When Diana Lemon’s 12-year old daughter, Dream, was born with Sickle Cell Anemia it was the start of a very long and difficult journey for this single mom and her only child. In December 2014 Dream received a stem cell transplant as part of her treatment. The transplant went well, but there was still so much more ahead of them.
Following the transplant, Dream remained in the hospital for several months while doctors stabilized her immune system. While there, Dream had a Central Venous Catheter, commonly called a central line, inserted. This is a long, thin, flexible tube used to give medicines, fluids, nutrients, etc. over a long period of time which is inserted into a large vein near the heart. This central line has very strict care requirements and, in fact, in NY State, only a Registered Nurse can legally take care of a central venous line in a medical facility. While Dream was in the hospital, her central line was cared for by nurses. As preparations were under way to release Dream from the hospital, Diana voiced her concern that she did not have the ability or training to care for Dream’s central line at home and she requested the assistance of a trained medical professional to help her. This request was denied by the insurance company because it was “not deemed medically necessary.” Diana was told she could do it. “How was I to go home and suddenly be a nurse??” she asked.
Diana refused to leave the hospital until her daughter received the help she needed. With the assistance of her NY State Senator, David Carlucci, Diana was finally able to get the professional medical care for Dream that she needed at home. Diana vowed that once Dream was healthy and happy and back in school, she would do whatever was in her power to help other families so they would never have to go through the same battle she did. That’s how Dream Law became her goal.
Friends of Karen, an organization which supports critically-ill children and their families in the New York Tri-State area by providing financial, emotional and day-to-day assistance, supported Diana and Dream throughout Dream’s treatment. They continue to work with Diana to make Dream Law a reality. As a lifeline of support for close to 15,000 children and their families since 1978, Friends of Karen knows that parents are burdened with the daunting responsibility of their child’s outpatient medical care. The additional burden of caring for a central line is a task most parents are not trained or confident to perform. It is medically complicated and a simple mistake or an honest oversight can lead to many complications. It is for this reason that Friends of Karen supports Diana’s campaign to amend the public health law.
With the help of NY State Representative, Sandy Galef, and NY State Senator David Carlucci, Bill #S1165 (Dream Bill) is about to go before the New York State Senate. This bill would add an amendment to the Public Health Law to deem that a central venous line is “medically necessary” and, therefore, “to ensure as part of discharge planning for transplant patients with a central venous line, the designated caregiver shall be consulted on his or her capabilities and limitations in administering medications and providing proper central venous line care.” Dream Bill is poised to become Dream Law but still needs more public support.
If you would like to help support Dream Law, here’s what you can do: Call, write and/or email NY State Senator, Kemp Hannon, Chair of the NY Senate Health Committee and ask him to support this bill and share with your friends and ask them to do the same (#DreamLaw2017).
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