HB 211 – Fighting for Coverage of Elemental Formula for EGID Patients

by Kelley Lindberg


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

Next, send the same email to the following committee members, but change the email subject to: HB 211 - Please Support & Move to Committee

Again, if any of these are your representatives, change the email subject to HB 211 - I am your Constituent - Please Support

• Rep. Jim Bird, jbird@utah.gov
• 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

If you are unsure who your representatives are, click here to easily find out http://www.le.utah.gov/GIS/findDistrict.jsp. Emails from constituents are much more powerful.

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

Fighting for Coverage of Elemental Formula for EGID Patients

by Kelley Lindberg


This morning, the Utah Legislature is voting on Utah House Bill 233 – “Insurance Coverage for Amino Acid-based Formula.”

While we’re not sure if this bill will pass or not, we’re encouraged by the response our pleas have received – it looks like, through the tireless efforts of Tammy Zundel, President and Founder of the Utah Eosinophilic Disorders Support Group, and Michelle Fogg, president and founder of the Utah Food Allergy Network, insurance companies may be willing to sit down and discuss the possibility of covering the amino acid-based formulas for EGID patients.

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 aren’t just in meat. Some type of food proteins exists in all natural foods, from milk to vegetables to fruits to, yes, 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 there are some medications that 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 with they are prescribed by a doctor and are the only defense standing between the EGID-affected patient and starvation.

That’s why this legislation is so important. If it doesn’t pass this year, several representatives have already agreed to help us try again next year (Rep. Menlove would be the sponsor and Rep. Moss and Rep. King would be co-sponsors). In the meantime, however, Tammy and Michelle report that because so many Utahns affected by EGID have written letters to their representatives this year, the insurance lobby has agreed to set up one-on-one meetings with insurance companies here in Utah to seek coverage for amino-acid based elemental formulas without a legislative mandate. And that’s a great thing. Everyone involved just wants to see this formula covered so that the people affected by this devastating disease can receive the help they desperately need, whether it’s accomplished via legislation or through negotiations directly with the insurance companies.

Thanks to people like Tammy and Michelle, EGID sufferers have a little more hope this morning.

For more information about EGID, visit the website for the American Partnership for Eosinophilic Disordres (APFED) at http://www.apfed.org/.

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!