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The Door to Prescribing Growth Hormone to More Kids May Open, But Some Question the Motivation

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KANSAS CITY, Mo. - Karen Arkin couldn't help but flinch.

Someone had noticed her son, Jason, reading a Harry Potter book and asked, somewhat incredulously, "Is he in kindergarten?"

He was on the verge of third grade.

Jason's now on a catch-up campaign. Six nights a week at bedtime, his mother gives him a shot of human growth hormone in the thigh.

Now 9 years old and approaching fourth grade, Jason is 48 inches tall. That's the 5th percentile for boys his age. And that's after a little growth spurt, presumably caused by the hormone he's been getting since December.

A doctor determined that Jason's pituitary gland wasn't generating enough growth hormone, making him eligible for injections. Results vary, but the shots can add several inches to the height of such children.

Soon more kids may be getting injections under a fundamental change the U.S. Food and Drug Administration may make to its growth-hormone policy.

For now the FDA says children should have one of five conditions to be eligible for the injections. But it's considering opening the door to children whose only "problem" is that they're projected to be very short.

In June, an FDA advisory panel voted to authorize injections for children with normal hormone levels, provided the girls are projected to grow to no more than 4 feet 11 inches and the boys to no more than 5 feet 3 inches tall. The FDA has yet to make a ruling.

"I think most of us, when we heard the FDA was going to do this, were really shocked," said Carol Huseman, a pediatric endocrinologist at Children's Mercy Hospital in Kansas City. She's a member of an endocrinologists group that administers the hormone to about 1,500 children. Expanding the use of growth hormone "has been controversial for a long, long time."

She supports the proposed change but would be cautious in acting on it.

She and others are concerned that it reinforces a stigma around short people. And that, by virtue of its high cost, it may be a "fix" available only to wealthy people.

Over the years the hormone has been approved for one use after another - for children with insufficient hormones or kidney failure. It's used for children with Turner's syndrome and Prader-Willi syndrome, chromosomal disorders that disrupt the endocrine system. The FDA also has approved growth hormone for children born small for their gestational age who haven't caught up by age 2.

Theoretically physicians can prescribe growth hormone, like any other pharmaceutical, for "off-label" uses - for short children with normal hormone levels. The FDA proposal would condone such a practice and allow manufacturers to market the supplemental hormone for such uses.

The Human Growth Foundation is an education and advocacy organization in Glen Head, N.Y., that favors expanding the parameters. Its director, Patricia Costa, got involved because of her daughter. As a young girl, she never reached the 5th percentile on a growth chart, yet scored normal on all the diagnostic tests, Costa said.

When the child was about 6, a physician predicted she would max out at about 4 feet 8. The doctor prescribed growth hormone, and within three months, Costa's daughter had grown as much as she typically did in twice that time. Today, at 17, she's 5 feet 2.

"I've spoken to many families over the years who seem to fall into this classification," Costa said.

There's some lukewarm support among pediatric endocrinologists for revised standards. Huseman has seen the problems that confront some, but certainly not all, children who are small for their age.

"They can't do physically what they should be doing. They're babied and not looked upon as their age. Not much is expected of them."

Jason Arkin was in second grade when a bully found him and used recess and lunch time to belittle him, call him a midget and push him around. That prompted his mom to have him evaluated. It turned out his bone growth was two years delayed, and he wasn't making enough growth hormone.

Although Jason's 6-feet-1 father Steve was confident Jason would catch up in high school, as Steve himself had, Karen, at 5 feet, wasn't willing to wait.

"Being little, I thought if he's short, he starts in a one-down position," she said. "And it's worse if you're male."

According to the pencil marks on the kitchen wall in the Arkins' south Overland Park, Kan., house, Jason has gained 2 inches since he started the nightly hormone injections in December.

Jason's doctor, Huseman, favors making growth hormone available for very small children with normal amounts of growth hormone. She anticipates that, should the FDA change the regulation, she would prescribe it to a select few.

"I think if a child is destined to be extremely short and socially is having difficulty, why not? It does work."

Growth hormone has its limits, however. Studies in the United States and Europe generally have found that short children with a normal amount of growth hormone benefit less than those with a hormone deficiency - generally around 2 inches, in some cases up to 4.

Even 2 inches is enough for Paul Kaplowitz, a widely respected pediatric endocrinologist and chief of the department at the Virginia Commonwealth University School of Medicine in Richmond.

"We should focus on kids who are going to end up well below normal," he said. "The difference between 5 feet 3 inches and 5 feet 5 inches is probably worthwhile."

In fact, though, a revised FDA standard would encompass very few additional children, Kaplowitz said. Growth hormone supplements go overwhelmingly to boys, and Kaplowitz said most of the boys he sees are projected to reach at least 5 feet 4 inches, above the limits of the proposed guidelines.

Edward O. Reiter, a leading pediatric endocrinologist and a professor at the Tufts University School of Medicine, agrees that a change in FDA policy would be appropriate. However, he noted, growth hormone should be used very sparingly among hormonally sufficient children.

"Just because a child is a little below the bottom of the growth chart, I don't think you should say he's a candidate for hormone treatment. You want to choose carefully."

If a child is very small, has growth potential and the family and child are having emotional and social problems because of the child's small size, Reiter thinks hormone injections are appropriate.

Taking a more circumspect position is Arthur Caplan, who chairs the medical ethics department at the University of Pennsylvania in Philadelphia.

"You have to take the shots five or six times a week. It's tough for a kid to do that, and you have to do it over many years. Some kids don't get any growth for all that intervention. The ones that isn't going to make a huge difference in their self-image."

Each injection reminds a child, " `You're short, you're short, you're short.' I'd like to see society deal with height by de-emphasizing (it) rather than resorting to a pharmaceutical response to something that's normal."

In addition, Caplan worries about slippery slopes.

"It opens the door toward saying that anyone who's below average is a medical problem...transforming it into a disease," he said. "We've seen that happen with premenstrual crankiness. There are some things in the realm of normal that drug companies have started to medicalize to move products."

Allen W. Root, professor of pediatrics at the University of South Florida School of Medicine in Tampa, agrees. Although the proposed change is fairly narrow, he predicts it would be just the beginning.

"Do you know how many kids at the 25th percentile come in wanting to be at the 50th percentile? Once it's out there, anybody can use it. And whether (drugmaker Eli) Lilly says they're going to ration it or not, that's not going to last two minutes."

While he sees the value in supplemental growth hormone for a child with a deficiency, like Jason Arkin, Root said, "I just don't like to take normal children and do things to them."


(c) 2003, The Kansas City Star. Distributed by Knight Ridder/Tribune News Service.

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