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Twenty-three year old Alex Ell was diagnosed with hemophilia at birth.  Hemophilia is a rare genetic bleeding disorder that results in excessive bleeding, occurring spontaneously or as a result of an injury.  Bleeding episodes cause pain and damage to joints, muscles and organs. These episodes are treated with an intravenous infusion of blood clotting products to replace the missing or deficient protein needed for blood to clot.

The treatment for hemophilia is very expensive.  In 2010, Alex’s treatments cost $863,000.  Alex’s current insurance had a cap of $1.5 million, meaning that he would have had to find another insurer if the health care reform law hadn’t eliminated such insurance caps.  It wouldn’t have been the first time, either.  Alex’s family has switched insurance plans three times due to his hitting lifetime caps, which ranged from $1-1.5 million.  Each time he was forced to get new insurance, the plans got less desirable, with higher premiums and deductibles.  Fortunately Alex’s monthly premiums are covered by an outside program, but there still has to be a $1,500 yearly deductible on his current insurance.

The health care reform not only saved Alex from hitting a fourth lifetime cap, but also allowed him more time to find a job with benefits after college.  He said that finding insurance had been on his mind “since early high school,” but thanks to the new laws he was able to stay on his mother’s insurance after graduating from college until he is 26 years old.  His current job is part-time and doesn’t offer benefits, but now he has three years to work up to getting a position where he’ll be covered.

Alex states that the two changes that help him and others with chronic illnesses the most are the elimination of lifetime caps and of insurance rules that deny people coverage due to pre-existing conditions.  While Alex was lucky enough not to be denied for the second reason, many people with bleeding disorders struggle with finding an insurance that will cover them if they can’t get into a group plan or if they reach their lifetime caps.

Finally, Alex says that it’s a pity that people like him often have to forego their passions and instead choose jobs solely for their insurance coverage. “It would be really nice [if people with hemophilia] could actually find a job or open a business without looking at benefits” he says.

By: Rachael Prokop

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