Ossining, NY – Assemblywoman Sandy Galef, Senator David Carlucci, and advocates held a press conference on Thursday, ahead of Mother’s Day, to call on the Governor to sign and codify Dream’s Law (A.212/S.474). The bill ensures patients discharged from the hospital with a Central Venous Line (CVL) have continued and safe care provided by a home healthcare service or comparable program.
Galef and Carlucci were joined by Diana Lemon, whose daughter, Dream Shepard, was the inspiration for this legislation. Dream had to get a Central Venus Line (CVL) following a stem cell transplant to battle Sickle Cell Disease in December of 2014. However, when Dream left the hospital, her insurance told her mother that a caretaker for a CVL line was not medically necessary and would not be covered by insurance. Dream's mother could not afford a caretaker and did not have the proper medical knowledge to care for her daughter. In Dream's case, the CVL went directly to her heart, and in NYS Health Facilities, only registered nurses are allowed to administer IV medications with the use of a CVL. The danger here, in forcing Diana to be her daughter’s caretaker, is that a CVL can easily get infected, if not cared for properly by someone adequately trained.
To prevent this situation from happening to other families leaving the hospital, Diana and Dream have made it their mission to work with lawmakers and have this legislation signed into law. The bill was passed in the New York State Assembly on January 23rd and in the State Senate on May 6th. Ahead of Mother’s Day, lawmakers want to highlight the advocacy of Dream’s mother and the importance of this legislation for families.
“This bill will bring much comfort to families and patients who require trained caretakers after being discharged from a hospital,” said Assemblywoman Galef. “The situation Diana found herself in is remarkably common. Venous lines are used after a number of surgeries that affect thousands of people statewide. Beforehand, it was unclear how New York State chose to provide support to people struggling with proper venous line care. This bill assures proper care will be provided, and families will no longer have a cause for stress or financial concern.”
"No one who is lucky enough to receive a life-saving transplant, like Dream should be sent home without the proper care,” said Senator David Carlucci. “Only through Diana's fight to help her daughter survive is Dream here today. We must prevent these types of hardships for other families. I call on the Governor to sign this bill into law so patients are put first and cared for safely at home."
“I’m a utterly thankful that Dream’s Law has been passed and our story isn’t just about our difficult journey anymore but how we paid it forward for other families to have one less barrier in health care,” said Diana Lemon.
“I believe having professional nursing support in the home to care for children being discharged from a hospital with a central venous line (CVL) will improve health outcomes for children with cancer, sickle cell disease and other life threatening illnesses requiring a CVL,” said Rhonda Ryan, Director of the Family Support Program for Friends of Karen.
Thousands of New Yorkers do and will require a CVL following medical procedures like chemotherapy, dialysis, and vein inflammation. Lawmakers note, that a family member, like Diana, should never have to choose between caring for their loved one and going to work. This bill ensures families are not financially burdened by having to provide post-discharge care, but can rest assured their loved one is treated by a trained health professional.