Keeping Up the Drumbeat for Patient-Centric Kidney Policy Changes

October 11, 2023, 8:57am EDT

Person hooked up to dialysis machine in center

Recent National Kidney Foundation policy statements and comment letters have continued our organizational focus on the drive toward improved kidney health equity, transparency in kidney care, and adjusting regulations to remove barriers to living organ donation wherever possible. Here's what we've done.

Published Kidney Equity Policy Paper

NKF’s first-ever health equity paper is a key component of our recently launched KIDNEY EQUITY FOR ALLTM initiative. It states clearly that as an organization we refuse to accept current racial and ethnic inequities “as the status quo and are taking action to support policy changes that dismantle injustices and close gaps in kidney healthcare.”

We are dedicated to achieving a kidney health landscape that is both fair and just and improves outcomes and quality of life for patients.

We will continue to advocate for:

  • Enhanced Chronic Kidney Disease awareness, diagnosis, and management in underserved and marginalized communities.
  • Improved kidney failure outcomes for underserved populations.
  • Elimination of racial and ethnic disparities in access to transplantation.
  • Change that will make our health system more equitable and resilient.

Read the "Advancing Kidney Equity" policy paper.

Fighting for Race-Free Clinical Algorithms 

Tangible steps that NKF is calling on key decision makers to take to achieve these urgent goals include removing race for kidney disease assessment algorithms wherever possible, including in the estimation of glomerular filtration rate (eGFR) and the Kidney Donor Risk Index (KDRI). Race-free CKD testing and diagnostics are the only equitable way forward.

Increasing screenings in underserved communities (and providing the funds to do so) is another key step that Congress and regulatory agencies can take together to foster improved kidney equity, while also bolstering research funds and recommending CKD screenings for the patients that need them most. Continued efforts to make health insurance affordable, accessible, adequate, and understandable for all patients is another key step to ensuring every member of the kidney community gets the care that they deserve.

NKF reinforced these points in a recent letter to House Ways and Means Committee Chairman Jason Smith after the committee issued a Request for Information on how to improve access to health care in rural and underserved areas. This letter highlighted the need to correct inadequate financing of providers and dialysis facilities, to optimize care by aligning sites of service for patients; and to expand telehealth policies first established during the COVID-19 public health emergency, among other priorities.

Sign our petition calling on the OPTN to remove race from the KDRI immediately.

Advocating for an Improved OPTN

Multiple letters recently submitted to the Organ Procurement and Transplant Network echoed these points and made other critical recommendations to foster improved kidney equity nationwide.

These include:

  • Reporting transportation errors that lead to organ non-utilization and prioritizing solutions to maximize every opportunity for organ donation and transplantation, including transparent reporting throughout the transplant process.
  • Removing administrative barriers that could potentially delay highly sensitized patients from receiving a kidney transplant.
  • Optimizing the use of organ filters to make organ sharing more efficient while leveraging data collection to improve transplant outcomes.
  • Studying the outcomes of long-term living donors and prioritizing their voices in an effort to foster long-term living donor engagement.

We thank every patient advocate who answered our call to share their perspective to help guide these statements and policy recommendations. Without their lived experience, we cannot work together to reach our shared goal of optimal kidney health for every patient.

We need your voice to keep making a difference! Become a Voices for Kidney Health advocate.

Keep Up with Our Latest Policy Activities 

Visit and bookmark our recently refreshed Regulatory Advocacy home page to learn how the staff amplifies the patient voice to drive meaningful policy change.

Related content