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.
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.
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.
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.”
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.”