My son, Zane, can't eat food. Any of it. For years, he had persistent vomiting that sometimes lasted all day and night. He stopped growing and began losing weight. When he was three years old, Zane once asked me if he could just lick a slice of bread. I was completely helpless, and it took a year and a half to get a diagnosis.
Zane was born with a rare genetic disorder: Eosinophilic Gastro-Intestinal Disorder. Eosinophils are white blood cells whose sole purpose is to fight off harmful foreign substances. For children born with EGIDs, the body perceives food as a harmful foreign substance, and eosinophils attack their digestive system. Many with the disease are on extremely restrictive diets. For a small few like Zane, so-called "medical food" -- a prescription formula -- is their main source of nutrition. It is the only FDA-approved medicine on the market to treat EGIDs.
Current Connecticut law requires insurance coverage of medical food only for patients with Cystic Fibrosis or another digestive disorder called PKU and only up to age 12.
Our group, THRIVE!, represents children suffering from EGIDs and another digestive immune disorder, FPIES, who rely medical food to live. We are trying to expand current state law to require coverage of kids with EGIDs.
Approximately 50 families in Connecticut would potentially be impacted. THRIVE! represents 30 families, all of us are on self-funded insurance plans, ensuring we would not affect state budgets. Under current law, it can take months of appeals to get our children the medical food they need to live. Members in our group pay on average $53 per can for medical food. My insurance company required us to pay $115 a can for some time, and Zane needs a can a day. We could get the medical food directly from the pharmaceutical company for only $40 a can, but it is an out-of-network provider. So, insurance companies are definitely profiting from this.
The other undesirable effect of this law is that there is now an underground market where parents who have coverage sell their extra cans of medical food under the table to those who don't have coverage. It is a practice filled with risks. Medical food could be contaminated, tampered with or expired.
These children need this prescription formula to live. Without it, the medical consequences would be far more costly for both insurance companies and the state.
Please contact state Rep. Robert Megna, D-New Haven, at 860-240-8585 and kindly ask him to support H.B. 5432 to expand medical food coverage to children with EGIDs.