Medical nutrition saved my son’s life

The Medical Nutrition Equity Act has been introduced in both the House and the Senate. This bill would expand coverage under Medicare, Medicaid, other specified federal health-care programs, and private health insurance to include foods, vitamins, and individual amino acids that are medically necessary for the management of certain digestive and metabolic disorders and conditions. Wondering what all that means, and why in the world health insurance should pay for food? Here’s our story.

37B8EB67-61CA-4376-BE8F-688608014194When L was born, he couldn’t eat. He had almost no functional intestine; he relied on parenteral (intravenous) nutrition for all of his nutritional needs, and continued to need the support of parenteral nutrition for his first three and a half years. Without this very expensive alternative to oral nutrition, he would have starved to death in the first few days of his life. (You can read an introduction to our story here and here.)

With the help of a series of surgeries, his small intestine was reconstructed and reconnected, and his body gradually became able to handle oral liquids and then solid foods. We were finally able to begin working toward transitioning off of parenteral nutrition, which can cause severe liver damage if used for an extended period of time. But with only 20% of the small bowel he should have, and that composed mostly of scar tissue, he initially absorbed very little of what he took in orally. 

I pumped enough breastmilk to get L through until he was 15 months old. At that point, we had to find an alternative that he could tolerate in order to continue the long, hard struggle against both oral aversion and malabsorption. Even though he was old enough to transition to cow’s milk and solid foods, and was taking some of both, he needed something that offered far more comprehensive nutrition that could be far more easily absorbed. 

With short bowel syndrome, there are no one-size-fits all solutions. Every body is different, and every bowel reacts differently. Two patients with identical diagnoses and medical history may have completely opposite reactions to the same food or formula. So, working closely with a pediatric GI specialist and a nutritionist that knew him well, we began trying out different combinations. After several very difficult weeks in which L’s weight and labs dipped dangerously – to the point of requiring an emergency blood transfusion and multiple inpatient stays – we landed on Pediasure Peptide.

Pediasure Peptide is different from the Pediasure you might pick up at the grocery store to supplement your child’s diet. It’s a medical-grade prescription formula for total nutrition, used to treat malabsorption and failure to thrive, and it costs $166/case. As a toddler, L was going through a case every 8 days. 

At first, our insurance covered his Pediasure Peptide – and in that year, he began to thrive. He was finally growing! His labs were trending upward for the first time in his life!

Then one day, we got a call. It was the account manager at our home medical supplier, reaching out to let us know that UHC was denying all enteral formula coverage moving forward. They claimed they had been covering it in error for the past year, and would no longer cover even a portion of it, effective immediately — because, according to UHC, formula was not medically necessary unless it was the sole source of nutrition. 

Maintaining some oral intake was absolutely vital to L’s continued progress, both with regard to absorption and oral aversion, for which he was receiving regular intensive speech therapy and occupational therapy at the time. UHC would have covered his Pediasure Peptide if we could have provided proof that he took nothing by mouth – but to take away his oral nutrition would have meant giving up on progress.  

Our home medical supplier pushed back. UHC ignored them. His GI specialist wrote letters of medical necessity. UHC ignored them. 

We had exhausted our appeals. UHC was able to pronounce that his formula wasn’t needed, despite his entire medical team providing written attestation that it was his primary source of nutrition and was an essential part of his treatment plan. 

So we were faced with a choice: Pay out of pocket, or look for an alternative. 

At the time, we were hitting our deductible by the end of January every year and reaching our maximum out of pocket expenses by April – $6,000 per year, every year, going toward L’s basic medical bills. On top of that, we were spending over $1,000 per year on specialized vitamins and oral hydration supplements, none of which were covered or counted toward our max OOP. 

To pay for Pediasure Peptide out of pocket, in the quantities he needed, would have cost us an additional $8,000 per year. 

At the time, I was in the weeds of chasing after yet another round of reminding UHC that our limit on home nursing visits had been waived by Z’s employer, because they insisted on billing us for a home nursing visit for every single day we had an IV or enteral feeding pump in our home despite the fact that no nurses ever came to our house and Z and I administered all feeds ourselves. I had just received a bill for $55,000 dollars. We were a dual-income family, but I was a graduate student and my income was a teaching assistant stipend. We had already cut our budget where we could. With the added ongoing expense of OOP enteral formula, my entire annual salary would have gone to pay for just his medical needs (let alone any other of the plethora of expenses that come along with caring for a child). 

And so we started over. His medical team was able to provide us with one more “sample” case of Pediasure Peptide to help us make the transition, and we began looking for less expensive alternatives to the only formula that had helped him make progress. 

He didn’t tolerate any of them. A little over a year later, his growth and labs had deteriorated to the point that he underwent another major bowel surgery, requiring a 10-day inpatient stay. He could very well have needed this surgery anyway, even with the support of Pediasure Peptide — but we didn’t get the chance to find out.

L is doing well now. We have managed to forge ahead. But the limitations placed on our medical nutrition options posed significant obstacles along the way – obstacles that we shouldn’t have had to face. 

For others, those obstacles are insurmountable. Conditions deteriorate when the most effective treatment is placed out of reach due to cost. Families have gone bankrupt trying to give their children a chance at survival. People have died jumping through the hoops of insurance companies’ fail-first requirements. 

An estimated 340,000 people in the United States rely on enteral feeding for nutrition, and their options should be carefully weighed and decisions made in close partnership between themselves and their health care providers — not someone sitting in an insurance office who has never even heard of their diagnosis and yet still has the power to dictate their treatment. 

Contact your members of Congress. Ask them to support the Medical Nutrition Equity Act. Lives depend on it.

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