 a year. The FDA's decision will increase the pressure on health insurers, which have been reluctant to reimburse families for these treatments. Such treatments could reach $18 billion annually, according to one 1998 estimate.
While Lilly is a clear winner in the FDA decision, patients and doctors are likely to benefit as well, said Dr. Pinchas Cohen, a pediatric endocrinologist at the University of California, Los Angeles. "This is going to make it easier for pediatric endocrinologists to practice the kind of medicine they think they should," Cohen said. "People complain the insurance companies dictate how we can practice medicine: This decision will make it possible for us to do the right thing by our patients."
But others view Humatrope's approval as another disturbing move toward using medicine to treat societal ills that could be dealt with differently. Extreme short stature -- defined as 4 feet, 1 inches for a boy or girl age 10, or less than 4 feet, 11 inches for an adult woman or 5 feet, 3 inches for an adult man -- is not in itself a disease.
Steve and Lisa MacChesney's 9-year-old daughter, Brittany, appears on course to fit the height profile for the FDA's new decision. At school, Brittany's 4-feet 1-inch frame has drawn taunts and bullying. But MacChesney, who owns several martial arts schools in the Orlando, Fla., area, and Lisa, a middle-school teacher, marched to Brittany's school instead of a doctor's office to solve the problem.
Steve MacChesney said he had used the same self-esteem and social skills he fosters in his schools to boost his daughter's self-confidence, rather than focusing on her height. And he and his wife started a Web site dedicated to stamping out bullying. "I never thought about human growth hormone for her," he said. "I always look at more natural responses before I go to the medicine side. ... I'm a big proponent of self-esteem building."
In a 1999 editorial in the New England Jour-nal of Medicine, endocrinologist Sharon E. Oberfield called into question the use of growth hormone for the use of "idiopathic short stature," noting that for many such children, years of treatments can yield very modest results.
"Can we ... continue to practice medicine without responding to society, parents or our own biases?" asked Oberfield, of the Columbia University College of Physicians and Surgeons in New York. "I suggest we can practice and resist the pressure," she added, "and that we should heed the advice of the Greek philosopher Epictetus, who stated that 'reason is not measured by size or height but by principle.' "
The Los Angeles Times is a Tribune Publishing newspaper.
After 10 years of shots, one child grows up
For some parents, the decision of whether to get human growth hormone treatments for their children is made easier because their insurer will pay for the procedures. But others anguish over the decision.
When Stephen Tucker of El Cajon, Calif., was 3, doctors diagnosed him with growth hormone deficiency and projected an adult height of less than 4 feet. Even then, his mother, Teresa, said she had doubts about proceeding with daily shots of a powerful hormone. And even at 3, Stephen had his own opinion of the treatment: He disliked the shots so much that his mother frequently had to fetch him from beneath a bed.
At age 13, however, after 10 years of human growth hormone treatment, he stood across from his mother's 5-foot-1-inch frame and, for the first time, looked down on her. He was 5 feet, 2 inches, and he told his mother, "Mom, I'm taller than you. And if this is all the taller I ever get, it's a darn sight better than 4 feet." His mother cried.
"Society is so focused on stature that I didn't want him to have to live his life wondering what if ... what if my mom and dad had given me the opportunity to grow normally?" said Tucker, whose son, now 18, is 5 feet, 7 inches tall. "I did not want to have to answer that question."
-- Los Angeles Times