Advocacy

SPLIT’s Response to the OPTN Board Nominating Committee (February 2025)

The Society of Pediatric Liver Transplantation has written the following statement in response to the OPTN Board Nominating Committee and new Board.

Dear Administrator Johnson:

The Society of Pediatric Liver Transplantation (SPLIT) is the largest consortium of pediatric liver transplant centers and experts in the US and in close collaboration with our Patient, Family, and Engaged Partners (PFEP) have the largest longitudinal database (29 years) of pediatric liver transplant patient outcomes worldwide. This experience has supported meaningful evidence-based innovation initiatives and national policy formation that has tangibly improved equitable pediatric liver transplant access, ongoing research to improve transplant outcomes, living donation resources, workforce diversity, and sustainable health for organ donation and transplant institutions.

The Society of Pediatric Liver Transplantation supports the HRSA Modernization Initiative to improve the organ donation and transplantation system to more efficiently and equitably serve the national community that accesses this specialized healthcare.

As a professional organization of pediatric liver transplant experts, patients, and parents that represent the pediatric liver transplant community, we are writing at this time to partner with HRSA and request:

Additional transparency and dialogue regarding the criteria for selecting the new OPTN Board Nominating Committee and the first installed Board.
That minimum 10% of the new Board have pediatric transplant emphasis for adequate representation for pediatric patient interests and advocacy.
Metrics for determining the new OPTN Board effectiveness.
A letter response/acknowledgement addressing these specific requests.

We appreciate the opportunity to participate in OPTN Modernization listening sessions and stakeholder meetings but have continued concerns that the transition process moving forward lacks transparency and consistent messaging. Most recently, we are concerned with the Board Nominating Committee selection process and the apparent exclusion of pediatric transplant professionals in determining the makeup of the Board. These biases risk not having inclusive and equitable representation of a highly vulnerable pediatric population of end stage organ failure patients on the Board. Three Board members with pediatric transplant focus would provide adequate and authentic advocacy for children.

Additionally, the circulated rules for Nominating Committee participation further exclude individuals from the pediatric transplant community that have volunteered to serve on the OPTN Board during the last 10 years when the most significant improvements in pediatric patient outcomes have occurred. While we acknowledge that this “fresh start” approach may temporarily circumvent the perception of entrenched traditional thinking, the immediate impact will be a significant loss of content expertise and quality improvement and patient safety momentum.

We recognize there are significant improvements needed in our organ transplant system, and to best assist HRSA in meeting its objectives and obligations to the general public we are requesting to be part of every discussion regarding the modernization initiative. Pediatric patients cannot be an afterthought- if we build a new system only addressing adult patient concerns, we risk further jeopardizing the lives of children awaiting transplant. We respectfully request a reply to this letter and the opportunity to partner with HRSA in the modernization initiative. The patients and communities that we mutually serve deserve our best collaborative effort.

Sincerely,

Manuel Rodriguez-Davalos
SPLIT President
On behalf of the SPLIT Council

New PELD-Cr Score and Status 1A/1B Criteria updates - UNOS Webinar

Updates to the PELD score calculation, and Status 1A and 1B criteria for pediatric liver transplant candidates will take effect on July 13th! Learn more about the changes, and how they will impact children on the liver transplant waitlist, in this UNOS webinar. Thank you to all the SPLIT community members who helped advocate for these important changes – they are important improvements to the way that children are prioritized for liver transplant!

CLICK HERE TO VIEW THE RECORDINGS

Living Donor Protection Act

The Society of Pediatric Liver Transplantation (SPLIT) urges your support for the Living Donor Protection Act of 2021 to save children’s lives and protect living donor organ heroes.

Children are dying as they remain on liver transplant lists, waiting for a life-saving organ donation. About 30% of children wait more than 2 years for liver transplant. Approximately 10% of children less than 2 years old, and 5% of children over 2 years old, die while waiting for their liver transplant. We believe that no child should die on the transplant waiting list. We are failing these children if we do not fully protect their access to living donation.

Solution

Living organ donation for pediatric liver transplant is a safe and effective way to save the lives of children with end-stage liver disease. Children who have living donor transplants are more likely to survive after liver transplant and are less likely to need another liver transplant in the future. An adult can safely donate a piece of their liver to a child, but they need time to recover after this surgery. But only 12% of pediatric liver transplants in the U.S. are utilizing living donors.

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:

Prohibit the denial of coverage or an increase in insurance premiums for life, disability or long-term care for living donors.
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.
Update materials for public education on living organ donation and the protections related to insurance from the Living Donor Protection Act.
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.

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.

Statement on OPTN Optimization Initiative, May 2023

The Society of Pediatric Liver Transplantation has written the following statement as an initial community response to the Health Resources and Services Administration’s OPTN Modernization Initiative. We look forward to engaging with HRSA, the OPTN, and the transplant community on initiatives to modernize and improve transplant in the U.S. – particularly for children awaiting and after life-saving liver transplant.

The Society of Pediatric Liver Transplantation (SPLIT), as the largest consortium of pediatric liver transplant centers in the United States and in close collaboration with our Patient, Family, and Engaged Partners (PFEP), supports meaningful innovation initiatives that tangibly improve equitable access to pediatric liver transplant, ongoing research to improve waitlist and post-transplant outcomes, provisions for living donation, diversity of the workforce, and sustainable health for organ donation and transplant institutions.

To ensure that our transplant system successfully serves children, a persistently vulnerable transplant population, we need the following:

A modernization effort that recognizes and considers pediatric-specific concerns at every stage, in parallel to concerns that primarily impact adult candidates
Pediatric provider and patient representation in every step of the planning process
A well-organized national system that ensures nationwide sharing of pediatric organs prioritized for pediatric recipients, acknowledging that these children are vulnerable with more limited donor options

It is imperative that our society and government take all available action to urgently prioritize optimal health care delivery to children, especially in focused initiatives that explore improvements to the organ donation and transplant system. SPLIT, as a society of multidisciplinary experts on pediatric transplant, is poised and compelled to serve as a resource for the proposed modernization agenda.

We recognize there are significant improvements needed in our organ transplant system. In 2019, the pediatric waitlist mortality rate for liver candidates less than 1 year of age exceeded that of adults of all ages, with a peak rate of 12.1 deaths per 100 waitlist years (SRTR Annual Report, Liver 2018, SRTR Annual Report, Liver 2019). However, we also need to acknowledge the significant advances and improvements that have been made. In 2020, after implementation of the new acuity circle allocation policy, deaths on the pediatric liver waitlist reached its lowest since 2011, at 4.9 deaths per 100 waitlist years. For pediatric liver recipients, we have achieved greater than 90% patient survival rate at 5 years post-transplant (SRTR Annual Report 2020) – but this means that transplant was available too late, or that complications were too overwhelming, to save 1 in 10 of these children. UNOS allows for data-driven tracking of every U.S. transplant, which is more comprehensive than tracking for any other medical condition. Access to this data has allowed for research aimed at improving outcomes in pediatric transplant patients.

While much recent press has focused on UNOS, improvements are also needed in individual transplant programs to optimize outcomes for children. All patients, regardless of geographical location or resources, need to have equal access to transplant. This includes access to all graft types – with the surgical expertise and team willingness to include split and living donor transplant.

A nationally organized system is critical to ensuring equitable access to organs for children and other difficult to match candidates. It is important to ensure that this system provides oversight for all transplant centers and organ procurement organizations to optimize organ distribution and lives saved. This is not about creating a monopoly or having one entity run every aspect of organ transplant but creating shared accountability with adequate oversight.

We implore new entities interested in managing the OPTN to engage with pediatric groups such as SPLIT. The United Network for Organ Sharing (UNOS) has made substantial efforts to engage and involve the pediatric community since its inception, and particularly in the last half-decade. There is significant risk of losing ground towards the goal of eliminating pediatric waitlist mortality in this modernization effort. The Health Resources and Services Administration (HRSA) does not address pediatric patients at all in the modernization announcement nor in the aims of the initiative.

We strongly encourage including pediatric-focused advocates in any modernization initiatives proposed by the HRSA, and SPLIT welcomes the opportunity to participate in all phases of this proposal.

30 May 2023
Contact: split@tts.org

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+1-514-874-1717 x210
katie.tait@tts.org

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Society of Pediatric Liver Transplantation
c/o The Transplantation Society
740 Notre-Dame Ouest
Suite 1245
Montréal, QC, H3C 3X6
Canada

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