Advancing Kidney Health Equity: NKF's 2024 Advocacy Wins

We know that specific groups of kidney patients are treated unfairly by the healthcare system, causing harmful, even life-threatening, health consequences. The National Kidney Foundation is doing something about it. Getting the government to adopt policies and pass legislation can take a long time, and advocacy can sometimes feel like ice skating uphill. Nonetheless, we are 100% committed to doing all we can to make sure each kidney patient can access the care they need to live the fullness of their lives.

While there is still much work to do, we are excited to share that we have had some great successes in 2024 in advancing health equity in kidney health this year. And a win for us means a win for the kidney patient community. 

Check out the different ways we advocated for a more equitable kidney health system and learn how you can take action.

KDRI is a clinical calculation that evaluates the risk of kidney failure from deceased organ donors that inaccurately “scored” kidneys from African American donors as less viable for transplant because of an African American modifier. 

Through steadfast advocacy and persistent communication with the Organ Procurement and Transplantation Network (OPTN) and the Health Resources and Services Administration (HRSA), we fought for a race-neutral KDRI. 

The OPTN has now embraced this change by removing the outdated ethnicity requirement from the KDRI calculation. We could not have achieved this victory without nearly 2,000 patient advocates signing a petition to express their desire for this change. This transformative step promotes health equity in organ donation, paving the way for a more inclusive future in organ donation and transplantation and an anticipated increase in kidney transplantation. 

Learn more about NKF's efforts to remove race from the KDRI formula.

At NKF, we believe every person who needs a kidney should be able to access the national kidney transplant waitlist. While dialysis is an essential treatment for kidney failure, we recognize that kidney transplantation can significantly enhance the quality of life for patients. 

That's why we passionately advocated for the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) to eliminate burdensome clinical research requirements that hinder organ donation and transplantation between donors and recipients living with HIV. 

We were thrilled when HHS announced its decision to remove these guidelines. View the press release here. This decision opens the door to a more accessible path for kidney transplantation. 

Learn more about kidney transplants and HIV.

Home dialysis offers flexibility to align with patients' lifestyles, enhances quality of life, reduces food and fluid restrictions, and can increase the chances of successful transplantation. Yet, Black and Hispanic kidney patients face low rates of home dialysis due to a lack of awareness and poor communication from physicians regarding this treatment for kidney failure. 

We were excited to introduce the Improving Home Dialysis Act, a transformative initiative designed to boost education about home dialysis and expand access by growing the workforce of home dialysis providers. We hope to close disparities in home dialysis access so that everyone can make informed decisions about treatments that work best for them.

Ask your Representative to help more patients access home dialysis.

Did you know that a person’s race, where they live, and how much money they earn can hinder their referral for a kidney transplant? 

NKF has engaged with Congress, the Centers for Medicare and Medicaid Services (CMS), and HRSA to proudly advocate for comprehensive data and targeted interventions to close disparity gaps in transplant access. 

Everyone who needs a kidney should have a chance to be evaluated for a life-saving kidney transplant. Eliminating disparities will give a fair opportunity for all kidney patients, regardless of their background, to explore transplantation as a treatment for kidney failure.

Learn more about NKF's Transplants For All mission.

Here's how you can help NKF push for fair kidney healthcare.

1. Become An Active Advocate with NKF

Use your voice to help advocate for a healthcare system that prioritizes kidney health equity. 

Join Voices for Kidney Health today.

2. Sign Up For Action Alerts

Look out for emailed alerts from NKF asking advocates to take special action to advocate for legislation and policy that will improve the quality of life for kidney patients.

3. Learn More

Let our government relations team guide you on meeting with your members of Congress to raise awareness of kidney disease and encourage them to support efforts to improve kidney health in the United States.

Find advocacy resources. 

4. Don't Give Up

Advocacy is not always easy, but it is necessary to advance kidney health policies and legislation that work for everyone. Healthcare is a right, not a privilege. All that we achieved this year was on our behalf and in partnership with our kidney patient advocate community, and we are so grateful. 

Take action.

We look forward to working together in 2025 to accomplish more victories!