A Brewster girl with a rare eating disorder has been the focus of fund-raising activities, as well as legislative initiatives. Here’s an announcement about an upcoming event involving State Sen. Greg Ball and a proposed new law. From the senator’s office:
After a four year struggle with the legislature and insurance industry, Senator Greg Ball (R, C – Patterson) has passed Hannah’s Law (S5034A) through the New York State Senate. The legislation is named after Yorktown resident, Hannah Devane. Hannah is a seven year old girl who suffers from eosinophilic esophagitis, a potentially fatal condition that makes it impossible for her to eat most foods.
Children with eosinophilic esophagitis and similar disorders 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. 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.
Hannah’s medical insurance provider already provides coverage for the cost of enteral formulas, but only under conditions that require tube feeding, and extremely evasive, 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 use a feeding tube.
“I came to Albany to lower taxes and create jobs, but when the Devanes come to me, I made it my mission to help Hannah and all the children with eosinophilic esophagitis in New York State”, said Senator Greg Ball. “Hannah is the cutest and toughest little girl I know and is an outstanding, giving member of our community. Hannah has volunteered at events like my ‘Veterans Thanksgiving Dinner’ and is an impressive little girl. Passing this bill in the Senate brings New York State one step closer to ensuring that thousands of families are never again victimized by the system, like the Devane family.”
“Hannah’s Law” will amend the insurance law and require certain health insurance policies to include coverage for the cost of enteral formulas for the treatment of eosinophilic esophagitis and related eosinophilic disorders.
“We are grateful and beyond words for this legislation to finally start moving. Thank you doesn’t say enough to Senator Greg Ball and his Staff for all the endless work they have done,” said Hannah’s mom, Jessie Devane. “This bill will give parents the peace of mind of knowing they can take care of their children without a financial burden.”
Join Senator Greg Ball at a Fundraiser for Hannah on Monday, September 24th? from 7PM – 9PM at Anthony’s Coal Fired Pizza 264 Main Street, White Plains, N.Y. To RSVP please email: firstname.lastname@example.org.