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