AKF advocacy wins in 2023

Thanks to the persistent advocacy of our wonderful network of nearly 28,000 Ambassadors and our Government Affairs team, the American Kidney Fund (AKF) successfully advocated for policies that help improve the lives of those with kidney disease and living organ donors throughout 2023.

Below are just some of the notable accomplishments we achieved last year:

Meetings with elected officials

We had more than 530 meetings with congressional and state elected officials' offices, including 90 virtual in-district meetings with Ambassadors and their local congressional offices. In these meetings, we built important connections with staff and informed them of the needs of the kidney community.

Written support from AKF and our Ambassadors

AKF Ambassadors sent 25,760 action alerts to state and federal legislators. The AKF Government Affairs team sent 15 comment letters to federal agencies on several issues important to the kidney community, including kidney disease screening, health equity and the End-Stage Renal Disease (ESRD) Prospective Payment System (PPS).

AKF advocacy events

On April 20, AKF hosted its first Patient Access Initiative (PAI) Summit in Washington, D.C., bringing together stakeholders to discuss barriers to affordable and innovative health care that many people with kidney disease face.  Summit attendees discussed possible solutions to ensure equitable access to quality health care that would help address the crisis in kidney disease. Developed as part of the PAI, we also created a whitepaper entitled, "A Call for Early Diagnosis and Treatment of Chronic Kidney Disease" that summarizes the discussion and calls to action arising from AKF's inaugural PAI Summit.

We also hosted two advocacy days on Capitol Hill. On May 16, we brought 30 AKF Ambassadors from 17 states to our annual Kidney Action Summit.They met with their senators and representatives' offices in 66 meetings, including 10 meetings with members of Congress in attendance.

In September, we convened our first Rare Kidney Disease Advocacy Day on Capitol Hill, connecting AKF Ambassadors and patient advocates from the IgAN Foundation, health care professionals and members of with lawmakers on Capitol Hill. Representing seven states, nine advocates (all of whom have a rare kidney disease) had 23 meetings with their senators' and representatives' offices, including two meetings with members of Congress in attendance. 

In addition, AKF staff and members of the UCKD Public Policy working group met with 11 key House and Senate offices and asked them to support the Access to Genetic Counselor Services Act of 2023 (H.R. 3876/S. 2323).

These efforts led to increased support and cosponsors for many of AKF's priority federal bills:

• The New Era of Preventing End-Stage Kidney Disease Act of 2023 (H.R. 6790) aims to improve the understanding and timely and accurate diagnosis of rare kidney diseases.
• The Living Donor Protection Act (S.1384 / H.R. 2923) would ensure living organ donors are protected from insurance discrimination and can take time off from work after organ donation surgery. In 2023, the bill currently has 35 cosponsors in the Senate (S.1384) and 155 cosponsors in the House (H.R. 2923), many the result of AKF efforts. 
• The Chronic Kidney Disease Improvement in Research and Treatment Act of 2023 (H.R. 5027) aims to improve the lives of those with kidney disease. The legislation would increase awareness of kidney disease and expand preventive services. 

Another notable federal policy update in 2023 was the passage of the Securing the Organ Procurement and Transplantation Network Act (H.R. 2566/S.1688), which was signed into law on Sept. 22, 2023. This legislation will help address some of the shortcomings of the current organ donation and transplantation system by allowing HRSA (Health Resources and Services Administration) to change how they contract for the OPTN (Organ Procurement and Transplantation Network). The law allows for increased competition for the management of the OPTN and its critical functions such as logistics and information technology. This will help modernize the OPTN so that it better serves people who need an organ transplant, especially those living with kidney disease.

Advocacy accomplishments in state legislatures

The 2023 state legislative sessions also produced many positive changes for living organ donors and people living with kidney disease. AKF was involved in passing 21 bills and introducing 13 state-level bills, among them passing comprehensive Medigap reform in Kentucky and Virginia, Living Donor Protection Act bills in Nevada, Wyoming, Michigan, and Rhode Island and Biomarker coverage for kidney disease patients in 12 states.

AKF staff and AKF Ambassador efforts at the state level included 277 meetings with state lawmakers and their staff, and 26 state legislative hearings in which AKF staff or AKF Ambassadors provided testimony. 

Get Involved in 2024

Interested in helping fight for positive change for the kidney community? There are several 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 on the federal level so you can act on critical 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. If you are already an AKF Ambassador and are interested in participating in this year's Kidney Action Summit, be sure to apply before the deadline on Feb. 22.

Thank you to all the AKF Ambassadors who worked with us in 2023 to advocate for the kidney community and helped us achieve these accomplishments. We look forward to continuing our advocacy efforts with you this year!