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‘Million-Dollar Boy’ Underscores Health Debate

When is a child's health condition simply too expensive to treat?

Ideally, no cost is too high. No treatment is too expensive.

But in the case of 4-year-old Dylan Brabon of Phoenix, Ariz., the limit is $2 million. Born with a rare form of a rare disease, Dylan reached his lifetime insurance cap in June. And he hasn't even entered kindergarten yet.

"I'm not sure where we go from here," said Michelle Brabon, Dylan's mother.

Dylan was born with severe Hemophilia B, a rare form of a rare bleeding disorder. His blood does not clot normally. Besides the cost of doctor and hospital visits, a typical dose of blood clotting medicine for Dylan is about $7,000. If Dylan gets even a minor bump or bruise, he must take dozens of doses per day.

"They (doctors) told us at the end of his first hospital stay he was our million-dollar baby because he was on track to put up a million dollars in hospital bills," Brabon said.

Advocates in the hemophilia community say Dylan's case reflects a serious flaw in the health care system. Currently, insurance companies are allowed to administer caps on lifetime coverage. The caps can start at $1 million.

"Even though hemophilia affects a small amount of the community it is such an expensive disease for the family," said Alexis Christensen, Executive Director for the Arizona Hemophilia Association. Christensen says the average hemophilia patient accrues medical costs of $250,000 per year.

Under current health reform bills before Congress, insurance caps would be lifted completely in the year 2018. Christensen says that's not soon enough. A national lobbying firm for hemophilia patients is trying to persuade lawmakers to immediately raise the minimum cap to at least $5 million.

The alternative for families maxed out on their insurance is to turn to state aid, Christensen said.

For now, the Brabon family is getting advice from hospital financial counselors and local charities. Christensen says money should not have to be a worry for the Brabon family.

"I think parents of hemophilia patients should have to worry about helping their children be successful in school, to get skills they need to allow them to take care of their disease in their lifetime. They shouldn't have to worry about fighting the insurance company," Christensen said.

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