Change in national listing criteria for CHD patient’s waiting for heart transplants

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Jaclyn Barbagallo started this petition to UNOS: United Network for Organ Sharing

On October 18, 2018 UNOS, the national committee that oversees all organ transplants in the U.S., drastically changed its listing criteria for adult heart transplant recipients. The list had been a 3 level criteria and has now been changed to 6 levels. The individuals on the waiting list during this time dropped drastically to a lower category. These changes primarily impact the congenital heart disease patients. Now, anyone with a congenital heart diagnosis automatically falls to a level 4 on the new waiting list criteria. Unless, they have drastic comorbidities or are on life support, they will remain a status 4 with a wait time that is essentially unknown. I’ve learned this from personal experience as my sister began her wait for a heart back in August listed as a status 1A (the highest/most urgent group), on October 18th when these changes took place she was immediately dropped down to a level 4 based on her congenital heart diagnosis. I strongly feel that UNOS- United Network for Organ Sharing, needs to reassess these changes immediately... especially for the CHD community. Please help me in motivating UNOS to take another look at their recent listing changes. 

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