We are thrilled to share that the New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”), which ISGD has been advocating for in partnership with NephCure, has been officially introduced in this session of Congress. This legislation, introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), holds the potential for significant improvements in rare kidney disease (RKD) resources available in the United States.
Its key goals and provisions include:
- 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.
- 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.
HOW YOU CAN HELP
The bill is now being reviewed by the various relevant committees in the House of Representatives. In order to make sure it gets passed in the House and makes its way to the Senate, now is the time to contact your House representatives and let them know how important it is that they support this bill. Our legislators need to hear from you about the negative impacts of rare kidney disease on the patients you treat, and the positive opportunities to benefit their district by supporting your research and clinical care. Your personal stories really do make a difference. We have seen in person that it's very impactful when Members of Congress hear from both patients and physicians.
Our colleagues at NephCure have set up an easy, automated system to contact your representative. It comes with a prefilled letter explaining why they should support the New Era Act, which we highly encourage you to personalize further with your own thoughts on the importance of the bill. Make sure to mention the benefits it will bring to their district. Despite polarization in Congress, medical research and health initiatives enjoy broad bipartisan support.
If you can spare 20 minutes to go the extra mile, it would make an additional impact to call your representative's office (after Congress is back in session on January 8) and see if you can speak with their legislative assistant for health policy. You can look up your representative's contact information here.
No time to email or call your legislators? Tag them on X/Twitter. They pay attention (or their staffers do!) Let them know how important it is to improve kidney disease research and treatment.