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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

In the 1970s, medicine became available that allowed people with hemophilia to be treated outside the hospital and take their medicine at home. However, there was a catch.

“When this came out, they would tell you that there was a very good chance that people would get hepatitis,” Rice said.

Even though there was a high risk of contracting hepatitis, some people with hemophilia felt it was worth it. The treatment meant they had more freedom, and the side effects of hepatitis were livable, she said.

But in the 1980s, the fact that people with hemophilia could contract blood-borne viruses through their treatment became a huge problem.

During this time, the United States was introduced to the AIDS virus. About half of the people in the U.S. with hemophilia would eventually become HIV-positive, and thousands would die, according to the foundation.

Since that time, new drugs have been developed that no longer carry the risk of contracting blood-borne diseases. The process is complicated, though, and points to the reason why medicine is so costly.

“The reason why it's so expensive, first of all, is because of the all the processes you have to go through to create these products,” Rice said. “But even more so, there are only 20,000 of us in the U.S. using this product, so you've got a very expensive product, and they have very few, relatively speaking, people to spread that cost over.”

Paranoia concern

One of the common misconceptions is that people with hemophilia can die from a paper cut. This is largely not the case.

For Drake, a scraped knee or a small cut on his finger won't likely be a big problem.

But for example, when Drake was 1, he fell from a barstool and bumped his head on concrete. What would have been an injury for any child was an emergency room visit for Drake.

The blood that pooled in Drake's head because of the fall had to come out somewhere. Over the next few months, it would drain through his face and stay around his eyes.

It's hard not to feel paranoid when you're in the grocery store or at the mall, and you have a 2-year-old boy with two black eyes.

Sometimes, people would approach Beth Stallings, assuming Drake was a victim of child abuse.

“They'd say, ‘Oh my God, look at the bruises on his eyes,' and just the looks they would give you, back and forth to the child and to you, is enough that you have a feeling that you're like, ‘Oh, we're OK,' and then I feel the need to explain he has a bleeding disorder and this is what hemophilia looks like,” she said.

For the most part, though, Drake lives the life of any other 2-year-old. Looking at Drake, you wouldn't assume he's sick.

He's an energetic and sweet-natured boy who turns 3 on Friday. He enjoys playing games on the family's Wii game console or watching a movie with his 5-year-old brother Talen.

“He's the picture of health,” Stallings said. “There's nothing superficial that's different with anyone with a bleeding disorder. It's all internal, until something like the bruises are exposed.”