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Aid proposed for costly ills

Relief is planned for patients with bleeding ailments

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A boy with a bleeding disorder self-infuses himself with Recombinant Factor VIII. Such patients quickly hit their insurance caps.

A boy with a bleeding disorder self-infuses himself with Recombinant Factor VIII. Such patients quickly hit their insurance caps.

Michael Brandy, Deseret Morning News

People with bleeding disorders facing exorbitant medical bills may have found some compassion among some Utah lawmakers, who are proposing the state help desperate families in a couple of ways.

Rep. David Litvack, D-Salt Lake, unveiled two pieces of legislation to the Health and Human Services interim committee on Wednesday to help those who have annual medical costs that often exceed the price of a median Utah home.

The problem is the "factor" or protein sufferers need to purchase to enable their blood to clot and thus prevent internal bleeds that can happen spontaneously or as a result of a mild bump. A unit costs $100 to $200, but one sufferer recently used up 40,000 units as the result of emergency surgery, said Susan Soleil, executive director of the Utah Hemophilia Foundation.

As a result, sufferers often go through lifetime caps very quickly and are forced to switch insurance, go on Medicaid or join the state's high risk insurance pool, which also has a lifetime cap.

Litvack is proposing lawmakers appropriate $250,000 to the Department of Health to administer "grants" to people with bleeding disorders to help them pay insurance premiums or to assist those who have exceeded their insurance plan's maximum benefits. The grants would pass through the health department to not-for-profit organizations that help sufferers.

A second component would create a five-year pilot program within the state's high risk health insurance pool that would allow enrollees to participate in a federal discounted drug pricing program.

Currently, Utah's only eligible recipient of what is called the federal 340B program is the University of Utah, so participants would have to be a member of that health care system.

The advantage is drug discounts as high as 50 percent for people who risk bumping into lifetime caps quickly, thus extending their insurance benefit.

Rep. Steve Mascaro, R-West Jordan, sat on the subcommittee that studied the issue and urged consideration of the issue during November's interim meeting.

"If you listen to these stories, it has been as emotionally draining as any committee I have ever sat on," he said. "In our desire to be nice, conservative legislators looking out for the tax dollar, as we are charged with doing, we also forget that the role of government is also to give a helping hand. Clearly this is one of those times."

E-mail: amyjoi@desnews.com