Pass the "Nickolas Bill" so our tiniest newborns don't die.
On to the Governor's desk.
Our bill is now before New York Gov. Andrew Cuomo. We are hopeful that the governor will sign the bill into law and on Jan. 1, Medicaid will pay for pasteurized donor breast milk for premature infants in New York State whose moms are unable to nurse them.
Thank you, state Sen. Kemp Hannon for getting this bill out of committee and on to the senate floor for a 61-0 unanimous vote, and for graciously accepting our petition with 11,000 names.
Thank you Assemblywoman Michaelle Solages, and the bill's many co-sponsors in the state Assembly, who rallied with such conviction around this measure.
Here at the New York Milk Bank we're also so grateful to Emily Bell, who took time off from work to travel to Albany last week and share her very powerful and heartbreaking experience with state lawmakers. She shares our conviction that every premature infant should have access to pasteurized donor breast milk when their mother is not yet able to nurse.
We will continue to ask for your signatures until Gov. Cuomo signs this important bill into law, and we thank you for sharing our link on Facebook. Every additional signature supports our efforts to make pasteurized donor breast milk available to every premature infant in our state.
If you are not from New York, we still ask you to sign. The strength of our support can only bolster efforts in other states to make donor milk available to infants whose mothers are unable to nurse.
Nickolas Bell (above, with his mom) weighed just two pounds when he was born 14 weeks premature last year, but both infants were thriving in the care of Dr. Boriana Parvez, a neonatologist at Westchester Medical Center who prescribes donated human milk to preemies whose mothers are unable to nurse.
The tiny twin brothers had to be switched to formula so they could be moved to a NICU near the family's home and they 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 infant formula.
Nickolas died June 30, 2015. He was five weeks old.
"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.
The milk costs just $4.50 an ounce, but it's an overwhelming cost for many young families. Our non-profit organization, The New York Milk Bank, is currently 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. We're calling this pending bill the Nickolas Bill, after Emily's firstborn twin, Nickolas Bell, and we're asking state Sen. Kemp Hannon, who has shepherded this bill out of the Health committee he chairs, and the temporary Senate President John J. Flanagan, from Long Island, to make it a priority to pass this bill before June 16th, 2016.
We are so grateful to Sen. Hannon for taking the bill this far. But these are hectic final days in Albany, and we're very concerned that if we don't get immediate senate approval the bill could languish until fall.
Please don't let that happen.
A delay means more of our babies will needlessly die this year -- NINE premature infants die from this intestinal disease every month in New York State. Many more survive and require surgery that can cost Medicaid $300,000, and countless additional dollars and suffering in ongoing healthcare costs.
A delay means we could have dozens of newly bereaved young mothers, who will needlessly lose their newborns to this deadly intestinal disease, joining in with us at the New York State Capitol in the fall to ask again for the passage of this bill.
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."
Pass New York's "Nicholas's Bill" so our tiniest newborns don't die.
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