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Minutes for HB2103 - Committee on Insurance
Short Title
Providing insurance coverage for amino acid-based elemental formula.
Minutes Content for Tue, Jan 31, 2017
Chairperson Vickrey opened the hearing (proponent and neutral) on HB 2103.
Representative Ed Trimmer said he supported the bill. He explained a number of people suffering from the affliction requiring amino acid-based formula was small but the consequences were large including financial burdens, and loss of life. He said he believed the coverage cost can be spread among the pool of insured, lowering the cost.(Attachment 12).
Andrea Jones testified she was a mother of a child, Caden 13, with Eosinophilic Disease. She said 18 months ago he went from an active, normal child to constantly struggling due to inability to swallow. She described what happened to her son, their financial difficulties and the the foods he could and could not eat. She said although the amino acid-based formula was FDIC approved it was not covered under their insurance. She said Caden could only consume the formula and estimated the cost of the formula was $1,500 per month. Their only options were to quit their jobs, sell their house and go on Medicaid or they could run up their credit cards. She concluded that no family should have to choose between feeding their child or suffering financial difficulties (Attachment 13)
Caden Jones testified in support of the bill. He described the problems he had with Eosinophilic Esophagitis including: inability to swallow, lack of energy and not being able to attend school or participate in social activities. He said his family could not afford to pay for his care (Attachment 14)
Kellie Crnkovich testified in support of the bill. She said her son, Joey, suffered from the same disease but it affected his esophagus, colon and his ileum. His symptoms were severe abdominal pain, weakness and weight loss. She described the medical examinations done to try and diagnosis what was wrong and the medicine and food-based treatments they tried. She said he drank the amino acid formula Neocate E028 which had helped. She said she feared the doctors may take him off all foods, except for the formula, to help him heal which would cost them $2,000 per month. She said insurance did not cover any of the cost. She concluded by saying Colorado, Nebraska and Missouri have passed bills to help pay the cost. This made 14 states that did cover the cost (Attachment 15)
Joey Crnkovich testified in support of the bill. He said when he first became ill with Eosinophilic Gastrointestinal disease he thought it was just growing pains. Then it became worse and he thought he was going crazy. When he was finally diagnosed he was happy it had a name but it was expensive to treat.
Dr. Stephanie Page testified she was in support of the bill. As a pediatric gastroenterologist physician she was passionate about taking care of kids. She said she cared for children with food protein induced gastroenteritis syndrome and short bowel syndrome. Dr. Page described the disease, how it presented and how it was treated: dietary elimination and steroids. She said the disease primarily affected males and was inherited. She explained patients' difficulties in obtaining nutrition and the impact on their lives. She said using the amino acid-based formula helped 97% of patients. She said she would like to put all her affected patients on the formula but can't because of the cost. She said only patients using a nasogastric tube or surgical Gtube were covered under insurance. She concluded by saying that although there was a small number of children with the disease the impact was high (Attachment 16)
Joy Meyers, The FRIES Foundation; Michelle Black; Ellyn Kodroff, CURED; Jennifer Gregg; and Joy Sloan provided written testimony (Attachment 17), ((Attachment 18), (Attachment 19), (Attachment 20), and (Attachment 21)
Chairman Vickrey asked if there were any other proponents. They were none. He asked if the members had any questions.
Representative Finney asked Dr. Page how many of her patients had this disease and if WIC covered infant formula.
Dr. Page said she did not have the exact figures but that most of the adult patients elected to have periodic esophagus dilation to help the problem. WIC provided formula up to age 5. She explained the disease didn't go away but as patients became older the symptoms may change.
Representative Elliot asked if the supplement was available would other medication be needed.
Dr. Page answered some of her patients do require dual therapy. Other patients had to have the formula because steroids didn't work. Also, steroids had side effects.
Representative. Parker asked about surgery versus the supplement.
Dr. Page said it was better to keep the treatment simple. She added it was difficult for children to drink the same formula day after day.
Representative Dove asked how many companies were involved in manufacturing amino acid-based formula.
Dr. Page said she knows of two. There was one more that made infant formula up to age 2.
Representative Hodge asked if this was a relatively new diagnosis and what people did before.
Dr. Page said the first paper was written in 1995 about ten kids with re-flux symptoms. They already had surgery and as a last effort, they were put on acid-based formula. All became better but their symptoms returned after regular food was reintroduced. The next ten years were spent researching with the last ten attempting to treat the disease. She said although there was a small population with the disease, the numbers had risen.
Representative Hodge asked what was done to treat it before this.
Dr. Page said patients were just prescribed higher and higher doses of steroids.
Chairperson Vickrey closed the hearing on HB 2103.
