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

Monday, February 21, 2011

Science Fair Today, Medical Cures Tomorrow?

by Kelley Lindberg

I spent yesterday helping my son the human whirlwind create his science fair report for school. He still has to glue everything onto his display board tonight, but he made good progress.

The hardest part of the whole thing wasn’t the experiments, or the monitoring, or even writing the report. It was convincing him that it was important in the report to be exact, with numbers, careful observations, and other data. He wanted to just say “It was gross” or “It was good.” He’s a kid. It’s easy for kids to evaluate the world in simple terms.

So I patiently (okay, maybe not so patiently) explained to him again and again that scientists need to be specific in their reporting, so that other scientists can see his work and understand it, build on it, and learn new things.

Eventually, he got it, and his report looks pretty good now.

Somewhere out there are a bunch of moms and dads who I suddenly identify with and realize I owe a huge amount of thanks. They, too, worked with their kids on countless science fair projects in the last several decades, convincing their kids to be more careful with their observations, to think outside the box, to find creative problems and even more creative solutions.

Because those parents encouraged their kids through their endless parade of science projects, some of those kids grew up with a love of science. Some of them even grew up to be scientific researchers.

And now, all these years later, those researchers are on the verge of delivering to us new treatments, and perhaps even cures, for a vast array of medical problems, including food allergies.

So as I stood there slapping my forehead, trying to get my son to use a word other than “disgusting” to describe the bacteria colonies growing in his petri dish, I suddenly felt like a tiny link in a long chain of unsung heroes – those parents who suffered through all those thousands of earlier science fairs. If they could do it, so can I.

You never know what these seeds are growing. (I mean, besides the disgusting stuff in the petri dish.)

Monday, February 14, 2011

Happy Allergy-Free Valentine’s Day!

by Kelley Lindberg

Love is in the air. And, of course, so is the smell of chocolate.

But if chocolate is off your menu because of food allergies, don’t despair. There are plenty of yummy ways to celebrate Valentine’s today, whether you’re spending it with your one true love, your children, or the whole family. Here are some ideas:
  • Flowers… oh, yeah. We always love ‘em. (Kid version: Even kids like to get flowers!)
  • A romantic movie from the nearest Redbox. (Kid version: a family-friendly movie to enjoy together)
  • A bowl of strawberries dusted with sugar. (Kid version: use safe white frosting to paint faces or hearts on the strawberries)
  • A romantic novel. (Kid version: whatever book, graphic novel, or magazine they’re into)
  • A bottle of bubbly or sparkling apple cider (Kid version: a beverage they seldom get, like an unusual flavor of soda, such as pineapple, strawberry, or mango)
  • A drive up into the mountains to watch the sun set or the stars sparkle. (Kid version: this works for them, too)
  • A new pair of earrings or a bracelet for her, a pair of driving gloves for him – doesn’t have to be expensive, just fun. (Kid version: for girls, a fun piece of jewelry. For boys, a pack of Pokemon cards, HotWheels car, or action figure)
  • Rice Krispie Treats in the shape of a heart. (Kid version: replace half of the Rice Krispies with a safe flavored cereal, like Cocoa Puffs or Fruity Pebbles) (Tip: I double the amount of safe margarine called for in the "official" recipe)
  • Safe cupcakes with pink sprinkles (try Duncan Hines or Cherrybrook Kitchen cake mixes) (Kid version: Look for safe sprinkles in heart shapes)
  • Tropical fruit kabobs (chunks of fresh pineapple, mango, papaya, kiwi, banana, and strawberries threaded on a skewer). (Kid version: if they don’t like fruit, try safe popsicles)
  • Quiet time with your sweetie (with the door locked, perhaps?). (Kid version: Board games all night!)
Valentine's Day is all about the caring, not about the calories. And it doesn't have to be expensive or elaborate, either. Plan a regular meal or evening with one fun thing thrown in, and everyone will love it! I hope you have a wonderfully loving and safe time with your loved ones.

Monday, February 7, 2011

Your Family Doctor vs. an Allergist

by Kelley Lindberg

One of the first questions I ask someone who has been newly diagnosed with a food allergy (or who suspects they may have a food allergy) is “Have you seen a board-certified allergist?” There’s a good reason for this question.

A January 2010 article published in Pediatrics magazine, the official journal of the American Academy of Pediatrics, included an article called “Food Allergy Knowledge, Attitudes, and Beliefs of Primary Care Physicians,” by Ruchi S. Gupta, MD, MPH; Elizabeth E. Springston, BA; Jennifer S. Kim, MD; Bridget Smith, PhD; Jacqueline A. Pongracic, MD; Xiaobin Wang, MD, MPH, ScD; and Jane Holl, MD, MPH.

In this article, the authors describe their research into food allergy knowledge and perceptions among pediatricians and family physicians in the United States. They surveyed 407 primary care physicians around the U.S., 99% of which reported that they provide care for food-allergic patients.

The results of the study show that while general-practice physicians and pediatricians are of course invaluable in many ways for many common illnesses or preventative care, their knowledge of a complex, specialized, and rapidly changing field like food allergies is not necessarily what most patients or parents of food-allergic might expect.

According to the article, participants in the study answered only 61% of knowledge-based items correctly. Only 80% of the physicians knew that the flu vaccine is unsafe for egg-allergic patients. While 90% knew the number of food-allergic children is increasing in the United States, only 23% knew that milk-based yogurt and cheese are unsafe for children with IgE-mediated milk allergies.
Even more concerning: “Fewer than 30% of the participants felt comfortable interpreting laboratory tests to diagnose food allergy or felt adequately prepared by the medical training to care for food-allergic children.”
Some other particularly concerning statements from the article:
  • “There was some confusion among participants regarding signs and symptoms suggestive of an underlying food allergy.”
  • “The majority of participants believed that anaphylaxis posed the greatest threat to young children rather than teenagers.”
  • “…only half chose the correct concentration and route of administration for epinephrine in the event of food-induced anaphylaxis.”
The article’s authors suggested that part of the problem may be that “Most pediatric and family medicine training programs do not offer formal training in food allergy, although experience likely varies by program.” As broad and far-ranging as the entire field of medicine is today, that’s not surprising. A general-practice physician tries to be a generalist to do the most good for the most patients – they usually strive to be well-grounded in the basics of healthcare, with a more surface-level knowledge of various specialties. But there are simply not enough hours in the day for anyone to be a specialist in everything.

From this study, it’s important to realize two things:
  1. Patients with food allergy probably should not rely on their family doctor or pediatrician for expert diagnosis, treatment, and ongoing care of their food allergies. Instead, they should seek out the knowledge and experience of an AAAAI board-certified food allergist. (To find one in your area, click here for the American Academy of Allergy Asthma & Immunology Physician Referral Directory.)
  2. Physicians are often aware of their limitations, but even so, they may not be willing to refer their patients to allergy specialists. In some cases, because of their limited knowledge or experience, they may even downplay the seriousness of food allergy symptoms, such as treating severe eczema with creams instead of identifying a possible root cause of food allergy.
The authors conclude by rating the overall knowledge of their sampled physicians as “fair.” The authors go on to recommend: “With the recent increase in childhood food allergy and the threat posed by food-induced anaphylaxis, it is important for generalists to be educated about the diagnosis and treatment of this condition.” They also suggest that general physicians can take advantage of the many resources already available to increase their knowledge, such as “a food allergy practice parameter, outlining risk factors, diagnostic techniques, and treatment plans,” which was developed and published in 2006 by the American Academy of Allergy Asthma & Immunology and the American College of Allergy, Asthma, and Immunology.

Please understand – pediatricians and family doctors are essential and invaluable, and I am NOT trying to undermine them. Instead, I am just pointing out that once they identify a possible food allergy, you will probably be better served by a dedicated allergist, in the same way that if your family doctor suspects (or confirms) cancer, you would probably then go see a cancer specialist.

I absolutely love and depend upon my son’s pediatrician for most of his ailments and normal childhood problems. But I also love and depend upon my son’s allergist for all of his food-allergy issues. We can’t live without either of them.