The Kansas City Star

Say your son or daughter is short. Not just a little short, but shorter than 99 percent of kids his or her age. As an adult, your son might only reach 5 feet 3 inches. Your daughter, 4 feet 11. How much would you spend per inch to make him or her taller? One thousand dollars? Ten thousand?

According to research published recently in The Archives of Pediatrics & Adolescent Medicine, the average price tag for using growth hormone to add two inches of height to children with little else wrong other than natural shortness is about $100,000.

More and more parents are willing to foot the bill.

“Some children added two inches. Some added three or four. Some added none,” said physician Joyce M. Lee, who examined Food and Drug Administration data to conduct a cost-effectiveness study at the University of Michigan. “Per inch, it comes to $52,634.”

For years, growth hormone has been used without controversy to help increase the height of children suffering medical problems from hormone deficiencies to genetic disorders.

In such cases, growth hormone injections replace what the body lacks. It allows children to grow an average of three inches, and even more.

But since 2003, the debate over the use of growth hormones in otherwise healthy children has intensified. That year, Indianapolis-based Eli Lilly & Co. received approval from the FDA to use its version of human growth hormone, Humatrope, in children diagnosed with idiopathic (arising from unknown causes) short stature. California-based Genentech received similar approval in 2005 for its drug, Nutropin.

Technically, it made only children in the lowest 1.2 percentile of the growth charts eligible for a diagnosis for I.S.S.

“When we talk about children with idiopathic short stature … we’re talking about the shortest of the short,” said Eli Lilly spokesman Gregory Clarke. “They are equally as short as children with growth hormone deficiency or Turner Syndrome (a chromosomal disorder). I think it is most important to look at the patient need.”

No one knows how many children take growth hormones but demand for the drugs has increased, spokesmen for Lilly and Genentech said.

Last year The New York Times reported that Pfizer sold $736 million of its growth drug Genotropin, up 53 percent. Eli Lilly sold $430 million of Humatrope, up 16 percent. Genentech’s growth drug sales were up 10 percent to $345 million. Other drug companies experienced less dramatic yet still significant increases.

Physician James L. Casey, chief of pediatric endocrinology at the University of Kansas Hospital, said growth hormones are “a wonderful medication when used appropriately.”

But Casey and others physicians fear that, all too often, it is not being prescribed or used properly.

“There’s no question that the general trend is more, more, more,” endocrinologist Adda Grimberg, of Children’s Hospital of Philadelphia, told The Times. “Higher doses, more indications. It works; it’s safe; let’s try it. And we are feeling that pressure from all sides, not just the pharmaceutical industry but also from society, because many parents want their children to be taller.”

Instead of being given to children with something wrong, hormone therapy is being prescribed for children who, genetically, are just naturally very short. In them, the drug – which can be used for an average of five to six years – adds only an inch or two at a very high cost. Like all drugs, it has potential side-effects from headaches and abdominal pain, to hip problems and, most severely, though rare, increases in the pressure on the brain.

Joseph Cernich, director of endocrine clinical services at Children’s Mercy Hospital, said treating short children with growth hormones has long been a thorny issue, even before it was approved for I.S.S.

Doctors traditionally treated short stature because they believed it exacted a harsh psycho-social toll: being bullied, terrible self-esteem, miserable childhoods that led to unhappy lives.

Research, however, increasingly shows that short people “as adults enjoy life as much as everybody else,” Cernich said.

“I can guarantee that there are kids on it that don’t need it,” he said. “There are some doctors who believe that if they can do it, they should do it. Most doctors don’t take that approach.”

Cernich has not seen a surge of parents asking for him treat their children. But “there is that demand and there are people paying for it.”

Unlike Cernich, Casey believes more people are asking for the therapy.

“Parents desire too have taller children.”

At 4 feet 11, Sally Wilson-Pfeffer of Prairie Village, Kan., is one of them. Until recently, her son, Larry, 18, had given himself a daily injection of growth hormone. He began the injections when he was 9, and it was projected that his adult height might be no more than 5 feet 2.

Larry wasn’t worried about it. But his mother was.

“It was terribly important to me,” Wilson-Pfeffer said. “I’m only 4 feet 11. I think height is discriminated against terribly. I know that from first-hand experience. I did not want that for my son.”

Because they chose to be part of a clinical study for a pharmaceutical company, the Pfeffers did not have to pay the approximate $10,000 to $30,000 a year it costs for growth hormone injections. Had the drug not already been paid for, Wilson-Pfeffer said she would have found a way to pay for it herself.

“I just wanted to give him an extra little boost in life if I could,” Wilson-Pfeffer said. “Since I could, I did.”

She did not do the same for her daughter, Katie, now 16 and a 5-feet-1-inch junior at St. Teresa’s Academy, because she believes that girls are not discriminated against as severely for their height.

Larry, a senior at Rockhurst High School, is 5 feet 6 and physicians project he may grow another inch or two. His father is 5 feet 10 inches tall.

“From my standpoint, in second grade, the worry was more my parents, my mom,” he said. “For me, I’ve never really had a problem with my height. I’m a confident individual, so I never really had any problem making friends or anything because of my height.

“But looking back on it, (growth hormone therapy) might have attributed to my confidence,” he said. “I think it was worth it.”

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Human Growth Hormone:

Cost: $10,000 to $30,000 a year. Insurers cover some to none of the cost. Doctors estimate treating the 400,000 U.S. children ages 4 to 15 who are eligible for the therapy would cost about $40 billion.

How it works: Growth hormone is a protein, produced by the pituitary gland, that spurs growth by stimulating the ends of bones known as growth plates, responsible for bone elongation. It also stimulates another hormone called insulin-like growth hormone which indirectly stimulates the growth of bone, muscles and other tissues.

Who uses growth hormone: Many people, typically those born with growth hormone deficiencies, genetic disorders or those whose growth is stunted for unknown (idiopathic) reasons.

Long Term Effects: Unknown.

Average Height U.S.: Adult males: 5 feet 9 inches. Adult females: 5 feet 4 inches.

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