Mom of daughter with sickle cell disease lobbies for health insurance bill

<p>A doting parent who has given all she has to save her only child is embarking on a new mission to not only help other moms like her, but to change a state law along the way.&nbsp;</p>

News 12 Staff

May 8, 2017, 10:33 PM

Updated 2,563 days ago

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Mom of daughter with sickle cell disease lobbies for health insurance bill
A doting parent who has given all she has to save her only child is embarking on a new mission to not only help other moms like her, but to change a state law along the way.
Diana Lemon's 12-year-old daughter Dream Shepard was born with the life-threatening sickle cell disease. The disease caused Dream to have a stroke when Dream was 5 years old. In the years following the stroke, Dream underwent transfusions and chemotherapy. Lemon donated her stem cells two years ago for a transplant surgery that ultimately saved Dream's life.
After four months in the hospital, Dream was able to come home.
"She left with 12 hours of IV infusion, two different medicines that ran over an hour, so you’re talking 12 to 14 hours infusion coming home," says Lemon.
Those fluids had to be administered through an IV in the heart called a central line. Lemon says she tried to get the insurance companies to provide a nurse at home to administer the IVs, but was rejected and told it was not medically necessary.
"If something happens to central line and parents don't know what to do, we are talking life and death, we are talking infection," she says.
Through the help of local lawmakers and the nonprofit Friends of Karen, they finally got the medical help they needed, allowing Dream to heal at home.
Lemon says she is now a mom on a mission, fighting for a new bill that would make New York one of the first states to require insurance companies to pay for treatment at home by professionals instead of untrained parents.
Lemon lobbied Monday on the steps of the state capitol.
Dream's Law is currently under review in the state Senate and Assembly's health committees.
A floor vote has not yet been scheduled, but the bill's sponsors, Assemblywoman Sandra Galef and Sen. David Carlucci, are pushing for one soon.


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