CONCERNING FACTS:

• In 2021, 25% of living organ donors were rejected for insurance coverage or charged higher premiums
• Only 23 states provide protection from insurance discrimination for living organ donors
• Only 12 states ensure that private employees have protected leave for living organ donors
• Only 2 states provide FMLA coverage with paid leave for living organ donors
• The lack of protection for living donors impacts all children awaiting liver transplant, but the impact is worse for Black and Hispanic children who are half as likely to receive a liver from a living donor

How can we encourage living donation – and save these children’s lives? The Living Donor Protection Act of 2021 would promote living organ donation and protect donors from insurance discrimination. The Living Donor Protection Act will:

1. Prohibit the denial of coverage or an increase in insurance premiums for life, disability or long-term care for living donors.
2. Allow living organ donation surgery as a qualifying serious health condition under the Family and Medical Leave Act (FMLA) to allow for recovery after surgery.
3. Update materials for public education on living organ donation and the protections related to insurance from the Living Donor Protection Act.
4. Equalize the field for children, ensuring no child has worse outcomes based on the state they live in. It would further prevent children from dying on the waitlist, and protect loved ones who donate a part of their liver to save a life.

ASK:
The Society of Pediatric Liver Transplantation (SPLIT), an organization formed with the mission to improve outcomes for children receiving liver transplantation, along with SPLIT’s Patient and Family Engaged Partners, urges Congress to pass the Living Donor Protection Act of 2021 to allow children to have equal and timely access to a life-saving liver transplant while also protecting the heroes who choose to donate their organs. No child should struggle to receive a life-saving surgery, and no family should struggle to cope with managing higher costs based on a decision to save a child’s life.

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The Society of Pediatric Liver Transplantation (SPLIT) was formed in 1995 with the mission to improve outcomes for children receiving liver transplantation. Our members represent more than 40 transplant centers across North America spanning 27 states and Canada. Collectively, we have cared for over 3,400 liver transplant children. We have seen these children suffer and implore Congress to pass the Living Donor Protect act today. Please contact Dr. Noelle Ebel directly at nebel@stanford.edu with any questions or requests.

SPLIT Patient, Family and Engaged Partners (PFEP) provides pediatric transplant families hope through resources, support and advocacy. It is our mission to help bridge the gap between patients, families, doctors, and the community to help improve the outcome of pediatric liver transplantation.