Growth hormone bill to punish abusers, aid children

Brian J. Howard
The Journal News

In 2004, Jason Balsan of Dobbs Ferry didn't even register on the growth charts.

Born four years earlier at 2 pounds, 1 ounce and just 14 inches from head to toe, Jason was smaller even than his twin sister Rebecca, who was 3 pounds heavier and 3 inches taller.

It took 13 months and visits with a battery of specialists at Westchester Medical Center before a geneticist walked into Jason's room, looked him over for five minutes and made a spot diagnosis: Russell Silver syndrome.

The medical treatment that has been most crucial in his battle with RSS was nearly made a whole lot less available by legislators.

RSS, a genetic condition that affects roughly one in 100,000 people, is characterized by short stature, a high forehead and asymetrical development. RSS kids often require a feeding tube implanted in their stomachs to ensure they consume enough calories. For many, eating is an entirely learned behavior, said Jason's mother, Judith Balsan.

By age 4, following surgeries to correct reflux and to open his stomach muscles to speed digestion, Jason weighed 16 pounds and had done all the catching up he was going to do. It was time for growth hormone.

Four years of daily injections, prescribed by a specialist at Mount Sinai School of Medicine in Manhattan, has put him on the growth charts, though just barely.

"Jason couldn't run like other kids. He couldn't climb like other kids," his mother said.

But now he's out there playing soccer with kids his own age. He's starting Little League soon, and not in a special-needs program. He may not be the best player on the team, Balsan said, "but he'll be out there with his friends, and at least he can do it."

Balsan and her husband are Queens natives and die-hard New York Mets fans. They attend games regularly and plan to take Jason and Rebecca to see Shea Stadium before it is torn down.

So they took notice when Congress started calling professional baseball players to testify at hearings on the use and abuse of performance-enhancing drugs, including human growth hormone.

The same precious substance that gave Jason the muscle tone to practice karate alongside his sister and parents was being used in dangerously high doses by millionaire athletes seeking an advantage on the field.

Those hearings reached a crescendo in January following the release of former Sen. George Mitchell's report into the prevalence of steroids and growth hormone in Major League Baseball.

Yankee pitcher Andy Pettite admitted trying growth hormone during a stint on the disabled list. Former teammate Roger Clemens faced similar accusations but denied doing so under oath.

The hearings nearly resulted in legislation that would have driven up the cost and increased the hardship in obtaining growth hormone for thousands of children like Jason. A bill sponsored by Sens. Charles Schumer, D-N.Y., and Chuck Grassley, R-Iowa, would have put growth hormone in a class with anabolic steroids and hard-core drugs like LSD and amphetamines.

Under heavy pressure from parents and medical experts, that language has been dropped.

Schumer said the point of the bill was to punish the bad apples without restricting any sick child's legitimate access to HGH, and the compromise under way will ensure that. Grassley told USA Today that legislators did not anticipate the bill's potentially negative effects until parents of children with growth disorders spoke out.

A new draft under consideration would prohibit growth hormone for performance enhancement and make it a federal crime to possess it without a prescription. Currently, possession is legal. A vote is expected in coming weeks.

"It does make me very frustrated with them," Balsan said of athletes who misuse growth hormone. "These guys have the ability to get the best personal training, the best medical care that's legal. They've got the best tools and ability to do the best for themselves. They don't need to be doing this."

When the original legislation looked like it was on the verge of passing, the Chicago-based nonprofit Magic Foundation, which represents families confronting more than 170 growth-related disorders, spearheaded a grass-roots lobbying campaign to change legislators' minds.

Chief Executive Officer Mary Andrews, whose own son overcame a hypopituitary condition with the help of growth hormone, said the foundation expanded its focus from education and support to lobbying senators in person in early April.

"I said you can't do this," Andrews said. "You haven't given people the opportunity to hear our side of it. You have no idea what growth hormone does for the children that really need it and the adults that really need it."

"Punish the abusers, not the children" became the organization's mantra as legislative updates cropped up daily on its Web site. The Lawson Wilkins Pediatric Endocrine Society, the Endocrine Society, the American Association of Clinical Endocrinologists and the Turner Syndrome Society also opposed the change.

Dr. Moshe Weiss, a pediatric endocrinologist in Spring Valley, said his patients don't see dramatic increases in muscle mass like professional athletes see from growth hormone because they are taking far smaller doses.

That's because growth hormone is used medically as a supplement for what the body cannot produce on its own. Higher doses pose the threat of overgrowth of organs, particularly the heart, and other health problems.

According to the World Anti-Doping Agency, the problems include muscle, joint and bone pain; hypertension and cardiac deficiency; and accelerated osteoarthritis.

Weiss said he thinks Congress is somewhat misinformed about growth hormone since most of the drug-aided enhancement seen in professional athletes comes from anabolic steroids.

The latest update on the Magic Foundation Web site asks parents to stay on their guard, reminding them nothing is set in stone until the revised bill becomes law.

"All we're doing is praying and hoping that Sen. Schumer's office will agree to it, and then we can move forward and get the bill passed," Andrews said.