Bill Watt’s Blog

Here is a link to the site for Bryanna’s Bill which was started in an effort to pass LD 658 which would require insurance companies, doing business in Maine, to cover the cost of elemental formulas for children who are unable to consume a natural, life-sustaining diet due to various allergies or diseases. 

I started BB*PHI in an effort to help other families in Maine. Our daughter Bryanna was born in January 2006. Although she was a very happy child, there was something wrong. At three weeks, she broke out in severe weeping eczema and hives.  She would vomit after every feeding as well as throughout the day and night (sometimes hours after nursing).  She had persistent diarrhea. She gained weight very slowly.  Bryanna is our first child, so when her doctors told me she was fine and a “spitter”, I took them at their word.  I was nursing and was told over and over that it was the best possible thing for her.  At three months she had her first instance of facial swelling.  I started researching and found that something I was eating could be causing these reactions.  For six weeks I stopped eating the seven major allergens (dairy, eggs, soy, wheat, seafood, peanuts and tree nuts). She was not getting better. Finally, at the age of five months, she was diagnosed with life threatening dairy and egg allergies. Her allergies were so severe, that if dairy comes into contact with her skin it will immediately cause hives and swelling.  

Once doctors determined the extent of her allergies they put her on an elemental formula called Neocate. After three days on Neocate, Bryanna was like a new child. No more vomiting, diarrhea, and all-over hives.  Her eczema flares had quieted down and there were no more incidences of facial swelling. In one month she gained one pound (16oz). Prior to having Neocate,  she was averaging about three ounces a month.  When she started on solid foods at seven months, Bryanna ended up back in the same boat. Almost every food we tried caused a violent physical reaction. She would begin vomiting and continue to do so for over three hours. It is heartbreaking to watch your child suffer knowing that there is nothing you can do to help. After two months and five severe reactions, doctors took her off all solid food until her 1st birthday, and increased the amount of formula she was to be given to compensate.  We live in Maine, but until June 2006, my husband worked for a Massachusetts-based company and our Massachusetts insurance policy covered the cost of Neocate. At the time we didn’t realize that Massachusetts is one of only six states that require insurance companies to cover the cost of elemental formulas (MA Chapter 176A: Section 8L).  My husband then got a new position in Maine and our insurance switched to a Maine policy. The insurance company told me that they did not cover the cost of infant formula unless it was administered via a feeding tube or mandated by state law.  Despite having a doctor’s prescription and letters that had been written by two Pediatricians, two Pediatric Allergists and a Pediatric Gastroenterologist, they insisted they would not cover Neocate.  Since Bryanna can drink the formula in a bottle or cup and we refused to put her through unnecessary surgery to have a tube inserted in her stomach, they denied our claim.

Read more here.