Hi Everyone! This is important news that we hope you read! The New York Milk bank is trying to get the NY State Legislature to pass a bill to allow Medicaid reimbursements for preemies who need donor breast milk to survive. A Change.org petition has been launched at https://www.change.org/p/
It needs 10,000 signatures soon this week to convince the state senate that this needs to be a priority. They go home for the summer on June 16th and dozens of preemies will die before they reconvene in the fall. ~Rebecca Conroy, Editor of A Child Grows in Brooklyn
Nickolas Bell weighed just two pounds when he was born 14 weeks premature last year, but he and his twin were thriving in the care of Dr. Boriana Parvez, a neonatologist at Westchester Medical Center.
Dr. Parvez prescribes donated human milk to preemies whose mothers are unable to nurse.
But the tiny twin brothers had to be switched to formula so they could be moved to a NICU near the family’s home in Middletown, NY that didn’t have a way to cover the cost of donor milk.
Almost immediately after he was given formula, Nickolas developed a devastating intestinal disease called necrotizing enterocolitis or NEC, which strikes one out of six preemies who are given formula or cow’s milk.
Nickolas died June 30, 2015. He was five weeks old.
Emily Bell and son Nickolas in the photograph taken hours before his death from NEC.
“A huge part of my heart was lost that night,” Emily Bell said. “My husband and I lost a son we wanted for so long and our surviving son lost a brother he will never get to know.”
The New York State legislature only has until June 16 to pass a bill that would direct Medicaid to reimburse hospitals that give donated pasteurized human breast milk to premature babies who are struggling to survive.
And Emily Bell and surviving twin Dylan, who turned one in May, are now on the frontline of the campaign to save other infants from the deadly disease. They will travel to Albany this Wednesday, June 8, to present temporary Senate President John J. Flanagan (R) with a petition that as of Sunday had more than 7,500 names collected in just three days.
The bill has been languishing in a senate committee for months and there is mounting concern that it won’t be passed before the legislative sessions ends on June 16th.
The petition, sponsored by The New York Milk Bank, is at https://www.change.org/p/
Sen. Flanagan, in his role as temporary president, has the power to bring the bill to a vote as as the ranking member of the Republican controlled Senate could successfully gain its passage. The bill has been passed in the state Assembly, where it was sponsored by Assemblywoman Michaelle C. Solages (D).
The NY Milk Bank is also asking New York residents in a growing twitter and Facebook campaign to call Flanagan’s office and ask him to pass the Nickolas Bill, which is officially called S7570 and was sponsored by Sen. Kemp Hannon, the chair of the Senate’s Health Committee. Emily Bell said she is pushing an empty stroller through the capital corridors as a symbol of her family’s painful loss. Dr. Parvez, who is a founding board member of The New York Milk Bank, and Julie Bouchet-Horwitz, the non-profit’s executive director and a lactation specialist, will join Bell along with other mothers who support the measure. They will be meeting at 11 a.m. in the third floor lobby of the legislative office building at 198 State Street.
Donor human breast milk costs just $4.50 an ounce, which covers the costs of blood tests for donor moms, testing the milk, pasturing and bottling it, and delivering it to the NICUs. That’s an overwhelming cost for many young families. The New York Milk Bank is developing a statewide network of donors and recipients to fill a growing demand. Most hospitals can’t prescribe donor milk because Medicaid won’t cover the cost — although it will cover the cost of a $300,000 operation and countless dollars in after care for infants who are struck by the disease.
With passage of a law to enable Medicaid coverage for donor milk, all NICUs could prescribe it for their endangered preemies. The NY Milk Bank is calling the pending bill the Nickolas Bill, after Emily’s firstborn twin, Nickolas Bell. The Change.org petition asks Hannon, who has shepherded this bill out of the Health committee he chairs, and the Flanagan to make it a priority to pass this bill before June 16th, 2016.
If the bill fails to pass in this session, on average nine premature infants will continue to die from this intestinal disease every month in New York State. Those who survive will require surgery that can cost Medicaid $300,000, and countless additional dollars and suffering in ongoing healthcare costs.
Passing this bill will save the taxpayers of New York money, but more importantly, it will immediately save lives, and it will prevent other parents from suffering a devastating loss.
“The passing of the Nickolas bill is so important! It can help prevent so many babies from suffering the way Nickolas did,” Emily said. “The Nickolas bill means everything to me. It is unfortunately too late for my son but it’s not too late for other babies.”
For additional information or to join Emily contact The New York Milk Bank atjbouchet@nymilkbank.org or martyrosen@aol.com