A bill that could save Washington families tens of thousands of dollars will be at the center of a public hearing Monday in Olympia. The bill would require health carriers to put a limit on out-of-pocket expenses in all of their health plans.

Tony and Kristen McNulty have two-and-a-half-year-old son with severe Hemophilia A. Last year his total health care costs exceeded half a million dollars and the family's out of pocket portion of that placed a big time strain on their budget.

They are hopeful Senate Bill 6241 will ease their burden.

Declan McNulty’s conditions means there is virtually no clotting factor in his blood.

"Anything from a common squeeze of the arm he can bruise,” his father Tony McNulty said. “ Walking off a curb, jumping, running he can get spontaneous joint bleeds, spontaneous muscle bleeds which there is no rhyme or reason, they just happen.”

Declan has had the disorder, caused by a genetic mutation, since he was born. There is no cure for what will likely be a lifelong condition, management of which  takes lots of medicine and lots of money.

“We have our needles, our dressing changing kits, our syringes, saline and heparin,” said Kristen McNulty. “We're paying annual premiums of over $16,000.  On top of that we have our deductible as well as our maximum out-of-pocket and then expenses that insurance does not cover.  Our family last year spent almost $30,00 on medical expenses”

The  Senate Committee on Health and Long Term Care will hold a public hearing Monday on the bill. If passed, it would require that single out-of-pocket limits not exceed $5,950 per year for plans that cover an individual or $11,900 dollars for plans that cover two or more.

If passed, the bill  would be a financial life line for families like the McNultys who, even if they are able to pay, face difficult financial decisions every month.

"Families are being faced with really tough questions right now,” Kristin said. “ Do you keep your kids in pre-school or do you make sure you've got enough money for your insurance?  That is what we're facing.”

Kristen saidshe will represent her family at the public hearing and hopes to find compassion from lawmakers that she doubts she'll see from health insurance companies.

To make matters worse for the McNulty's, treating Declan's condition will only get more expensive because the cost of the medicine goes up with his body weight.

Senate Bill 6241 appears to have bipartisan support and there is a companion bill in the house.