Missouri Changing Lives Through Transplant Leadership Summit

Table of Contents

Introduction

In 2022, the NKF with the support and partnership of the Missouri Kidney Program and the Missouri Department of Health convened leaders to develop a statewide roadmap and recommendations to increase kidney testing and identification in the primary care setting. The Show Me CKDintercept initiative set the groundwork for a national, multi state Collective Impact strategy to address disparities in CKD screening in communities disproportionately burdened by the disease. With this foundation in Missouri, and the framework used in upstream CKD, NKF and partners proposed using the same framework to address the challenges of equitable access to kidney transplant with the goal of improving the lives of over 14,000 Missourians waiting for a kidney.

Background:

Transplant is the best treatment we have for kidney failure. Through NKF’s work upstream to increase diagnosis and delay progression of kidney disease, our vision is to ultimately reduce the need for kidney transplant – but in the meantime, again, we know that transplant is the best option we have for those who do experience kidney failure. It offers better health outcomes and quality of life than dialysis, but very few people receive one.

  • Over 14 people die on the waitlist every day, and over 9,000 kidneys went unused last year US.
  • To illustrate the gap and the opportunity we have, in 2023, over 800,000 people were living with ESKD.
  • There are over 90,000 people on the waitlist for a kidney
  • But tragically, even in another record-breaking year for transplant in the U.S., fewer than 28,000 people received a kidney transplant in 2024. As you can see on the right, there is a huge gap between the people who could benefit from a transplant and the number that receive one.

A major part of the Changing Lives through Transplant initiative was a data strategy to collect voluntary institution-level data. These data points helped craft an informative picture of transplant and donation in Missouri to better identify gaps and barriers, identify disparities to promote equity-enhancing interventions, establish baseline insights to mark our progress over time, and strengthen our collaboration by aligning ourselves around shared data.

Missouri Roadmap - Collective Impact Model

We are excited to share the culmination of the more than 18 months of work. Foundational to this process was the use of the Collective Impact Model which is an evidence-based framework that brings together cross-sector collaborators to drive social change. 

Collective Impact has demonstrated success in driving change across a variety of fields, education youth development, environmental impact, and health care. 

The key characteristics of Collective Impact are:

  • A common agenda
  • Shared measurement
  • Mutually reinforcing activities
  • Continuous communication and
  • Backbone support – NKF will provide the guiding backbone support, to keep the strategy moving, but this is not an NKF project alone, this is for everyone in Missouri to contribute to…. We hope you’ll hear a strategy later on in our discussion that your organization or you as an individual can contribute to.

We started with the data to identify gaps in transplant access across the state. Then we identified stakeholders through a systematic process that included organizations involved in transplant and donation, including transplant centers, organ procurement organizations, dialysis providers, nephrology practices, payors, the health department, and community-based organizations.

In late winter/spring of this year we hosted Learning and Action Work Groups to discuss barriers, solutions, and recommendations on specified topics related to transplant access. 

After 16 hours of facilitated discussion, we consolidated the recommendations from each workgroup into a roadmap. It is important to keep in mind that while this may seem like a daunting challenge, history has shown us that even a small group of committed people working together to address barriers and identify solutions can drive change. 

The Changing Lives through Transplant Leadership Summit

On June 23, 2025, NKF hosted the Missouri Changing Lives Through Transplant (CLTx) Stakeholders Convening to present the recommendations and engage stakeholders in joining the Collective Impact Approach. A total of 129 individuals registered, and 77 attendees participated in this virtual convening. Of the 11 recommendations presented at the event, 21 individuals completed commitments to advance one or more recommendations of the roadmap at varying levels of support.

Commitment Form Link

Downloadable Slides & Links

Contact Us

We sincerely appreciate your thoughtfulness, insights and ideas over the last 18 months. Feel free to share the information in this email with your colleagues and contacts across the state.

For more information on how you can get involved in this Collective Impact initiative, please contact:

Our Funders

Work Group Participants

For more information on who participated in this project, please view our Work Group Participants below.