PSA: What One Mom Wants You to Know About Specialized Formula and Insurance

As I’ve said before, I have gotten to know many mothers of babies born in March 2011 – through BabyCenter, Facebook and other social media platforms. One such mom is Jessica, whose son Tristan has – after a lot of testing – been diagnosed with Eosinophilic Esophagitis.

For Tristan, it “basically means that when he eats certain foods like wheat, eggs, milk, soy, nuts and fish his body does not know how to digest the food, ” Jessica explained to me, “so it builds up Eosinophils to attack the food.”

Eosinowhats?  “Eosinophils are a type of white blood cell,” she added. “Eosinophils attack when there is a an allergy, but in Tristan’s case his body gets confused and sends Eosinophils to attack when there is really no threat.”

So basically, there’s not a ton out there for Tristan to eat that won’t completely screw with his tiny digestive system. In between seeking out support groups and more information about Tristan’s new diagnosis and searching for foods he CAN eat, Jessica also has the task of wrangling with the insurance company to cover the one thing that everyone is universally drop-dead certain Tristan can eat – an expensive-as-all-hell elemental formula called Elecare.

“Elecare is already broken down into the smallest possible form called amino acids,” Jessica explained. “This helps the body to digest more out of the food without having to work as hard. This allows him to gain vital nutrients from the food that he eats. If he does not drink enough of the Elecare, then he will not be receiving enough nutrients to sustain his weight.”

So it sounds pretty simple and basic, right? The kid needs Elecare to survive. Beyond any other food he eats, the Elecare is what is going to reliably and safely provide the nutrients he needs.

And yet, Jessica’s insurance denied the claim. Why? “Because he eats by mouth,” Jessica said. Yes. He can eat by mouth. But right now, what he can eat by mouth is severely limited. And since he needs Elecare, Jessica is faced with paying – wait for it – more than $200 for just six cans. And, even worse, she makes too much to qualify for WIC in Texas, which would’ve helped cover some of the cost of the formula, too. Theoretically, if Tristan had a feeding tube, the insurance company would cover the formula. But since he can drink it out of a bottle or a sippy, it’s no dice. So, yes, you’re reading this correctly, the insurance company would rather pay for a more expensive and invasive delivery method.

Are you hyperventilating and headdesking along with Jessica right about now? Because that’s at least $800 a month at least to keep her son fed. Elecare’s maker does have a program to help some patients who can’t afford the cost, but how long would it take to get Tristan enrolled and formula on the way?

So Jessica decided to do some digging. Come to find out, in 2009, Texas HB 2000 (which directly addresses formulas like Elecare and what insurance must cover) was signed into law. Jessica found one draft here, and then I found that the bill was voted in on May 31, 2009, by both the state senate and house. It was signed by Gov. Rick Perry on June 19, 2009, and was effective on September 1 that same year.

The law added a new chapter to the state’s insurance laws, which, directly mandates that insurance companies cover the cost of the formulas no matter how the patient partakes of food, as long as he or she has one of the listed diagnosis. The text is here, and the nitty gritty is on pages 3 and 4.

The law states, in part, that “a health benefit plan must provide coverage as provided by this chapter for amino acid-based elemental formulas, regardless of delivery method (italics mine).” Among those conditions listed as qualifying? “Eosinophilic disorders, as evidenced by the results of a biopsy.”

Well, Tristan should qualify, yes?

All of this has further lit a fire under Jessica, who is now taking her campaign to get this information out to other parents to Rick Perry’s office.  Her letter, in part, explains how necessary it is for insurance companies – and parents – need to be made aware of this law. “I feel that more insurance companies need to be made aware of this law and of disorders such as Tristan’s in order to avoid long delays in providing the medically necessary treatments that are required for this disorder,” she wrote Perry. “I hope that together we can bring awareness to conditions such as Tristan’s and better ensure that families like ours are provided the means in which to provide for their children.”

I promised Jessica that I’d help with her awareness campaign, because I think it’s important to get this information out. She feels strongly that more parents out there facing the same issue she has faced (and I personally know of at least one more person whose state mandates the coverage but the insurance company still denied the claim repeatedly) need to know that they should appeal, and become familiar with the laws in their state regarding insurance coverage. She feels even more strongly that insurance companies should know the law and follow it without the repeated delays and hassles.

Final note: If you are needing to appeal an insurance claim denial, this article has a good run down.

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2 Comments

  1. Beautiful Bethany. I couldn’t have said it better myself. It means a lot to know there are people out there who support Tristan and are helping to spead the word about this issue. Thank you again!

    Reply

  2. Jessica is so right! Unfortunately Florida doesn’t require it to be paid for. I’ll have to get in touch with some local legislature and see if anything can be done. Thank you ladies!!

    Reply

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