Lincoln, Age 2

Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician changed his formula from Similac to Alimentum RTF (I had a double mastectomy) and this continued along with screaming pain throughout the day and night, vomiting and barely maintaining the 20th percentile in weight. At 7 weeks of age, we saw Pediatric GI specialist. Lincoln was prescribed, EleCare. The prescription was sent to CVS and immediately denied.

Lincoln’s GI team (including a pediatric nutritionist) contacted Anthem and was denied continuously. At first, it was because it was formula, then denied because he was gaining weight and then denied because of the route of the formula (he does not have a feeding tube), and the denials continued. A Letter of Medical Necessity was sent along with eight diagnosis,’ and we were finally approved it after 5 weeks of denials. In the mist of 5 weeks, we paid for EleCare out-of-pocket from reputable businesses, EleCare is $40-$45 per can. Lincoln was prescribed 15 cans per month, costing between $600-$650 per month (this cost is at 7 weeks of age). Financially, this was huge to us. My husband returned to work and worked overtime in order just to pay for the formula. This prevented the needed bonding time between them and additional time way from the oldest son, who was 12 years old at the time. At 6 months of age, Lincoln was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES) after acute reactions to rice cereal and oatmeal. FPIES has been a difficult journey, I was graciously granted a Leave of Absence (LOA) to allow me to be with Lincoln; it was a terribly difficult decision to leave the career I loved so much but I know it was for the best. Lincoln has truly thrived since I became his fulltime nurse . Each new trial is decided on by countless hours looking at nutrients to see where he is deficient in and trying to fill the gaps. Lincoln still requires formula to meet his nutritional needs, but we know we will get to the place where he can do without it.

There was no other choice in formula for Lincoln. After the second feeding, he was a completely different baby. He was not screaming in pain, his stools returned to normal and he is actually happy. It was agonizing to watch my son scream in pain. I could not do anything to help him, I felt helpless.

Our background: My husband; Tyler, is a Fire Captain, Paramedic and an Air Force Reservist. I’ve been a Critical Care RN for 11 years, I received my Master of Science, Nursing and at this time, I am not working.I want to prevent other families from experiencing this. I want to help support these parents to bond with their newborns not to work extra hours to pay for prescribed formula that necessary to their child’s life.

The pictures attached are: Double picture is from diagnosis to 6 weeks later. Huge difference. The only thing you cannot see in the picture is his distended abdomen. The other pictures are showing the happiness he has; he is happy and thriving on EleCare! After many denials, we were finally approved for EleCare and now EleCare Jr. We pay just shy of $300 per month for formula. Lincoln is prescribed 15 cans per month.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.