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Million-dollar babies: Families with children with hemophilia face high health care costs

Drake Stallings, 2, was diagnosed with moderate hemophilia when he was about 5 weeks old. Since that time, his family has learned how expensive and, at times, stressful his diagnosis can be.
by Jaclyn Cosgrove Published: April 28, 2013

Drake Stallings hates the “pokey medicine.”

It's the name the 2-year-old boy has given to the weekly dose he gets through a needle of a drug that helps his body clot his blood.

Ask him why he gets the medicine?

“Phila-Phila,” he says.

That's 2-year-old for “hemophilia.”

Whereas adults might overcomplicate it, Drake just knows that once a week, his parents have to poke a needle in his foot and that it hurts.

What Drake doesn't likely understand is that the medicine costs $1,200 per week, with yearly costs ranging from $100,000 to $1 million, depending on how severe a person's hemophilia is.

“People have tagged children with bleeding disorders as ‘million-dollar babies,' — because they are,” Drake's mother, Beth Stallings, said.

Bleeding risk

Hemophilia is a blood disorder in which a person's blood does not clot normally, according to the National Heart, Lung and Blood Institute.

People with hemophilia run the risk of suffering from excessive bleeding, bleeding in their joints and bleeding in their brains.

The medicine that Drake takes can help with that.

Once a week, Drake receives an infusion of clotting factor that helps replace what his blood lacks, according to the institute.

But the medicine comes at a serious cost, even though Drake's family is considered lucky, for one, because they're insured, and for two, because of Drake's diagnosis. Drake has moderate hemophilia, meaning his blood has between 1 and 5 percent of its normal clotting factor.

For children like Drake, medicine can cost between $100,000 and $300,000 each year.

But like many diseases, there's a range of how severe hemophilia can be. Children with severe hemophilia have to take their medicine more often than Drake, and their families might end up paying more than $300,000.

Additionally, about one-third of people with hemophilia will develop an antibody, called an inhibitor, to their medicine, according to the Centers for Disease Control and Prevention. This means their body will view their medicine as a foreign substance that it needs to be protected against.

Developing an inhibitor is one of the most serious and costly complications of hemophilia, according to the CDC. This group of people could end up paying $1 million each year for medicine they cannot live without.

Treatments improve

Beth Stallings often hears doctors or nurses say that it has been a while since they've seen a patient with hemophilia.

“And I think, ‘Yeah, that's because they all died,'” she said.

It's a harsh reality, but the medicine, albeit expensive, can save lives that were once lost.

In the 1950s and 1960s, many people with severe hemophilia, and some with mild or moderate forms, died in childhood or early adulthood, according to the National Hemophilia Foundation.

Michelle Rice, the director of public policy at the foundation, said that over the past 40 years, people with hemophilia have seen major developments in treatment.

Several years ago, the treatment was whole blood, and hemophilia patients would spend days in the hospital receiving transfusions, sometimes packed in ice to lower swelling and stop bleeding.

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by Jaclyn Cosgrove
Medical and Health Reporter
Jaclyn Cosgrove writes about health, public policy and medicine in Oklahoma, among other topics. She is an Oklahoma State University graduate. Jaclyn grew up in the southeast region of the state and enjoys writing about rural Oklahoma. She is...
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