Transplant Families, an organization supporting pediatric recipients of organ transplants (and their families) submitted the following public comment in response to the U.S. Senate Finance Committee in response to their series of hearings entitled A System in Need of Repair: Addressing Organizational Failures of the U.S.’s Organ Procurement and Transplantation Network. This letter was cosigned by allies and supporters in the pediatric space.

We would like to further invite the public to cosign via Change.org. We will submit an amended version to the Finance Committee, referencing this petition, and thus indicating your support.

Please see the full letter below.

Aug 12, 2022

The Honorable Ron Wyden
Chairman
Committee on Finance
United States Senate
219 Dirksen Senate Office Building
Washington, D.C. 20510

The Honorable Mike Crapo
Ranking Member
Committee on Finance
United States Senate
219 Dirksen Senate Office Building
Washington, D.C. 20510

Re: Senate Hearing – "A System in Need of Repair: Addressing Organizational Failures of the U.S.’s Organ Procurement and Transplantation Network"

 

Dear Chairman Wyden and Ranking Member Crapo: 

We are writing to you today as a coalition of community-based organizations with a vested interest in pediatric transplantation.  Each of us has either watched our child slowly succumb to organ failure, not knowing if they would live or die, or we have supported someone who has been through this process.  We, caregivers, have watched our childrens’ transplant teams work extremely hard to list our children on the national organ waiting list, and, thereafter, they have provided around-the-clock care and a shoulder to cry on in our most helpless of hours.  We have celebrated with our transplant teams when algorithm matching is successful, and our child is offered a second chance at life. We are especially thankful when a donor family makes a heartbreaking and selfless choice to allow that second chance at life for our loved ones.  Many of these things were discussed in your hearing on August 3rd, 2022.  We commend the Committee on their commitment to continuous improvement for a system that saves the lives of so many.  

However, we couldn’t help but notice that the most vulnerable recipients were left out of consideration.  We are writing to you to consider pediatric patients in future proceedings regarding the Organ Procurement and Transplantation System (OPTN) and its contractor, United Network for Organ Sharing (UNOS).

We believe the current system needs improvement, as it is not representative of people who live with organ failure: patients and caregivers. Often the voices of one of the most marginalized groups of organ failure are underrepresented throughout the system: children. Time and time again, past policies created around organ procurement, such as multi-organ transplants, have harmed pediatric patients. In this example, multi-organ transplants take priority over those children waiting for kidney transplant[1]. Children need fair access to the national system, and all involved need specialized training to work with donor families who are losing a child and recipient families who receive the gift of life. We all agree the list is too long, and organ discard rates need to decrease, but not at the expense of children who may be passed over in favor of adult transplant centers. 

A few items to consider are:

1. Incorporating the patient and family's voice in the OPTN’s work is critical! There should be appropriate representation on Committees, in the discussion of policy priorities, and in considering patient-centered outcomes and metrics – these advocates need to have adequate training and support from the organization. They should not have to be employed by a hospital, OPO, or the like to be considered.  Sometimes the best advocates that will give an objective point of view do not work within the transplant system.
2. There was important attention in the Committee’s Report and in the hearing to that of minority groups, like African-Americans, which are at risk for limited access to transplant and poorer outcomes.  We applaud the Committee for bringing attention to this and would like to add that races other than white often make up over half of all pediatric transplants, according to the SRTR donation and transplant analytics page[2]. Many of these are Hispanic families with no access to Spanish patient education.
3. Currently, there are just 2,100 children on the U.S. waitlist for solid organ transplant – this is less than 2% of the total waitlist (1 in 100 on the kidney waitlist, 1 in 20 for liver, 1 in 10 for heart, 1 in 50 for lung). But every one of those children is on the organ transplant waitlist because they have a risk of dying without transplant – and every one of them is likely to survive and thrive into adulthood IF they get a transplant.
   1. There was NO mention in the report, accompanying documents, or the hearing itself about children on the transplant waitlist – another vulnerable population that is critical to prioritize and protect.
   2. In terms of the amount of patient years they have lived, children are underrepresented in policy-making but almost always see the full impact of policies, good or bad.
4. A well-coordinated national transplant system is imperative for these children. Because children are small, they have fewer options for suitable donors. Well-organized, efficient, regional, and national sharing of organs is thus critical for children and pediatric transplant centers to obtain the right organ for every child.
5. Ensuring that OPOs have the training and resources needed to approach families of pediatric donors – and to manage pediatric donors and connect them to transplant centers that can utilize them effectively for children – is an important need. There is little known about OPO performance specifically as relates to pediatric donors.
6. In considering OPO strategies for decreasing organ discard rates, it is imperative to ensure that potential offers to marginalized populations – like children – are not skipped over in favor of expedited placement along well-trodden paths from OPOs to adult transplant centers. To save the lives of children on the transplant waitlist, they need to have broad, trustworthy access to offers of organs that are right for them.  This is specified in the “Maximin” principle as spelled out in the Ethical principles of pediatric organ allocation updated November 2014 on the OPTN website.[3]
    

Finally, we would like to address a few line items based on the recommendations outlined in the Staff Memo On Organizational Failures Of The United States Organ Procurement (UNOS Hearing Confidential Memo (FOR RELEASE).pdf)[4]:

• While we encourage competition to improve any system, specifically opening the contract to for-profit entities as the first line item concerns patients and families as this will most certainly drive costs up for organ transplant, pre- and post- care.  As we have seen in other for-profit areas, these costs are always shifted to the consumer (or patient in this case), who already shoulders significant costs when it comes to life-saving transplants.  We hope that the Committee will please take this into consideration.
• The second line item stating that policy can be enacted by several contractors is also concerning.  Having centralized organ allocation (ie. a “clearinghouse function”) is almost necessary in order to keep seamless exchange to and from OPOs and transplant hospitals.  In other countries that have separate organ allocation systems (that would mimic the several contractor's scenario), there aren’t easy or automated ways to share life-saving resources. Our current data allocation system works well.  It is the discards and transport that is one of the most concerning items, along with access to the waitlist. We hope the solution that you are alluding to in item 4 is actually a centralized data store and allocation with potential contractors involved at another point besides decisioning and would like clarification between points 2 and 4.
• All of the other suggestions we strongly support and are willing to give specifics as to why.

Thank you for your compassion, time, and effort during these hearings.  It is clear that the Committee shares a desire for positive change within our organ allocation system.  We write to you in hopes that these changes will always include and consider those it affects the most: the donor and recipient patients and their families.

Sincerely, 

Melissa McQueen
Parent to heart transplant recipient Dylan (14, transplanted 8 months old)
Executive Director / Founder Transplant Families
Member, OPTN/UNOS Board of Directors
Member, OPTN/UNOS IT Advisory Committee/Network Ops & Oversight Committee
Former Member, OPTN Data Advisory Committee
Former Member, OPTN Pediatric Committee
Families in Action Council Co-Chair, Advanced Cardiac Therapies Improving Outcomes Network (ACTION)
PARTNER Project Lead - PCORI project facilitated by Starzl Network and Transplant Families

Jennifer Lau
Parent to liver transplant recipient Nathan (10, transplanted 9 months old)
Board Vice President, Transplant Families
Member, OPTN Pediatric Committee
Co-Founder/President BARE Inc.
Chair, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)
PARTNER Project Lead - PCORI project facilitated by Starzl Network and Transplant Families
PFV Member, Starzl Network

Stacy Hillenburg
Parent to pediatric heart transplant recipient (10 years old, 2 mos old at transplant)
Board Secretary, Transplant Families

Jill L. Brown, MPA
Parent and Living Donor to kidney transplant recipient Kylee (12, transplanted at 3 years old)
Executive Director of NW Kidney Kids
Board Treasurer, Transplant Families 

Riki Graves, MHA
Parent to heart transplant recipient, Juliana (8, transplanted at 17 days old)
Board Member, Transplant Families
Quality Initiatives Committee Member, Pediatric Heart Transplant Society
Families in Action Council Member, Advanced Cardiac Therapies Improving Outcomes Network (ACTION)

Joseph Hillenburg
Parent to pediatric heart transplant recipient (10 years old, 2 mos old at transplant)
Strategy Advisor, Transplant Families
Member, Scientific Committee, Pediatric Heart Transplant Society
Member, Families in Action (FACT), Advanced Cardiac Therapies Improving Outcomes Network (ACTION)
Member, American Society of Transplantation Transplant Community Advisory Committee
Member, Donate Life America Volunteer Committee
Former Member, OPTN/UNOS Board of Directors
Former Member, OPTN/UNOS IT Advisory Committee/Network Ops & Oversight Committee
Former Member, OPTN Patient Affairs Committee
Former Member, OPTN Pediatric Committee

Ansara Piebenga
Parent to kidney/liver transplant recipient, Lauren (16, transplanted at 16 months old)
Board Member, Transplant Families
Member, Improving Renal Outcomes Collaborative (IROC)’s Community Engagement Workgroup
Ambassador and Volunteer, National Kidney Foundation

Sarah Vargas
Parent to pediatric two time liver transplant recipient, Rosie (8, 9 months & 4 years of age)
Board Member, Transplant Families
PFV & Executive Steering Committee, Starzl Network

—-----------------------------------------------------

Erin Babin, LCSW
Parent to liver transplant recipient Elise (10, transplanted at 17 months)
Member, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)

Anna Beeman
Parent to liver transplant recipient, Will (4, 6 months old at transplant)
CEO of Liver Mommas & Families, Inc.

Christopher Beeman
Parent to liver transplant recipient, Will (4, 6 months old at transplant)
Board Member, BARE, Inc. 

Bonnie Bolin, RN, BSN
Mother to heart transplant recipient Raylan (2, transplanted at 3 months old)
Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Committee Member
Hospital Services Coordinator for Southwest Transplant Alliance

Jessica Callear
Parent to liver transplant recipient Hazel (6, transplanted 10 months old)
Member, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)

Hilary Camille
Parent to heart transplant recipient Shiloh (11, heart transplant at 2 years old)
Certified Grief & Trauma Coach
Advocate and Co-Administrator of Pediatric Heart Transplant Caregiver Group, representing nearly 2000 caregivers nationwide

Amanda Morcheles Goldstein
Parent to pediatric kidney transplant recipient (Lily, transplanted in 2016, 11 years old)
Co-Chair of the Improving Renal Outcome Collaborative’s (IROC) Community Engagement Workgroup

Serina Guerrero
Parent to heart transplant recipient Amaya (9, transplanted at 8 months old due)
Advocate and Co-Administrator of Pediatric Heart Transplant Caregiver Group, representing nearly 2000 caregivers nationwide

Jasmine Hollingsworth
Parent to liver transplant recipient, Kai (14, 4 months old at transplant)
Founder/Executive Director of Liver Mommas & Families, Inc.

Amanda Kammes
Parent to current liver waitlist child, William (12)
Board Member BARE, Inc.

Sherrie Logan, BSc, BA
Parent to liver transplant recipient, Ashley (15, 2 years old at transplant)
Co-Founder of Ashley’s Angels (Third party fundraising initiative in support of The Hospital for Sick Children)
Executive Committee Member Starzl Network
Member, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)

Kimberly Matthews
Parent to liver transplant recipient, Isaac (18, transplanted at 5 months)
Member, Patient & Family Engaged Partners of SPLIT ( Society of Pediatric Liver Transplantation)

Stephanie Mullett
Parent to pediatric liver transplant recipient (4 years old, 10 mos old at transplant)
Program Administrator Alagille Syndrome Alliance
CHOC Representative for PFV, Starzl Network

Brittany Munn
Parent to liver transplant recipient Caleb (8, transplanted at 6 months old)
Board Member, BARE Inc.
Member, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)

Jennifer Rodriguez
Parent of pediatric kidney transplant recipient (Emily - 3.5yrs post-transplant)
IROC Community Engagement Workgroup Member

Jordan Sarbaugh
Parent to liver transplant recipient Hudson (5, transplanted 9 months old)
Co-Founder, VP BARE Inc.
Member, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)

Krupa Shah
Parent of liver transplant recipient Jaisal (11, transplanted 15 months old)
Member Parent and Family Voice, Starzl Network

Stephanie Skrede
Parent to liver transplant recipient Sophia (9, transplanted at 9 ½ months old)
Board Member, BARE Inc.

Vanessa Smith
Living Liver Donor
Parent to liver transplant recipient Rylie (15, transplanted at 10 months)
Member, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)

Jennifer White
Parent to liver transplant recipient Joshua (24, transplanted 14 years old)
Co-Chair, Patient & Family Engaged Partners of SPLIT (Society of Pediatric Liver Transplantation)

Tawanna Williams, CPC
Parent to heart transplant recipient Avery Grace (6, 2 years old at transplant)
Diversity, Equity, and Inclusion Consultant
Certified Professional Coach
National Board Member/Medical Advisory Council
The Children’s Heart Foundation
Parent and Advisory Board Member
Additional Ventures 

Cheryl Witty
Parent to pediatric kidney transplant recipient Kimberly (transplanted at 12 years old)
Co-Founder, Children’s Transplant Initiative

Ross Witty
Parent and living kidney donor to daughter Kimberly (transplanted at 12 years old)
President/CEO, Co-Founder, Children’s Transplant Initiative

Leslie Wyers
Parent to TWO pediatric kidney transplant recipients (Logan, transplanted 10 years ago,  and Kylie, transplanted 8 years ago)
Living Donor
Co-Chair of Improving Renal Outcome Collaborative’s (IROC) Community Engagement Workgroup
President NephHope Foundation
Past UNOS Patient Affairs Committee member

Kathleen Yago
Parent to heart transplant recipient (Hana, 7, transplanted at 21-months old)
Member, Families in Action (FACT), Advanced Cardiac Therapies Improving Outcomes Network (ACTION)
Family Advisory Council Member, Stanford Medicine Children's Health at Lucile Packard Children's Hospital 

Susan Zohner
Parent to pediatric heart transplant recipient (10 years old, 4 mos old at transplant)

Deborah Morrissey Pham
Parent to pediatric heart transplant recipient, Madelyn (18, transplanted at 7 weeks old)

Madelyn Pham (18)
Pediatric heart transplant recipient at 7 weeks of age

—------------------------------------------------------

Edward Drake II
Pediatric kidney transplant recipient (Oct 2008)
Founder/ YNOTT? Foundation (Youth Needing Organ & Tissue Transplants)
Inspirational Speaker & Patient Advocate

Diana D. Kendall
Executive Director
Transplants for Children

Rick Lofgren
President and CEO of the Children’s Organ Transplant Association (COTA)
Representing more than 2000 pediatric transplant families across the country since 1986

Carolyn Salvador
Chief Executive Officer, Enduring Hearts

Diann Begley RN,BSN
Program Administrator, Enduring Hearts

Lisa Yue
President & Founder
Children’s Cardiomyopathy Foundation

 —------------------------------------------------------

[1] Organ Procurement and Transplant Network. [Ethical implications of multi organ transplants]. [https://optn.transplant.hrsa.gov/policies-bylaws/public-comment/ethical-implications-of-multi-organ-transplants/ Accessed [August 2022].
[2] Scientific Registry of Transplant Recipients. [Donation and Transplantation Analytics]. [https://www.srtr.org/tools/donation-and-transplantation-analytics/ Accessed [August 2022].
[3] Organ Procurement and Transplant Network. [Ethical principles of pediatric organ allocation]. [ethical-principles-of-pediatric-organ-allocation]. Accessed [August 2022].

 
[4] United States Senate Committee on Finance (August 3, 2022) Staff Memo On Organizational Failures Of The United States Organ Procurement

[https://www.finance.senate.gov/imo/media/doc/UNOS%20Hearing%20Confidential%20Memo%20(FOR%20RELEASE).pdf