Democratic Process in Action

The Utah Legislative session for 2009 is over, and HB 124, which affected the lives of many Utah families who struggle to pay for the formula that keeps their severely allergic kids thriving, didn’t make it to the Senate floor.

That means it failed.

So those families are still faced with paying hundreds of dollars a month for the only formula that their babies can ingest, because insurance companies view it as “unnecessary.”

Frustrating as it was, following the progress of this bill was interesting. I participated in the democratic process for this bill by emailing my local representatives early on, then emailing all of them last week, asking for their support. When it passed the House and was sent to the Senate this week, I emailed Minority Leader Rep. David Litvack asking him to prioritize the bill so that it would get read in the Senate. It was assigned #20 on the list, so it never got read before time ran out.

Despite the fact that the bill failed, this is what I learned: it’s surprisingly easy to participate in this process of government. I sent three little emails. It took maybe a minute of my life each time. Three minutes total. And it came close to making a difference.

What was even more surprising was that I actually got responses from several of the representatives – all but one of the ones who responded said they supported the bill. The one who didn’t outright support it was honest enough to tell me he wanted to learn more about the bill and about why the finance note was removed before he would vote for it. I appreciated that.

These representatives must get tons of emails. They’re faced with a zillion bills to review, make a decision on, and vote on. Most of those bills are either incomprehensible or imbecilic, and this year everything was complicated by the distracting background noise of Utah’s economy being sucked down the drain. And this bill, I admit, probably wouldn’t be high on anyone’s list if they weren’t affected by the diseases that it covers. Yet several of the representatives actually took a minute of their time to write back to me to tell me their stand on it.

It was an interesting experience, even if it didn’t turn out the way we’d hoped. Last year (and the year before that), our allergic families were successful in getting legislation passed that makes it legal for our kids to carry their epinephrine shots in school, and lets responsible adults like teachers, counselors, and coaches get prescriptions to carry and administer epinephrine to kids in their charge. That legislation made it through the legal process successfully. So we know it can happen, and we know there are people in the legislature who care about our medical issues.

So next year, I hope the people who supported us this time will support us again, and we’ll see if this bill gets passed. And I’ll be ready with my mouse poised over the Send button on my email. A little communication with the real people casting the votes really can make a difference. Who knew?

Help Pass H.B. 124

The Utah Legislature is in session. Now before you go and hide, there’s a good thing happening right now in the legislature. Representative Christine A. Johnson has sponsored a bill (H.B. 124) asking for “Insurance Coverage for Eosinophilic Gastrointestinal Disorders and Short Bowel Syndrome.” (Click here to read the text of the bill.)

What are Eosinophilic Gastrointestinal Disorders? Basically, it’s a disorder that “is characterized by having above normal amounts of eosinophils in one or more specific places anywhere in the digestive system.” In terms the rest of us can understand, these people (and we’re often talking about babies and kids here) have intestines that can’t tolerate or absorb regular foods or even baby formulas composed of whole proteins, fats, or carbohydrates.

People with these disorders are allergic to just about everything. Babies with it can’t eat anything but a specific type of formula made from non-allergenic amino acids that are already broken down so that the baby can more easily digest it. Unfortunately, this formula costs hundreds of dollars a month for a single child, and most insurance companies don’t cover it. Hundreds of dollars a month. Hundreds. Did I mention hundreds?

Rep. Johnson’s bill will direct insurance companies to recognize these diseases as the deadly diseases they are, and will get the insurance company to cover this formula as the medically necessary product it is if the child’s doctor prescribes it.

Without this formula, these babies simply do not thrive. They drop well below range on weight and height charts. They grow very ill. They can’t eat anything, not even mother’s breast milk. Yet most insurance companies ignore it.

So we’re very thankful to Rep. Johnson for sponsoring and filing this bill with the Legislature. If you’ve got a minute or two, call or write to your own state representative and let him or her know how serious this disease is, and how essential covering this formula is for the families affected by it.

If insurance companies will cover Viagra to make babies, the least they can do is cover the medically essential formula that is all that will keep some of those babies alive and thriving.

You go, Rep. Johnson!