Some states working to help hemophiliacs

Reid Morgan was a six-year teacher in love with his job at Orem High School, when, as he says, "boom" — everything changed.

Born with severe hemophilia, Morgan lacks clotting factor VIII and must self-infuse the protein into his vein to stay healthy.

Whether synthetic or manufactured from human blood donors, factor is incredibly expensive, with annual average costs ranging from $50,000 to $300,000.

For Morgan, his three infusions a week quickly add up to between $175,000 to $250,000 a year.

It was too much for Morgan's insurer, which eventually wrote blood products out of its policies four years ago.

"My world fell apart at that moment," he said.

Morgan hired an attorney and eventually forced the school district's insurance plan to pay his benefits for another year while he looked for a different job.

He wound up in his native Washington, where the district he works for offers an insurance that covers his medication and has no life-time cap. "I'm set. Of course I thought I was set in Utah, but apparently I wasn't. Basically, I left the state because my insurance wasn't good enough. I was very bitter at the time."

Susan Soleil, executive director of the Utah Hemophilia Foundation, said Morgan's story isn't that uncommon.

As companies continue to look for ways to cut costs and keep premiums low for their employees, it's becoming a frequent tactic to switch to plans that have more restrictive coverage.

And if it is offered, the benefit is often capped at $1 million, which a person with hemophilia reaches quickly.

Medicaid, for a schoolteacher with young children and home, is not an option in Utah — unless Morgan was prepared to give up his job and sell the house.

"Something has to be done," said Soleil. "Utah lost an incredibly funny and excellent science teacher. Utah students lost out."

While Utah's public policymakers have formed a subcommittee to look at possible ways to help people with bleeding disorders, other states have already taken action.

Similar to the school district in Washington, Indiana's high-risk insurance pool has no life-time cap, even though several lawmakers tried to get a cap put in this year.