Blog post

AKF's annual Kidney Action Summit returns to Capitol Hill in-person

On May 17, AKF hosted its annual Kidney Action Summit, connecting Ambassadors and their elected officials to discuss important legislation for the kidney community.
Leigh-Ann Williams and Troy Carter at Kidney Action Summit

During our annual Kidney Action Summit, the American Kidney Fund (AKF) sets up meetings between its Ambassadors and their lawmakers to advocate for legislation that will improve the lives of those living with kidney disease. On May 17, we hosted our first in-person summit since 2019, returning to Capitol Hill with 30 AKF Ambassadors from 17 states meeting with their senators and representatives' offices in 66 meetings, including 10 meetings with members of Congress in attendance.

Our AKF Ambassadors are people with kidney disease, living donors, caregivers and others who have been touched by kidney disease. For their meetings, they were partnered with AKF staff members, who provided background on AKF and our programs and services. Ambassadors then shared their personal experiences with kidney disease to help their elected officials better understand the impact of kidney disease on people's lives. Finally, our team urged congressional offices to co-sponsor the Living Donor Protection Act of 2023 (H.R. 2923/S. 1384) and support increased federal funding for kidney research.

The Living Donor Protection Act of 2023 (H.R. 2923/S. 1384)

The Living Donor Protection Act of 2023 is bipartisan, bicameral (meaning it has been introduced in both the Senate and House of Representatives) federal legislation that provides critical protections to living organ donors. This bill would codify into law a 2018 Department of Labor opinion that living donors have Family Medical Leave Act (FMLA) protections to take time off from work to donate their kidney and recover from surgery, without risking the loss of their job. This bill would also prohibit life, disability and long-term care insurers from discriminating against living organ donors by denying or limiting their coverage or charging them higher premiums solely due to their status as an organ donor.

Living donor protections currently vary from state to state, so this federal legislation would create a baseline of protections across the country if it were to become law. This legislation has been introduced in previous years and we are hopeful that this is the year it will be signed into law. If enacted, it would result in all 50 states having a grade of C or better on AKF's State of the States: Living Donor Protection Report Card.

Want to make a difference? Take two minutes to contact your elected officials through our website and ask them to cosponsor the Living Donor Protection Act of 2023.

Elizabeth Kay and Ron Johnson at Kidney Action Summit

Increased funding for kidney research

Kidney disease is the fastest-growing noncontagious disease in the country and the ninth leading cause of death in the United States.

There are 37 million Americans living with chronic kidney disease (CKD), and there are millions more who are at risk of developing CKD.

Kidney failure is treated the same way it was treated in 1972. There are only two options: dialysis and transplant. There have been no major breakthroughs in treatment in over 50 years. More research funding would mean more innovation. Between 2017 and 2021, federal funding for kidney research at the National Institutes of Health (NIH) increased at half the rate of NIH funding increases overall.

The kidney community has banded together to request $52.6 billion for the NIH for fiscal year (FY) 2024. It is a $3.465 billion increase over the comparable FY 2023 funding level, which will allow the NIH's base budget to keep pace with the biomedical research and development price index (BRDPI). We are also advocating for at least $168 million of the NIH increase to be allotted to the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK).

Additionally, we are requesting $25 million for KidneyX for FY 2024. The $25 million will match funds provided through private sources.

Want to make a difference? Take two minutes to contact your elected officials through our website and ask them to support increased funding for kidney disease.

Joe Maalouf and Cory Mills at Kidney Action Summit

We were delighted to join our Ambassadors in person again this year and are grateful for their efforts to help us advocate for policies that will improve the lives of those living with kidney disease.

Interested in helping fight for positive change for the kidney community? There are a number of ways you can get involved. Our Mobile Advocacy Network is a quick and easy way to stay up to date about advocacy opportunities in your state and at the federal level so you can take action on important issues. Through this tool, you can send emails and engage with your lawmakers on Twitter. Sign-up for the Mobile Advocacy Network here, or by texting "KIDNEY" to 52886.

If you have friends and family who are interested in becoming AKF Ambassadors, please encourage them to sign up.


Katy Gross

Katy Gross is the associate director of government affairs at the American Kidney Fund.