The untouchables

MURRAY — Just a couple of inches high, the bottle of medication costs $1,100 and is Hunter Montgomery's gateway to a normal life as a little boy.

It is the difference between the 8-year-old playing soccer and taking a weeklong trip to California with his grandmother, or waking up crying in pain, dragging himself into his parents' room because he can hardly walk.

It is $1,100 of freedom called "factor VIII" that the third-grader injects into a vein every other day because he has severe hemophilia.

While most children his age are honing their reading skills, watching SpongeBob on the television and arguing over a bath, Hunter embraces the medical ritual with the discipline of a nurse.

He sterilizes his hands, pumps his fist and tenderly threads the needle into his arm to infuse the protein. The procedure is finished quickly, like a household chore.

In Bountiful, some 20 miles north, the little bottle and other medications for his hemophilia and other diseases have cost 39-year-old David Ohlson some $2.5 million in health-care insurance in his lifetime. Married, with two little children, the Utah marketing executive faces the prospect of running out of insurance in a few years.

Giving up his house and quitting his job are options he has to consider so he can get Medicaid and continue treatment for his hemophilia.

Montgomery and Ohlson are among a rare group of Utahns who suffer from a bleeding disorder, lacking a critical protein that prevents their blood from clotting and also lacking long-term assurances they will have health insurance benefits to help pay for a lifetime of their condition.

A top insurance executive called them the "untouchables," requiring medication so expensive that more and more insurance plans are refusing to provide coverage. But representatives from the Utah Hemophilia Foundation and Utah's hemophilia treatment center are pushing Utah lawmakers to craft a solution to the financial crisis many of these people with bleeding disorders face.

As a result of a presentation earlier this summer, a group of legislators formed a subcommittee to explore the possible options — from making changes to Utah's high-risk insurance pool to offering relief through Medicaid coverage.

"I think the sentiment is something needs to be done here," Rep. David Litvack, D-Salt Lake, said.