Enact the "Dream law" Bill S1165/ A5514 for all Transplant Patients 2018

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TITLE OF BILL : An act to amend the public health law, in relation to deeming central venous lines as medically necessary

Dream Shepherd is an 12-year-old girl who has courageously battled Sickle Cell Disease and who suffered a stroke in 2010 at the age of five.

In December 2014, as part of a study, Dream received a stem cell transplant as part of her treatment plan and fight against Sickle Cell Disease. After the transplant she remained in the hospital for several months, while Doctors worked to stabilize her immune system, which was crucial to her discharge and transplant success. Additionally while in the hospital Dream had a Central Venous Line placed into her heart.

The Central Venous Line has strict care requirements. In New York State Health Facilities only Registered Nurses are legally allowed to administer I.V. medications with use of a Central Venous Line; which have to be properly managed to ensure that Dream, and other's with a Central Line, do not acquire infections, especially if immuno-compromised. This central line goes directly into the right atrium of the heart, and requires immediate action should there be a disconnection for any reason as a patient with this type of line can exsanguinate should this go unmonitored or unnoticed.

In addition to the high risk of infections, other complications of Central Venous Lines include Air Embolism, Pneumothorax, Pinch-off, Syndrome, Drug Precipitates, Thrombosis, Catheter Occlusion, Catheter Malposition, and Sepsis a severe blood infection caused by bacteria, viruses, and fungi. Sepsis is extremely serious and can be life-threatening.

 Due to the high potential for dangerous infections, as part of discharge planning, Dream's mother, who is not a medical professional, made a request for a skilled private duty nurse to care for Dream's central venous line. This request was denied by the insurance company as it was "not deemed medically necessary." Due to this rejection by the insurance company, the hospital informed Dream's mother, that she was required to provide the necessary care to Dream's central venous line. Not ensuring that Dream would have the correct and proper skilled nurse to provide the care after discharge which could have caused irreparable harm, including the worst outcome. Attempting to force the mother to provide the care would have required her to lose her job and source of income, along with saddling her with the anxiety of overseeing the medical attention that if not done properly, could lead to the loss of her daughter's life. That is a position no family member or friend should ever be in.



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