A bill to protect children with a rare gastrointestinal disorder was signed into law today by Gov. Jay Inslee.

SHB 1216, sponsored by Rep. Cyrus Habib, D-Kirkland, and Sen. David Frockt, D-Seattle, would move the Department of Health towards mandating that insurance companies cover the elemental formula necessary to feed children who suffer from a rare gastrointestinal disorder called eosinophilia.

“It’s heartbreaking to think that a child could suffer from a major medical issue like eosinophilia and that their family could struggle to have to pay for their care,” said Habib. “Insurance companies can and should find it in their capacity to pay for medicine that sick children need to live.”

“This is a life-sustaining, life-saving medical food that some insurers have decided not to cover.” said Frockt. “This is the very definition of a necessary treatment because otherwise these children may not be able to get any other nutrients into their bodies. All Washington families need to know that the insurance that they’ve paid for their children will be there for them when they need it.”

Eosinophilic gastrointestinal disorders are very rare. Those who suffer from the disorder are unable to breakdown proteins, meaning they must take proteins through a special elemental formula. If the treatment must be delivered through an invasive feeding tube, the expensive formula is generally covered by insurance. However, if the patient is able to swallow the formula, many private insurers will not cover the cost.

The treatment costs approximately $1,200 per month and many families have great difficulty covering the out-of-pocket cost for the treatment. Mandating insurance coverage would help those families afford life-saving treatment for their children.

The bill would require the state Department of Health to conduct a sunrise review on instituting a mandate that all insurance plans cover treatment for eosinophilia regardless of delivery method. The department would examine the impact on insurance plans and report back to the Legislature no later than 30 days prior to the 2014 legislative session and the Legislature would take appropriate action.

Jeff Schwartz, the parent of a child with eosinophilia, brought the issue to the attention of Habib and Frockt and testified on several occasions before legislative committees. Schwartz’s citizen advocacy was a major part of the effort to rally support for the bill and demonstrated to legislators on both sides of the aisle the importance of putting this protection for families into law.

“Eosinophilia is rare, but a child with eosinophilia changes a family forever,” said Schwartz. “The struggle that families have to go through is hugely challenging. Every family should be able to be confident that if their child is stricken with this rare and terrible disorder, their insurance company will be there for them. This is a basic protection. Medicaid covers it; private insurance should cover it as well. It’s only fair.”

“When people pay for health insurance, it’s reasonable for them to expect that their insurance will pay for treatment that their child needs to survive,” said Habib. “I’m glad that Jeff brought this issue to our attention and that we were able to pass a bill to help solve the problem.”

“Jeff’s advocacy was a big part of getting this bill passed,” said Frockt. “He came to me last summer. When he explained the situation, I decided that this was an easy call to sponsor.  I don’t know where we’d be without people like Jeff who demonstrate what determined advocacy is all about.”