Photo caption: Meet Marlee, from Waco, Texas. She has been on the US transplant waiting list since February 2019.

This petition is a companion to the printable open letter to the community.

Children are the world’s most valuable resource and its best hope for the future. -John F. Kennedy



In the US, children die waiting for liver transplants.

1 in 10 infants and 1 in 20 children who are awaiting liver transplant in the United States die on the waitlist.(1) More than 10 years ago, pediatric advocates started calling upon the United Network for Organ Sharing (UNOS), which operates the national Organ Procurement and Transplantation Network (OPTN), to address the preventable deaths of these children.(2)

The current system deprioritizes children.

Children are not given the chance to compete against adults for livers because the calculation we use to decide their place in line for a liver significantly underestimates their risk of death.(3) To make matters worse, although there are enough pediatric donor livers to transplant all children in this country who need liver transplants, current OPTN policy dictates that these pediatric livers first be offered to adults locally rather than to sicker, more critically ill children nationally.(4)

Adults get livers from children, rather than the other way around.

In a five-year period where 316 children died waiting for a liver, more than 1,500 adults were transplanted with a liver that came from a child.(4) Almost half of all livers from children are transplanted into adults; nearly 25% of these livers given to adults were never offered to a child.(5)

The global standard of care is to put children at the front of the line.

With the exception of the United States, most liver transplant systems in the world (United Kingdom, EuroTransplant, Canada, Argentina) definitively prioritize liver allocation to children, without detriment to adult recipients.(6)

We could prioritize children awaiting liver transplant in the US without impact to adults.

Modeling shows that prioritizing national sharing of pediatric donor livers for children would significantly decrease mortality for infants and children on the waitlist without significant change for adults.(7) Allocating to children first on the waitlist has the added benefit of increasing the likelihood of splitting a liver, allowing two patients to benefit from one organ.(8)

In 2018, after more than a decade of advocating for change, during which time more than 500 children died, the OPTN Board of Directors passed a new US liver distribution policy.

This new policy was the product of several years of collaboration and input from constituents across the spectrum of US transplantation. With support from across the liver transplant community, the OPTN Liver and Intestinal Transplantation Committee added changes in allocation that finally allowed for children to be prioritized for pediatric livers. This changes everything for children waiting for a liver transplant; all deceased donor pediatric livers are offered to every single child in the country before being offered to less critically ill adults. The new policy does not affect access to exception points; after being assigned scores, programs that care for children retain the ability to request any additional points they feel their patients need, and these requests will be reviewed and approved by a panel of national pediatric liver experts.

Although some aspects of the policy remain controversial, most stakeholders agreed that it was a step forward, particularly with regards to children. In 2019, a suit on behalf of several individual transplant programs and adult candidates awaiting liver transplantation was filed asserting that the approved 2018 policy would disadvantage patients in their specific geographic area, although no reference was made to the plight of children.



Changes went into place on May 14th, 2019. Within 72 hours of implementation, OPTN was been ordered by the federal court to reprogram the old system. After more than ten years of waiting, the positive change for the pediatric liver waitlist was quickly undone—in the interest of adults, with little to no thought for its impact upon children.

What can you do?



The OPTN pediatric liver priority policy passed in December 2018 was a step forward. You can support re-instituting this policy by raising awareness of the unintended consequences to children that would occur if we revert permanently to the prior policy without protecting this independent clause. Sign this letter and share it widely; reach out to your elected representatives and let them know that this is an issue that is important to you.



We cannot wait another ten years and lose the lives of another 500 children. We have a solution to this problem– and our children deserve it.

If you support our effort and sentiment, you can co-sign this petition yourself here at Change.org. If you are connected to transplant, please indicate your affiliation. Otherwise, any support is welcome.

References (as part of the full letter) are available at this link.

Signed:

Society for Pediatric Liver Transplantation (SPLIT) Executive Committee

Melissa McQueen, Pediatric Recipient Parent

Executive Director

Transplant Families



Starzl Network for Excellence in Pediatric Transplantation

Jen Lau (Pediatric Liver Recipient Parent) & Leadership

SPLIT Patient and Family Engaged Partners (PFEP)

Jasmine Hollingsworth

Pediatric Liver Recipient Parent

Founder & Board of Directors

Liver Mommas, Inc.

David Davenport

Executive Director

Transplants for Children

Joseph P. Hillenburg

Pediatric Recipient Parent/Advocate

Alyssa Hernandez

Pediatric Liver Recipient Parent

Regional Coordinator, NorCal Chapter

Transplant Families

Chris Klug Foundation



Rick Lofgren

President

Children’s Organ Transplant Association

Michelle Gilchrist

CEO

National Foundation for Transplants

Pediatric Community of Practice

American Society of Transplantation



North American Society of Pediatric Gastroenterology, Hepatology and Nutrition

George V. Mazariegos, MD

Director of Pediatric Transplantation

Hillman Center for Pediatric Transplantation

Children’s Hospital of Pittsburgh

Evelyn K. Hsu, MD

Medical Director, Liver Transplant Program

Seattle Children’s Hospital

Simon Horslen, MB ChB

Medical Director, Solid Organ Transplantation

Seattle Children’s Hospital

Nadia Ovchinsky, MD, MBA

Director, Pediatric Hepatology

Medical Director, Pediatric Liver Transplant

Children’s Hospital at Montefiore

Siragusa Transplantation Center

Ann & Robert H. Lurie Children’s Hospital of Chicago



Douglas Mogul, MD, MPH

Medical Director

Pediatric Liver Transplantation

Johns Hopkins University School of Medicine



John Bucuvalas, MD

Chief of the Division of Hepatology Department of Pediatrics

Mount Sinai Kravis Children's Hospital

Fellow, AASLD, Fellow, AST

Past Chair, SPLIT



Ronen Arnon, MD, MHA

Professor of Pediatrics

Medical Director

Pediatric Hepatology and Liver Transplantation

Mount Sinai Medical Center

Katryn Furuya

Medical Director of the Pediatric Liver Transplant Program

Mayo Clinic Children’s Center

Samar Ibrahim, MB ChB

Consultant, Division of Pediatric Gastroenterology & Hepatology

Assistant Professor of Pediatrics

Mayo Clinic Children’s Center

Julie K. Heimbach, MD

Surgical Director, Liver Transplantation

Mayo Clinic

Emily Perito, MD

Assistant Professor, Pediatrics

UCSF Benioff Children's Hospital

Sue Rhee, MD

Division Chief, Pediatric Gastroenterology, Hepatology and Nutrition

UCSF Benioff Children's Hospital

Sang-Mo Kang, MD

Associate Professor, Department of Surgery

UCSF Transplant and Transplant Surgery

John Roberts, MD

Professor of Surgery

UCSF Transplant and Transplant Surgery

Ryo Hirose, MD

Professor of Clinical Surgery

UCSF Transplant and Transplant Surgery

Pamela Valentino, MD, MSc, FRCP(C)

Assistant Professor of Pediatrics

Yale-New Haven Transplantation Center

Ramesh K. Batra, MD, MBBS, MA, FRCS

Assistant Professor of Surgery (Transplant)

Yale-New Haven Transplantation Center

Kathleen M. Campbell, MD

Division of Pediatric Gastroenterology, Hepatology & Nutrition

Medical Director, A4N Transplant & Surgery Unit

Cincinnati Children’s Hospital Medical Center

Jaimie D. Nathan, MD, FACS

Associate Professor of Surgery and Pediatrics

Associate Surgical Director, Liver Transplant Program

Division of Pediatric General & Thoracic Surgery

Cincinnati Children’s Hospital Medical Center

Liver Transplant Program

Phoenix Children’s Hospital

Elizabeth B. Rand, MD

Medical Director, Liver Transplant Program

Children’s Hospital of Philadelphia

Kathleen M. Loomes, MD

Co-Director, Fred and Suzanne Biesecker Pediatric Liver Center

Children’s Hospital of Philadelphia

Becky Miller, MSN, CRNP

Liver Transplant Coordinator

Children’s Hospital of Philadelphia

James E. Squires MD, MS

Assistant Professor of Pediatrics

Division of Gastroenterology, Hepatology and Nutrition

Children’s Hospital of Pittsburgh

Steven J. Lobritto, MD

Medical Director

Pediatric Center for Liver Disease and Transplantation

NY Presbyterian Hospital - CHNY/Columbia

NYP Morgan Stanley Children’s Hospital

Mercedes Martinez, MD

Medical Director, Intestinal Transplant Program

Center for Liver Disease and Abdominal Organ Transplantation

NY Presbyterian Hospital - CHNY/Columbia

NYP Morgan Stanley Children’s Hospital

Eunice Biney-Amissah

Pediatric Research Coordinator

Center for Liver Disease and Transplantation

Columbia University Medical Center

Daniel H. Leung, M.D., FAASLD

Associate Professor of Pediatrics

Baylor College of Medicine

Interim Director of Hepatology and Liver Transplant Medicine

Texas Children’s Hospital

Julie Economides, BS, RN

Data Services Coordinator

Transplant Services

Texas Children’s Hospital

Melissa Nugent, BSN, RN, CCTC

Clinical Educator

Transplant Services

Texas Children’s Hospital

Elsie Rojas Duarte BSN, RN, CCM

Interim Director, Pediatric Transplant Program

University Transplant Center

UT Health San Antonio

Cecile Aguayo, MBA, BSN, RN

Pediatric Director of Organ Failure & Transplant Services

Primary Children’s Hospital

Linda Book, MD

Director, Liver Disease and Transplant Program

Primary Children’s Hospital

Carlos Esquivel, MD

Chief, Division of Abdominal Transplantation, Stanford University School of Medicine

Associate Director, Institute for Immunity, Transplantation and Infection, Stanford University School of Medicine

Director, Pediatric Liver Transplant Program, Stanford University School of Medicine

Joshua E. Gossett, DNP, MBA, RN, FACHE

Administrative Director

Pediatric Solid Organ Transplant Center

Lucile Packard Children’s Hospital Stanford

Noelle Ebel, MD

Clinical Assistant Professor

Pediatrics – Gastroenterology

Lucile Packard Children’s Hospital Stanford

Suzanne V. McDiarmid

Chief, Division of Pediatric Gastroenterology, Hepatology and Nutrition

UCLA Mattel Children's Hospital

Ajay Kumar Jain, MD

Section Head, Pediatric Nutrition, Medical Director, Pediatric Liver Transplantation

Division of Pediatric Gastroenterology, Hepatology and Nutrition

SSM Cardinal Glennon Children's Medical Center

Saint Louis University

Nanda Kerkar, MD, FAASLD

Director, Pediatric Liver Disease and Liver Transplant Program

Golisano Childrens Hospital

Nemours/A.I. duPont Hospital for Children

Shikha S. Sundaram, MD MSCI, FAASLD

Medical Director

Pediatric Liver Transplant Program

Children's Hospital Colorado

Dev M. Desai, MD, PhD, FACS

Chief, Pediatric Transplantation

Children’s Medical Center, Dallas

George Yanni, MD

Associate Professor of Clinical Pediatrics

Transplant Hepatology

Division of Pediatric Gastroenterology, Hepatology & Nutrition

Children's Hospital Los Angeles

AdventHealth for Children

Jaime Chu, MD

Assistant Professor of Pediatrics

Division of Pediatric Hepatology

Icahn School of Medicine at Mount Sinai

Manuel Rodriguez-Davalos MD FACS

Surgical Director

Pediatric Liver Transplantation

Primary Children’s Hospital