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For some, the teenage years are the time to dream. But Leland Smith, who has severe hemophilia A, has always had to be firmly grounded in reality. “[Careers] like movie star or athlete aren’t even in the books,” he says wistfully.

Leland’s hemophilia comes with a complication called an inhibitor: a resistance to the medication that prevents his bleeds. This makes his treatments even more difficult and expensive, and sets him apart. “Even when you’re amongst other hemophiliacs… you’re still abnormal from the rest of them,” he says.

In an interview conducted before the health care reform, he expressed concern about leaving his parents’ insurance. “Last year my medical bills were about 3.5 million dollars,” he said, “and they can even exceed that if I have enough problems.”

With the future of the health care reform in doubt, numbers like these are still at the front of many people’s minds. “If I could sit down with the President,” Leland said, “I think I would just try to convey to him how very important it was that health insurance is made readily available to all people with no lifetime caps.” People like Leland can hit lifetime caps over and over again, and finding insurance that will accept pre-existing conditions is a struggle.

For now, there is relief at the new laws that prevent lifetime caps and other barriers to treatments. But the worries are still there. Leland knows that voices like his are important to show the world the difficulties that hemophiliacs face: “We don’t have any big celebrities with hemophilia… so we have to get out there and make ourselves heard.”

By: Rachael Prokop

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