About Us...

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 came 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 or 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 was 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. 

Neocate is not on most store shelves. Stores choose not to keep it in stock because of the cost.  Neocate is ordered through a pharmacy or ordered directly from the manufacturer. Although not a prescription only formula, doctors do write prescriptions for these formulas to treat various disorders. The FDA classifies Neocate as an "Exempt" infant formula (21 CFR 107).

Subpart C – Exempt Infant Formulas 

(c) Infant formulas not generally available at the retail level. (1) These exempt infant formulas are not generally found on retail shelves for general consumer purchase. Such formulas typically are prescribed by a physician, and must be requested from a pharmacist, or are distributed directly to institutions such as hospitals, clinics, and State or Federal agencies. Such formulas are also generally represented and labeled solely to provide dietary management for specific diseases or conditions that are clinically serious or life-threatening and generally are required for prolonged periods of time.

At fourteen months, most children are off formula altogether and are eating regular meals. Unfortunately, Bryanna was eating almost no solid food and Neocate was her only source of sustenance.  Neocate was costing us in upwards of $700/month.  That was our out of pocket expense, since insurance didn't pay. It was costing more to feed Bryanna than to feed my husband and me.

When I was first told that our insurance wouldn't cover the cost, I was shocked. The formula is covered (for qualifying families) by MaineCare and WIC. We do not qualify for these programs.  This formula is not just food for Bryanna, it is TREATMENT for a medical condition. I was astounded an insurance company would deny something that is necessary to sustain her life.  Neocate was prescribed by her doctors and obviously made her healthier and less likely to incur hospital charges due to severe allergic reactions. I hadn't even thought that a state would need to have a law requiring insurance to pay for it. Worse, I couldn't believe that Maine didn't have such a law and that only six states in the United States did. 

Desperate for help, I started contacting everyone I could think of.  I reached out to Mr. Glen Griswold (Director - Consumer Health Care Division - Maine Bureau of Insurance), Mr. Alessandro A. Iuppa, (Superintendent of Insurance - Maine Bureau of Insurance) and Governor John Baldacci. It was suggested I work to have legislation passed.

Anxious to raise awareness and try to prevent other families from experiencing the financial hardship and insurance company bureaucracy my family endured,  I decided to find a sponsor for this important legislation.   

I knew that this bill wouldn't be passed in time to help our family, but I didn't want any other families in Maine to endure such emotional and financial struggle. 

I am so very happy to say that on April 11, 2008 LD 658 was signed by Governor Baldacci and beginning in January 2009, middle income families struggling with the hardship of raising a child with severe food allergies or other digestive disorders will have their child treatments covered.

I thank everyone for their help and support in getting LD 658 signed into law.

Regards,

Kate

Founder - BB*PHI