December 12, 2023
The National Kidney Foundation's advocacy efforts in 2023 started with welcoming a new Congress. It ended with the passage of game-changing legislation that will help the nearly 100,000 kidney patients currently on the waitlist. Voices for Kidney Health advocates were there every step of the way. They shared their stories and educated lawmakers on an agenda that will lead to Transplants for All and improved equity in kidney healthcare. As a result, the kidney community is stronger than ever.
More States Step Up for Kidney Patients
Michigan, Nevada, Rhode Island, and Wyoming passed Living Donor Protection Act (LDPA) legislation. Now, 32 states protect living kidney donors from discrimination when seeking life, long-term care, or disability insurance!
Other states also passed laws that will benefit the kidney community, including:
Michigan will also offer more citizens paid leave when they become living organ donors.
Minnesota passed paid family and medical leave that will benefit kidney patients.
Texas will expand its efforts to educate the public about the benefits of living organ donation.
Washington state will allow any vehicle transporting a living organ to employ lights and sirens.
In each state, living donor advocates and those who benefited from the generosity of living donors were critical to pushing those bills across the finish line.
Read more about our state advocacy efforts and how you can get involved.
Congress Passes Game-Changing Transplant Bill
As the summer progressed, momentum built on Capitol Hill behind the Securing the U.S. Organ Procurement and Transplantation Network Act. The transplant system desperately needs reform, and this landmark legislation seeks to do just that by promoting innovation, transparency, and accountability.
In September, NKF CEO Kevin Longino represented the kidney advocate community when he joined President Biden and key legislation champions in the Oval Office to sign the bill into law. This landmark legislation ensures that more lives will be saved and more patients will have the chance to make better-informed care decisions.
Read more about how this new law will benefit the transplant community.
Pushing for More Equitable Access on All Fronts
The same week that the SUS-OPTN Act was signed into law, NKF government relations staff was helping launch our organization-wide KIDNEY EQUITY FOR ALL™ initiative at the Congressional Hispanic Caucus Institute's (CHCI) Leadership Conference and the Congressional Black Caucus Foundation's (CBC) Annual Legislative Conference in Washington, D.C.
At these events, our team:
Offered attendees free Healthy.Io's Mindful Kidney Tests, allowing them to test their kidney function at home.
Helped host an educational session at the CBC ALC entitled "Kidney Equity for All: Saving Others From the Fire through Earlier Detection & Awareness.”
Partnered with the Congressional Black Caucus Spouses' Foundation to host a community health fair and breakfast.
Voices advocates also helped drive our petition calling on the OPTN to take race off the Kidney Donor Risk Index, which currently devalues a black deceased donor's kidney over a white deceased donor's kidney. This petition, based on our policy paper, Advancing Equity in Kidney Health, clearly shows that NKF refuses to accept stark racial and ethnic inequities in kidney care as the status quo.
Amplifying Patient Voices with Policymakers
Other policy outreach offered guidance on a wide range of key issues to the kidney community;
The End-Stage Renal Disease (ESRD) Prospective Payment System (PPS), led by the Centers for Medicare and Medicaid Services (CMS), spotlights the dire need for improved care, most notably for patients from historically marginalized populations.
The United States Preventive Services Task Force (USPSTF) will research the screening, interventions, outcomes, and disparities for over 37 million Americans with CKD.
Pushed for policies that expand access to vital services, more caregiver training, patient engagement quality measures, and Community Health Integration services.
Help us continue driving big wins for kidney patients and everyone who cares for them. Join our efforts by becoming a Voices advocate today.
Help Us Achieve Even More Next Year
Behind all these victories, our advocate community kept up the drumbeat.
Collectively, we:
Delivered more than 25,000 messages supporting pro-kidney health policy to Congress lawmakers and state legislatures.
Held 153 meetings with Members of Congress as part of our 10th annual Kidney Patient Summit, returning to in-person for the first time in four years.
Submitted over 30 comment letters to federal health agencies, spotlighting the kidney patient perspective on various issues. Helped build a bipartisan coalition of 168 Members of
Congress who supported a federal LDPA, which would expand on the protections provided by state bills.
NKF staff and Voices advocates are already looking ahead to 2024, where we plan to build on these successes and continue to impact our community positively.
Our amazing advocates' victories deserve to be shared! Please help us spread the word on Instagram, Twitter, LinkedIn, and Facebook.
