They say the third time is the charm, so let’s keep our fingers crossed that 2012 is the year the Utah Legislature comes through in passing a law for uniform insurance coverage of amino-acid based elemental formulas for eosinophilic gastrointestinal disorders (EGIDs).
Eosinophilic Gastrointestinal Disorders (EGID) are a group of diseases that are characterized by having a large amount of a particular type of white blood cell, called eosinophils, in various places in the digestive system. These blood cells basically make it impossible to digest the proteins in food.
Food proteins exists in all natural foods, including vegetables, fruits, dairy, fish, and meats. Symptoms vary widely, and include just about every gastrointestinal agony you can think of, including nausea, diarrhea, severe pain, malnutrition, and reflux that doesn’t respond to any therapy. Because sufferers can’t eat many – or in some case, any – foods, symptoms can lead to severe malnutrition, failure to thrive, and starvation. The only way to confirm a diagnosis is with an endoscopy and biopsies.
While some medications can relieve some of the symptoms, the only treatment is an elimination diet. It’s not uncommon for EGID patients to be forced to eliminate so many foods that they can literally count their “safe” foods on only one or two hands. In many cases, these patients must resort to what’s called an elemental diet – that means, literally, no food. The only form of nutrition these patients can tolerate is a special “elemental formula” that contains amino acids, fats, sugars, vitamins, and minerals. Sometimes it can be drunk. Other times it must be administered through a feeding tube.
Can you imagine being a child or an adult, and being hooked up to a feeding tube and its machine every day for your only source of nutrition? And yet, you still have to go about all the same daily routines as everyone else – going to school or work, getting together with friends, raising your children, or doing the grocery shopping for the rest of the family who CAN eat?
As if eliminating all food weren’t difficult enough for these people (which include both children and adults), this elemental formula can cost as much or more than a mortgage payment EVERY MONTH.
Adding insult to injury, insurance companies don’t cover elemental formulas, even when they are prescribed by a doctor and are the only defense standing between the EGID-affected patient and starvation.
That’s why this legislation, HB 211 - Insurance Coverage for Amino Acid-based Formula, is so important.
Thirteen states have already passed laws for coverage, and six other states (in addition to Utah) are trying to pass uniform coverage laws this year. The food allergy and EGID community would greatly appreciate your support of this bi-partisan initiative.
If you’d like to help make a difference in the lives of families suffering from the financial hardships of living with EGIDs, here is a quick and simple thing to do – write some emails! Here are some tips for doing that:
First, email the members of the House Rules Committee and ask them to vote in favor of moving HB 211 out of the House Rules Committee and on to the Health and Human Services Committee. If you have personal experience with this awful disease, explain how the lack of coverage for this disorder has impacted your family, emotionally and financially (or for physicians, your treatment of patients). Don't make your email too long, but emphasize how the current status harms families.
In the Subject line of your email, put: HB 211 - Please Prioritize on Agenda
The following representatives are the most important people to contact. If either of these men are your representative, change your email subject to: HB 211 - I am your Constituent - Please Prioritize
- Rep. Wayne A. Harper, Chair, wharper@utah.gov
- Rep. Ryan D. Wilcox, Vice Chair, ryanwilcox@utah.gov
Again, if any of these are your representatives, change the email subject to HB 211 - I am your Constituent - Please Support
- Rep. Jack Draxler, jdraxler@utah.gov
- Rep. Neal Hendrickson, nhendrickson@utah.gov
- Rep. John Mathis, jmathis@utah.gov
- Rep. Mike Morley, mikemorley@utah.gov
- Rep. Larry B. Wiley, lwiley@utah.gov
- Rep. Bill Wright, billwright@utah.gov
Finally, make sure you sign every email with your full name and mailing address. You can also include your phone number if desired. They do check to make sure we are real people in Utah and/or their constituents!
If you would like more information, or if you would like to add your name to the list of supporters so that you can be emailed about this legislation’s status in the future, please send an email to either Tammy Zundel (from the Utah Eosinophilic Disorders Association, eos.utah@gmail.com) or Michelle Fogg (from the Utah Food Allergy Network, mfogg@utahfoodallergy.org).
THANK YOU for your help as we fight to gain coverage for this vital and life-saving medical formula used to treat those with EGIDs and multiple food allergies in Utah.
P.S. The Utah legislature is transitioning email address suffixes by the end of the 2012 session, but some have reported returned undelivered emails to particular representatives. If this happens, please re-send using the suffix @le.utah.gov
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