Advocating for Individuals Living With Kidney Disease: At the Bedside and in the Halls of Congress

Sylvia E. Rosas @sylviaerosas

Sylvia E. Rosas, MD, MSCE is a nephrologist and epidemiologist at the Joslin Diabetes Center and an Associate Professor of Medicine at Harvard Medical School. Dr. Rosas has evaluated health disparities in individuals with CKD particularly in those of Hispanic/Latino background.  She is the President of the National Kidney Foundation and chairs the NKF Health Equity Advisory Committee.


March is National Kidney Month, with the purpose of raising awareness about kidney health. At the National Kidney Foundation (NKF), we kicked it off with our 10th Kidney Patient Summit in Washington, DC. About 125 advocates from 37 States, the District of Columbia, and, for the first time, Puerto Rico visited with our legislators and their staff on Capitol Hill to urge support for:

a) Living Donor Protection Act(LDPA), which would protect kidney living donors from discrimination in insurance coverage, higher health insurance premiums, and job loss;

b) the Improving Access to Home Dialysis Act, which would expand access to home dialysis by providing trained, professional staff assistance to patients in their home; and

c) increased investment in priority kidney health programs such as the Chronic Kidney Disease program at the Centers for Disease Control and Prevention (CDC) and kidney related research at the National Institute of Diabetes, Digestive, and Kidney Diseases (NIDDK).

NKF also continues to support efforts to achieve kidney health equity in transplantation. The Organ Procurement and Transplantation Network (OPTN) policy “Modify Waiting Time for Candidates Affected by Race-Inclusive eGFR Calculations” took effect on January 5, 2023. Using a restorative justice framework, the goal over the next year is to improve transplant equity by backdating the waiting times of Black kidney transplant candidates who were affected by the race-based estimated glomerular filtration rate (eGFR) calculation. Because race is a social construct, it is also imperative to remove race from the Kidney Donor Risk Index (KDRI). We commend the OPTN and the OPTN Minority Affairs Committee for prioritizing this effort.

Earlier this year, NKF responded to the United States Preventive Services (USPSTF) draft research plan to assess screening, interventions, outcomes, and disparities in CKD. We recommended a systematic review that allows for stratification of screening, focused where the evidence is strongest—people with diabetes and/or hypertension. Preservation of kidney function is the goal, and can only be achieved if we are able to identify individuals with kidney disease early so that they can benefit from treatment options. When detected early, targeted therapies can significantly improve patient outcomes by attenuating the progression of CKD to kidney failure, and decreasing the risk of cardiovascular disease and death.

NKF also provided recommendations to the Centers for Medicare and Medicaid Services (CMS) to improve the End-Stage Renal Disease Medical Evidence Report Medicare Entitlement and/or Patient Registration (referred to as the CMS-2728 form). While a seemingly minor administrative change, by collecting better information we can identify barriers to transplantation or home dialysis therapies such as housing insecurity, immigration status, or language barriers. By taking a data-driven approach, we can focus resources on the areas where gaps are most significant and where policy can have the biggest impact.

During this month, I invite all of you to participate and to raise awareness of kidney health. Wear your kidney socks, but also take action to promote kidney health. Here are some suggestions:

  1. Participate in or hold a Nephmadness event. NephMadness is a competition between a selection of the hottest topics in nephrology. For 2023, there are 8 main nephrology regions with teams competing against each other.
  2. Become a voice for kidney health and encourage your patients to become advocates themselves.
  3. Become an organ donor.
  4. Highlight your work to raise awareness and eliminate kidney disease on social media. Use hashtag #mykidneyvoice so we can amplify your work.
  5. Ensure your clinical lab reports race-free eGFR using the CKD-EPI creatinine refit equation.
  6. Participate in NKF regional or national events to celebrate Kidney Month.
  7. Become an NKF volunteer.
  8. Donate to your favorite kidney foundation.

At the NKF, every day is kidney day.  Happy Kidney Month to all of you! See you April 10-15 in Austin, Tx for our Spring Clinical Meeting.

– Post prepared by Sylvia E. Rosas.

AJKD March 2023 cover celebrating World Kidney Day

Leave a Reply

%d bloggers like this: