Hannah Devane, an 8-year-old Yorktown girl who has inspired politicians to fight for passing a legislature that will amend the insurance law, suffers from eosinophilic esophagitis. It is a potentially fatal condition that makes it impossible for her to eat most foods.
In fact, she is not supposed to eat any foods at all.
She can only obtain nourishment from special, enteral formulas, which in some cases may be ingested orally, but in other circumstances must be administered via a feeding tube.
"When she is feeling sick she doesn't understand why it happens so often and why she can't be like everyone else," her mother Jessie Devane said. "She just wants to be like her friends. We strive everyday to give her as normal of a life as possible."
In the case of Hannah, the life sustaining formula can be taken orally and comes with a cost of approximately $1,200 per month, or $14,400 annually.
"The most challenging for us is that Hannah won't drink her formula in front of others and that causes difficulty sometimes in getting the nutrition she needs," Devane said.
In 2008, Senator Greg Ball (R, C – Patterson) first introduced Hannah’s Law, the legislature that seeks to amend the insurance law and require certain health insurance policies to include coverage for the cost of enteral formulas for the treatment of the potentially fatal condition, when he was an assemblyman.
After a four-year struggle the bill was taken up for a vote in the New York State Senate in May, 2012 and successfully passed. However, the bill failed to make it out of the Assembly Insurance Committee.
This week, the bill passed through both the New York State Senate and Assembly and it is now awaiting the Governor’s signature.
“Hannah is the cutest and toughest little girl I know and is an outstanding, giving member of our community,” Ball said. "After years of working on this legislation, we have finally passed it to ensure that thousands of families are never again victimized by the system, like the Devane family.”
Hannah's mother said that although the passage of the bill will not affect their insurance coverage – they have a self insured policy – she and her family are thrilled that this is going to help other families in the state.
"During this whole process we have brought about awareness of the disease and have made some positive changes in the health care system," Devane said. "We made a difference and that is what is most important here."
Hannah’s medical insurance already provides coverage for the cost of enteral formulas, but only under conditions that require tube feeding, and extremely invasive, life-altering procedure.
Currently the insurance companies are making parents decide between incurring the significant out-of-pocket costs for the enteral formula needed, or forcing their children to use a feeding tube.
Hannah’s Law was sponsored in the New York State Assembly by Assemblywoman Amy Paulin (D-Scarsdale).
“This legislation is critical because it means that children with eosinophilic esophogitis will no longer have to use an invasive feeding tube simply because that is the only method their insurance company covers,” Paulin said. “ I thank Senator Ball for work in passing this legislation. I am very happy that my colleagues in the Assembly have voted to help those children whose families cannot afford the out-of-pocket cost of oral formula to finally have access to it.”
Hannah's mother said that although there was nothing she can do to help her daughter, she had used that frustration in a positive way and fought to help families who are dealing with the same issues with the insurance companies.
"I am happy that this will finally be a reality and we can now take care of our children and not have to worry about the financial burdens," Devane said. "Sen. Ball and his staff have fought tirelessly for us and for that we will forever be grateful."
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