An Open Letter to the Community

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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