Nearly 810,000 people in the U.S. are living with kidney failure and according to the U.S. Renal Data System, about 5% do not know the cause of their kidney failure. Additionally, about 10% of the 37 million cases of kidney disease were attributed to unknown causes, according to a 2019 study published by The New England Journal of Medicine. Understanding the cause of your kidney disease can directly impact how your disease is treated, including whether there is something you can do to slow or stop it. That is why in 2020, the American Kidney Fund (AKF) launched our Unknown Causes of Kidney Disease (UCKD) Project.
Since its launch, the UCKD Project has been actively working across three areas that are critical to improving diagnosis and treatment of kidney disease: (1) finding public policy solutions, like improving access to genetic counseling and testing for people with kidney disease, (2) expanding education for health care providers and (3) educating patients about kidney disease testing options available to them.As part of these efforts, the UCKD Project has:
- Hosted a summit with leaders in the medical, research, academic and patient advocacy spaces to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes.
- Created a Roadmap for Addressing the Unknown Causes of Kidney Disease, a comprehensive guide that outlines how to improve diagnosis of the root causes of kidney disease.
- Conducted a survey examining the barriers and opportunities among health care providers to provide patients with a timely kidney disease diagnosis that identifies the cause of their kidney damage. The results of the survey provided new insights on the level of awareness among health care providers about less common causes of kidney damage and their approaches toward diagnosing and treating kidney disease.
- AKF will present a poster based on the survey results entitled, "Barriers to genetic testing for determining cause of kidney disease among healthcare providers" at the American Society of Nephrology Kidney Week 2022 Annual Meeting Nov. 5.
On Sept. 26, the UCKD Project took its next step, announcing the formation of the UCKD Coalition. The Coalition is comprised of 15 organizations and individuals who will work together to support policies and actions aimed at identifying kidney disease without a known cause. The Coalition will help with efforts to educate and inform policy makers about the state of rare kidney disease. It will also recommend strategies about how to address concerns around rare kidney disease, including how to and understand the causes behind them.
Members of the UCKD Coalition are as follows:
- Alexion, AstraZeneca Rare Disease
- Alport Syndrome Foundation
- American Kidney Fund
- Delphine S. Tuot, MDCM, MAS; Associate Professor, University of California, San Francisco, and Interim Division Chief, Zuckerberg San Francisco General Hospital
- Emory School of Medicine
- Fabry Support and Information Group
- Frances Ashe-Goins, R.N., MPH, FAAN, kidney patient caregiver, AKF Ambassador and UCKD Task Force Member
- National Organization for Rare Disorders
- National Society of Genetic Counselors
- Otsuka America Pharmaceutical, Inc.
- Travere Therapeutics
- Vertex Pharmaceuticals Inc.
Members of the Coalition will write letters to Congress, federal agencies and independent panels to support patient-centered changes, host Congressional briefings related to rare kidney disease or kidney disease of unknown origin and participate in other advocacy efforts that will help with the goals of the UCKD Project.
The UCKD Project is made possible by support from Title Sponsors Sanofi and Novartis; Leadership Sponsors Otsuka America Pharmaceutical, Inc., Vertex Pharmaceuticals Inc. and Travere Therapeutics; and Champion Sponsors Alexion, AstraZeneca Rare Disease; and Natera.