I began experiencing unusual gastrointestinal symptoms around 1990 which included severe stomach aches, bouts of diarrhea and frequent vomiting. It took six years of going from doctor to doctor until I was given the diagnosis of what was in 1996 a very rare disease, eosinophilic gastroenteritis. With few known treatment options, I tried a multitude of drugs including prednisone and interferon. In 2000, a doctor at the Mayo Clinic theorized that I was possibly allergic to ALL foods. In turn, he had me stop eating all food and had me commence a diet based exclusively on elemental formula. To the amazement of everyone, within days of starting the elemental diet my symptoms dissipated. I remained on elemental formula for three years until I began a compassionate use protocol for an experimental drug which allowed me to resume eating food. At present, I remain on the experimental drug sporadically taking a day off food as my symptoms dictate.
I had to struggle through the early 2000s to get Blue Cross Blue Shield of Minnesota to pay for my elemental formula. I had to file annual appeals with the insurance company’s medical review board in order to get coverage. In 2007, I joined a group of fellow food-allergy sufferers to bring forth a bill before the Minnesota Legislature to require insurance companies throughout the state to cover elemental formulas and gave my personal testimony. The insurance companies complied and elemental formulas are now covered in Minnesota.
As I’m approaching the age of 65 and soon to be eligible for Medicare, I will lose my hard fought insurance coverage for elemental formula. Medicare’s cumbersome coverage rules require that elemental formula be used for 100% of a person’s diet and be given via a feeding tube. It is absurd to think that they will pay for a feeding tube which is a surgical procedure and can cause complications rather than allowing individuals to drink it. Once on Medicare, I will not have insurance coverage for when I need to use elemental formula. The cost for formula can run upwards of $2,000 per month.
Therefore, I am appealing to Congress to pass this Bill and force all insurance companies and Medicare to pay for life sustaining elemental formula. Imagine not being able to eat a morsel of food for three years. No one should have to endure this and go bankrupt in the process. Please help me fight for this cause and pass this Bill. It will make life so much easier for the limited number of people who depend on elemental formula for their physical well-being and survival.
I am presently on Mepolizumab (anti IL5) which is allowing me to eat food with relatively few issues. I still keep Neocate elemental formula on reserve in case of a problem but am fortunate that at present I am not dependent on it. However, I will turn 65 in August 2022 and transition over to Medicare. At that point, I will no longer have any coverage for formula should I need it due to the cumbersome requirements of Medicare.