Family Battles Insurer Over $1,800-a-Month Miracle
Several times a day, Catherine Evans’ three children drink a little juice box containing a gooey, foul-tasting nutrient solution.
The nutrient drink is necessary because Randi, Brooke and Drew can’t digest the complex proteins in most foods, their mother says.
For Evans, Neocate is an $1,800-a-month miracle that has transformed her achy, nauseated children into relatively healthy kids.
But for Blue Cross and Blue Shield of the Rochester Area, Neocate is not a covered expense. The insurance company contends that if it is forced to pay for the Neocate, it could set a precedent that could raise premiums for others.
A court must decide whether Neocate is a non-covered food supplement as defined under the insurance policy.
Evans said she first noticed problems with Randi shortly after her birth 13 years ago. She had bad vision, chronic infections and developmental delays. Often, she would spit up food.
Brooke, born a year later, had many of the same symptoms, and doctors later detected damaged chromosomes in the girls. Drew, born the next year, had no such damage.
But all three became extremely ill around age 6, Evans said. Randi was first. Her limbs tingled and she complained of nausea, near-constant headaches and sore throats. All three eventually began having extreme difficulty eating.
“Every time they’d take a couple of bites of something, they’d stop eating because of nausea, stomach pain or the inability to swallow their food,” Evans recalled.
A years-long search for answers took her to several doctors in this tiny Adirondack Mountain town and in Albany and Boston. At Johns Hopkins University Medical Center in Baltimore, Dr. Kevin Kelly suspected that the children had protein allergies.
Kelly put them on a diet of Neocate augmented with the few foods that the children could easily digest, including potatoes, plain oats and rice. Neocate contains proteins broken down into their amino acid building blocks, making digestion easier, Kelly said.
The children dislike the formula--Randi looked up from her checkers and said, “Yuck!” when asked about it--but enjoy relatively good health.
Although Evans credits the diet with saving her children’s lives, doctors have been unable to definitively diagnose their problems.
Kelly, now director of pediatric gastroenterology at St. Christopher’s Hospital for Children in Philadelphia, said it is unclear what caused the children’s problems or if their condition would have worsened without Neocate. But he did note that their post-Neocate recovery was dramatic.
Such an allergy to protein would be extremely rare, said Dr. Ronald Kleinman, chief of pediatric gastroenterology at Massachusetts General Hospital. He also noted that a high proportion of suspected allergies cannot be confirmed.
Neocate costs $600 a month for each child. Evans, who is separated from her husband and is studying to be a medical assistant, said she cannot afford it. Blue Cross picked up the tab for only one month, December 1994.
Since then, Medicaid has temporarily supplied Neocate to the two girls, who are classified as disabled because of the chromosomal damage. The three youngsters share the Neocate.
A trial could be years away. But a state judge in Albany will determine this month whether Blue Cross should be forced to pay for the Neocate until the trial is over.
Blue Cross contends that since Neocate is a food supplement, it is not covered under Evans’ plan.
Kevin Luibrand, Evans’ lawyer, argues that Blue Cross neglected in its contract to define “food supplement” and therefore has no basis to exclude Neocate.
The state Insurance Department has already dismissed a complaint by Evans, saying that Neocate is not one of four food supplements that insurers are required to cover in New York.
“We’re not a heartless company,” Blue Cross spokesman Philip Puchalski said. “We simply cannot go beyond the limits of our contract simply out of compassion.”
