Neocate One+ and health insurance

[lrivetz]

I used to be able to eat any kind of food and not gain any excess weight, but now I can’t eat any kind of food without having to worry about the suffering the consequence.

I found an article about a boy who cannot eat food that contains protein.
The child’s name is Judson ”Buddy” Garvin, and he is 3 ½ years old. He looks very normal like any other kid, except his diet is not normal. I am sharing this because like any other parents problem including my children’s health; I cringe about the thought of myself having to worry about dealing with health insurance. That one day, I will be asking for the help of my own insurance company.


Boy cannot eat food
By Mike Wright

Despite an allergy to food, Judson “Buddy” Garvin thrives by taking a special formula that keeps him healthy. His family is having difficulty getting insurance companies to pay for the special diet. /MATTHEW BECK/Chronicle





Judson “Buddy” Garvin is a spunky 3 1/2-year-old boy who lives with his sister and parents in Pine Ridge.

He runs about like a little boy, plays with his sister like a little boy and hugs his mom like a little boy.

Normal in every way, but this:

Buddy cannot eat food.

He is allergic to all food. All drinks too, except water.

His nutrition comes from a formula called Neocate One+, produced by a British Columbia company. It provides the nutrients he needs to grow without the protein contained in food.

Buddy doesn’t ingest Neocate One+ by mouth. It goes into a tube just above his belly button.

Without Neocate One+, his parents say the experts have told them Buddy cannot survive. Or, he will survive, but in constant pain with vomiting, intense diarrhea and crying through the night.

Welcome to Buddy’s world: The world of a young boy with a rare disease called Eosinophilic Enteropathy that strikes just one in 10,000 people, according to American Partnership for Eosinophilic Disorders.

As Buddy playfully begs his dad to come outside to play, John Garvin says: “I’m blessed. I’m very blessed. He’s a very happy little boy.”

Then Garvin picks up a box of packets off a kitchen counter. The packets are mixtures of Neocate One+.

“This,” he says, “is what keeps my kid going.”

Pain from start

Judson “Buddy” Garvin was born Feb. 26, 2002, at Citrus Memorial Hospital. He was six weeks premature.

His mom, Nancy Garvin, knew something was wrong as soon as she brought him home a week later.

He had trouble nursing. He vomited constantly and had diarrhea. He had painful earaches.

“He would scream endlessly in pain,” Nancy Garvin said. “There were days he would scream 14 hours straight.”

Buddy’s parents didn’t know what to do. They took him to doctors, then to specialists. Doctors ruled out intestinal diseases.

As Buddy got a little older, his mother tried feeding him bland foods, such as Cheerios or corn.

It didn’t help. Buddy’s condition worsened.

“I unknowingly was just making him sicker,” she said.

They took him to Shands Hospital in Gainesville.

Doctors discovered his immune system was seriously deficient. He was placed on a treatment program and still receives that treatment every four weeks.

Buddy already was on a diet that excluded dairy and other products intolerable to him. Further tests showed he had esophogitis and eosinophilic colitis.

He was promptly placed on Neocate One+, an amino-acid based formula that removes proteins found in food, but carries nutrients the body needs.

His diet was further changed to foods that did not include anything from the major allergen groups — eggs, wheat, nuts, shellfish, corn and dairy. He made slight improvements, his mother said, but contained to have severe ear infections.

They took him to a specialist in Cincinnati, and still return there three or four times a year.

Soon, doctors and Buddy’s parents decided to remove him from food altogether and provide nutrition solely through the Neocate One+.

His condition began to improve immediately.

His parents saw hope — until the insurance problems cropped up.

Insurance won’t pay

Neocate One+ is expensive. It costs about $1,000 a month and Garvin’s Blue Cross Blue Shield of Florida will pay only $2,500 a year for the formula.

When Buddy was diagnosed at 15 months of age with eosinophilic enteropathy, the Garvins enrolled him in Children’s Medical Services, or CMS, a program with the Department of Health meant as an insurance safety net for children with chronic health needs.

CMS helped to pay for the formula that Blue Cross Blue Shield wouldn’t pay.

Then, inexplicably, CMS told the Garvins they no longer qualified. CMS said Buddy’s condition was no longer chronic because his health had improved.

Also, the Garvins said, both Blue Cross Blue Shield and CMS wanted Buddy placed on a less-expensive formula, even though the Garvins had letters from medical experts saying that Neocate One+ was what Buddy needed.

The CMS case worker whose name the Garvins provided to a reporter was on vacation last week and unavailable for comment.

“It’s the bureaucratic thing of all this that makes it all crazy,” Mrs. Garvin said. “It’s like, we don’t qualify, we don’t exist. Nobody wants to deal with it.”

And people don’t understand the fuss because they see this seemingly healthy child running about like any other boy.

Even at his young age, Buddy knows.

“He knows if he east something, he’s going to be ill,” Mrs. Garvin said.

Buddy’s 5-year-old sister, Jacquelin, knows it, too.

“She tries to protect him,” Mrs. Garvin said. “We were at the Cincinnati Zoo and somebody handed him a piece of chocolate. She immediately grabbed it and said he can’t have it because he’s allergic to it.”

The Garvins are disgusted at suggestions by insurance representatives that Buddy can thrive without the expensive Neocate One+.

“If we cut him off of this and you come back in two or three months,” Buddy’s father said, “you wouldn’t recognize him.”

http://www.chronicleonline.com/articles/2005/11/28/news/news10.txt