April 19, 2024
Around 90,000 people are currently on the kidney transplant waitlist, each hoping for a life-changing kidney transplant. Sadly, multiple people on the kidney waitlist die every day, never having gotten their second chance at life.
The National Kidney Foundation (NKF) believes in a future where everyone who needs a kidney gets one–a future where there are Transplants for All.
From policy wins to mentorship programs, here are five ways NKF is working to make this dream a reality.
5 Transplants for All Achievements
1. Passing the Securing the U.S. Organ Procurement and Transplantation Network Act
NKF has steadfastly advocated for a high-performing transplant system that puts patients first. So, when President Biden signed the Securing the U.S. Organ Procurement and Transplantation Act into law, NKF's CEO, Kevin Longino, was invited to stand beside him.
Now the Health Resources and Services Administration (HRSA) can make the following common-sense changes to the U.S. organ procurement and transplantation network (OPTN):
- Updating the OPTN IT infrastructure to improve organ matching, allocation, and communication
- Installing an OPTN board of directors independent from the United Network for Organ Sharing (UNOS) contractor to mitigate conflict of interest and promote excellence in governance
- Prioritizing patient-centricity and transparency by developing a public dashboard of key transplant measurements to help patients choose a transplant center that best suits their needs.
Before this law, one organization had the government's permission to manage the organ procurement and transplantation network. With no competition between companies for this contract, there was little innovation.
As a result, the system became outdated and created life-threatening delays for those needing a kidney transplant. The passing of the U.S. Organ Procurement and Transplantation Act ensures more organizations can compete for the contract and create a patient-centric transplant system.
"This is a fantastic bill that will improve transparency, innovation, and modernization of the transplant system," said NKF's CEO, Kevin Longino. "It will improve accountability and lead to more transplants, which we desperately need."
Learn more about the U.S. Organ Procurement and Transplantation Act.
2. Advocated to remove race from the Kidney Donor Risk Index (KDRI)
The KDRI calculation estimates how long a kidney will last based on the characteristics of a deceased donor.
Currently, the calculation scores kidneys from Black/African American donors less favorably than other races or ethnicities. The result? Kidneys from selfless Black/African American donors are underused.
Race is a societal construct that has no bearing on how well kidneys function. NKF has worked hard to ensure the KDRI reflects this truth to advance equity in deceased kidney donation and transplantation.
"We envision a future where everyone can receive a life-saving kidney transplant regardless of race, ethnicity, zip code, gender identity, sexual orientation, and immigration status," said Morgan Reid, NKF's Director of Transplant Policy and Strategy. "Our latest move to progress equity in transplantation was to remove the African American donor characteristic from the KDRI. OPTN now has a policy to refit the KDRI algorithm without ethnicity."
NKF will continue advocating for race-free KDRI until the policy proposal becomes an official mandate.
Join NKF in the fight for a fairer future for everyone with kidney disease.
3. Expanded patient mentorship programs
Living with kidney disease can feel overwhelming or lonely. That's why we created NKF Peers and launched NKF Peers en español. Through NKF Peers, patients can be matched with a trained mentor who has experience living well with kidney disease.
For Heather, a transplant recipient, NKF Peers helped her gain the confidence she needed to go through with a kidney transplant.
"My sister wanted to donate a kidney to me. I had a lot of trouble wrapping my mind around that. I was anxious and afraid. I wanted to make sure she was okay and ready to do this," said Heather, "My mentor had a similar experience with a familial donor and helped me through it."
Thanks to her mentor's guidance, Heather has her transplant and is thriving. She's just one of the thousands who have grown their confidence to take charge of their kidney health through NKF Peers.
4. Inspired living kidney donors
NKF Donor Connect is similar to NKF Peers but tailored for potential kidney donors. Mentees can ask questions and get answers from trained living donors.
Since launching in 2023, NKF Donor Connect has empowered almost 150 people to become living kidney donors.
"Reaching this milestone is a testament to the dedication of our team and the power of collaboration," said NKF's CEO, Kevin Longio. "We are grateful to our incredible donor peer mentors who selflessly share their experiences to make a positive impact on countless lives."
Learn more about the living kidney donor journey.
5. Educated tens of thousands of people with kidney disease
NKF believes that education is the key to thriving with kidney disease. We launched NKF's Kidney Learning Center and Centro de Enseñanza del Riñón to ensure everyone can access the education they need to thrive.
Since launching, our free, self-paced learning courses have helped thousands navigate their kidney disease journey and better manage their health.
To help more people access kidney transplants, NKF also launched two live versions of the Kidney Learning Center transplant courses in Spanish at NKF's local offices. These in-person events allow patients to connect with their local transplant teams, hear from patients and donors, and ask questions about the process. Empowered with knowledge, people who attend our NKF events are ready to take the next step in their transplant journey.
