When treating patients with rare kidney diseases, doctors realize how much progress is achievable when scientists have the support they need.
In the United States, 35 million people live with chronic kidney disease, including tens of thousands with rare conditions. These illnesses are difficult to identify and diagnose, and they can be life-changing for patients and their families.
Patients with rare kidney disease often wait years for even modest improvements in care. This is why sustained federal research funding, particularly through institutions such as the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), is so crucial. Clinical breakthroughs and new treatments wouldn’t happen without government support, and these efforts improve and save lives and help maintain U.S. leadership in medical innovation.
Over the past decade, federally supported funding has led to the development of new therapies and research for rare kidney diseases, benefiting patients and their healthcare providers. The effect of this funding goes well beyond hospitals.
According to the Association of American Universities, NIH research funding supports 400,000 jobs and adds more than $94 billion annually to the economy. The same institutions supporting medical research are also creating jobs and driving economic growth, and training the next generation of researchers in the medical field.
Currently, Congress is considering merging the NIDDK into a larger umbrella federal agency. That’s a mistake. NIDDK has been a vital resource for people with rare kidney diseases.
Weakening the mission of NIDDK or cutting its funding would jeopardize the research that is finally giving hope to patients and risk derailing the development of treatments being tested for patients.
Not long ago, these rare kidney conditions were ignored and underfunded. Thanks to advocates and strong support from researchers, doctors and clinicians, we are witnessing a new era of research: more clinical trials, greater scientific understanding, and the development of new treatment options for diseases that previously had none. In fact, the NIH Rare Diseases Clinical Research Network has enrolled 6,600 patients across 48 clinical studies.
The targeted approach that NIDDK has employed to advance rare disease research has helped bring that future within reach. Over the past decade, nearly 9,000 scientists and clinicians have received training or support through NIDDK, and NIH-supported research has contributed to 99 percent of all new drug approvals. In the rare-disease field, these efforts have laid the groundwork for improved care and life-saving innovations.
Much of this progress has been made possible through collaboration between researchers, advocates and organizations that connect patients, families and the scientific community. Sustained momentum like this depends on strategic investments and institutions with focused, mission-driven leadership.
For families living with rare kidney disease, every dollar of research funding pays dividends in the form of hope, time and the possibility of improving care. This funding is the difference between progress and stagnation.
These patients don’t have time to wait. And they certainly can’t afford to be sidelined by bureaucratic reshuffling or short-sighted cuts. If Congress is serious about delivering cures and improving lives, it must protect NIH funding and preserve the distinct role of NIDDK. Because when we protect focused research, we protect lives.