New Era of Preventing End-Stage Kidney Disease Act H.R. 6790

About the Bill

The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”), introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), has the potential to bring about significant positive changes in how we understand, treat, and study rare kidney diseases (RKD). This legislation aims to help people with RKD by finding and treating diseases earlier, enhancing education of doctors and patients, and conducting more research. This could lessen the impact of RKD on people’s lives and reduce costs for patients and the health care system in the long run.

• Reduce Kidney Failure. The New Era Act will require the U.S. Department of Health & Human Services (HHS) to evaluate treatment methods that would delay or eliminate the need for dialysis and transplant and provide legislative recommendations to Congress to support its findings. The Act would also require a report to Congress on how to slow RKD progression, including strategies to increase the use of routine urinalysis and genetic testing.
• Close the Gap for Underserved Communities. The New Era Act  directs HHS to make recommendations that would improve care in communities that have disproportionate rates of RKD. HHS will study a range of issues relating to early intervention, testing, and treatment, including access to kidney doctors, patient trust of their health care provider, and the utility, impact, and barriers associated with genetic testing, in particular for the APOL1 gene mutations (found only in individuals of African descent and associated with greatly increased rates of non-diabetic kidney disease).
• Advance Research and Standard of Care. The New Era Act will create regional Centers of Excellence on Rare Kidney Disease Research at the National Institutes of Health (NIH) which will support research, public awareness, and resources which could lead to innovative, less invasive treatments and possibly a cure. These centers would be able to share expertise that could improve uniform standards of care, reducing the likelihood for poor or variable health outcomes among RKD patients.
• Enhance Provider Education. The New Era Act establishes nephrology fellowships and provides continuing education and primary care training on RKD diagnoses and treatment. This training will enhance physician knowledge and increase the number of experts available to patients.
• Empower Patients & Communities. The New Era Act will support public information and patient education campaigns, promoting informed communities and empowering patients to take charge of their health care journey.

Led by Community Action

Revolutionizing rare kidney disease treatment has been a longstanding priority for NephCure. In 2020, NephCure and its partner organizations facilitated the first-ever Rare Kidney Disease Roundtable and resulting white paper entitled “We Deserve Better: Revolutionizing Rare Kidney Disease,” which outlined urgent needs in the rare kidney disease space, specifically for patients and their families. Based on these community insights, NephCure worked closely with champions in the House of Representatives on the introduction of the New Era of Preventing End-Stage Kidney Disease Act in the 117th Congress, garnering bipartisan support.

NephCure hosted its Rare Kidney Disease (RKD) Week in July 2023 to raise awareness and advocate for legislative change to improve the lives of RKD patients and their families. A record 61 advocates from 20 states flew to Washington, D.C., for the annual Rare Kidneys on the Hill Day, making it NephCure’s largest Hill Day to date. Advocates and NephCure staff conducted over 70 in-person meetings with staff from congressional offices in the U.S. House of Representatives and U.S. Senate and hosted a briefing on the New Era of Preventing End-Stage Kidney Disease Act.

Now, NephCure is working with Congress to advance the New Era of Preventing End-Stage Kidney Disease Act in the 118th Congress as our key legislative priority. NephCure has collaborated with rare kidney patients, stakeholder organizations and advocates across the country to drive this important legislation forward, advocating for its passage and implementation to make a positive impact on the lives of those affected by rare kidney diseases.

In line with our unwavering dedication to leading the revolution in research, new treatments, and care, NephCure is committed to ensuring that the New Era Act becomes law, as it holds the potential to significantly improve the lives of individuals grappling with rare kidney diseases.

The Urgency for Action 

Kidney disease affects 37 million individuals in the U.S., posing significant health and financial burdens. Patients often face challenges such as delayed and inaccurate diagnoses, limited treatment options, and a lack of access to medical specialists. These hurdles can lead to the progression of kidney disease to end-stage, requiring dialysis or transplantation – treatments that impact the quality of life of patients and strain health care resources.

• Diagnosis. Gaps in early, accurate detection programs for chronic and rare kidney disease lead to higher health care costs and worse health outcomes.
• Treatment. The lack of FDA-approved and cost-effective therapies for RKD leaves patients without options to treat their disease. Over 90% of rare diseases have no cure.
• Specialized Care. Patients with kidney disease face barriers to access specialized care, which negatively impacts their health, treatment costs, and quality of life.