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Boy, mom stand tall against disease as insurers balk

Published in the Home News Tribune 10/25/98

By RICK MALWITZ STAFF WRITER

In summer 1996, even drinking a glass of water was too painful for Gideon Sofer to stomach. He was 12 years old, but at 45 pounds he didn't look it.

"He was wearing size 7 pants, and they kept falling down his waist," said his mother, Linda.

The Highland Park boy had Crohn's disease, an inflammatory bowel disorder that afflicts 1 million Americans, including 100,000 people under the age of 18. Surgery in January 1997 to remove a damaged portion of his small intestine took away the pain of eating and drinking, and drugs have kept the disease under control since then.

A more permanent concern was Gideon's lack of growth, a side effect found in about 10 percent of children with Crohn's. At 4 feet 2 inches and 45 pounds, he was a wisp of what he should have been.

The solution was a prescription of human growth hormone, which Gideon injects into himself every night before going to bed. The result has the boy and his mother calling the hormone "a miracle drug."

In a year and a half, he has grown about 7 inches and doubled his weight. At 4 feet 9 inches, he is still small for his age, but he's catching up.

"Sometimes I'll pick him up and see him in a crowd of children and not recognize him as my little boy," said his mother.

"His growth has been amazing." However, the Sofers have a fresh problem, one that illustrates a dilemma in modern medicine: Wonder drugs do wonders, but who will pay for them?

After paying $36,000 for more than a year's worth of the hormone, the Sofer's insurance company, HIP Health Plan of New Jersey, discovered last month it was paying in error. In a Sept. 18 letter, HIP's parent company, Pinnacle Health Enterprises, informed the Sofers they were responsible for a 50 percent copayment.

Then, when Linda Sofer was wondering how she could come up with $18,000, she received a letter from HIP on Sept. 25 with good news and bad news. The good news was that HIP would pay the entire $36,000 it approved by mistake.

The bad news? From then on, the Sofers would have to pick up the entire tab. If they could not pay, they could apply to the state-funded Children's Catastrophic Illness Fund Commission. Or, as the letter from HIP suggested, "Your local Elks club may also serve as a valuable resource."

The notion of applying for charity care or appealing to the Elks offended Linda.

"It's so demeaning to go begging so your son can get better," she said. "You can mess with me, but don't mess with my kids."

Fortunately, for now, she has an alternative, though she fears it may not be permanent. She left the HIP program and obtained, through her employer, coverage with Aetna US Healthcare. That put her on another emotional roller-coaster.

Her original understanding was that US Healthcare would pay for the hormone. But, on Wednesday, the day after she received a fresh shipment of the hormone, the US Healthcare medical director informed her in the morning that coverage was being denied. One of Gideon's nurses appealed to US Healthcare, and by Wednesday afternoon coverage had been granted.

But she and her son are not out of the woods yet.

More uncertainty

Linda Sofer works for a New York City hospital, in a department where the hospital recently has laid off staff to trim costs. If she loses her job, and coverage with US Healthcare, she would return to coverage through her former husband, who according to their divorce settlement is responsible for medical insurance.

However, because he is self-employed, his plan is governed by the New Jersey Individual Health Coverage Program, which has strict rules affecting coverage of 1.02 million individual and small-employer customers. HIP can offer no more, or no less, than the state mandates.

According to those mandates, injectable prescriptions are not covered, except for injectable insulin. HIP was abiding by the rules when it informed the Sofers it no longer would pay for growth hormones.

A spokeswoman for HIP said the company would not discuss why payments were approved in the first place.

In a prepared statement, Amy B. Mansue, president of the HIP Health Plan of New Jersey, said, "It needs to be understood HIP-NJ has not taken an arbitrary stand and that our actions are based on the terms of the state-prescribed contract."

When it ceased offering payment, "HIP did nothing wrong," said Wardell Sanders, the executive director of the board that oversees the individual coverage program.

Sanders explained the program is designed to control costs, to give individuals and employers of companies with fewer than 50 employees access to reasonably affordable health insurance.

Sanders said a mandate to cover the cost of growth hormones for children with Crohn's disease would be considered if someone such as the Sofers made an appeal. The board then would consider the cost to all carriers, frequency of use and medical need.

"If we're talking about just one kid, maybe it's something we would add," said Sanders.

To Linda Sofer, HIP is playing with words. She noted that chemotherapy for cancer patients technically could be classified an injectable prescription. But it is not, and coverage is allowed.

She also pointed out that her son's willingness to help himself has saved HIP money. Five nights a week, he is fed overnight via a nasal-gastric, or NG, tube, which he inserts from his nasal passage to his stomach. An expensive and unhealthy alternative would be for doctors to make a surgical incision in his stomach area, to allow for feeding.

He also gives himself nightly injections of the hormones.

"He has taken control of his treatment," said his mother.

What complicates the issue of human growth hormone for Gideon is that hormones are not recognized as a cure for Crohn's disease. They only treat a side effect.

Many parents seek human growth hormone solely for their child to be taller. Adults use it in the belief it stalls effects of aging.

The use of the hormone for people with Crohn's disease is limited, because only about one-third of children with the illness fail to grow, according to literature published by the Crohn's and Colitis Foundation of America.

Genentech, the manufacturer of Nutropin AQ, the specific hormone Sofer uses, does not list Crohn's as one of its prescribed uses.

In a letter to insurance companies, Dr. Max Salas, the boy's pediatric endocrinologist, left room for mystery: "Crohn's disease interferes with growth by several possible mechanisms, some of them not well understood."

However, the boy's extraordinary growth, Dr. Salas added, "Indicates very clearly the effects of growth hormone."

Physical proof

What Linda Sofer understands is that her son has grown 7 inches, doubled his weight in a little over a year, and gone from wearing size 7 pants to size 14. He has increased muscle mass and bone density, and, apart from mouth ulcers that accompany common colds, the Crohn's disease is under control, thanks to a daily cocktail of 15 pills and vitamins, and his use of the NG tube, in addition to the growth hormone.

His father is 6 feet tall, and his mother is 5 feet 3 inches.

"Our goal for Gideon is set at 5-foot-6," said Linda.

His mother has endured much since the boy was born. When he was 8 days old, she noticed what appeared to be molars in his mouth; they were molar-sized canker sores. He has been hospitalized six times.

"He had a difficult infancy. He was never a happy camper," she said.

The disease, with no known cause or cure, affects the digestive tract from the mouth to the rectum. In Gideon's case, it was at its worst when the opening in his damaged small intestine shrunk to the width of a pin -- making the ingestion of a small amount of food or water painful.

With the success of surgery, and the combination of pills, vitamins, NG feedings and the growth hormone, his mother fears what the elimination of the hormone would cause.

Her attitude: "Everything's working. Don't change a thing."

Today he plays soccer on his middle school team and saxophone in the band. In a year, he has pared his time in the 1-mile run from 11 minutes to, he reports with precision, "Seven, fifty-eight, point nine."

Gideon can talk with similar precision about his illness. When Dr. Richard Strauss, his primary physician, calls to update the Sofers, Linda often hands the phone to Gideon. Doctors often have used Gideon to school other children on medical procedures, such as how to insert the NG tube.

His career aim is to go into medicine. A more immediate goal is to convince the United States Citizens Stamp Advisory Committee to issue a stamp, raising awareness of Crohn's disease the way stamps have raised awareness of AIDS and breast cancer. "I kind of want to be an inspiration to help other people in my position," Gideon said.

Source: Home News Tribune 1998

URGENT ACTION: Gideon was forwarded an email from one of his close friends not too long ago which pointed out a extreme medical case in which the health insurers are refusing coverage to a patient fighting for her life. A lady by the name of Sue requires a combined, pancreas, stomach, and small bowel transplant due to a car accident. The following information was taken directly from their website:

"Sue is kept alive with TPN and J-Tube feedings into her bloodline and small bowel respectively. These feedings cost almost $400.00 per day and she has had them around the clock since mid September 1997. All of her physicians now believe that Sue will clearly benefit from a combined small bowel, stomach and pancreas transplant. Although this procedure is not done every day the scientific evidence suggests that in all probability Sue could be returned to a ÒnormalÓ life if the surgery is successful."

Her health insurance company however, has refused to pay for such an operation which can indeed, save her life. To take action and learn more about this utmost urgent issue, take a quick visit to: http://www.savesuzanneslife.com.

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