Monday, February 28, 2011

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/.

2 comments:

Amber and Eric Merrell said...

Thank you so much for posting this. My two sons are on elemental formulas and I had no idea that anything was being done. Thank you, this will help me get more involved.

S said...

Thanks for such a great post Kelley!