The consequences of this paralysis are measured in human lives and taxpayer dollars. More than half of those who end up on dialysis first learn of their condition in an emergency room. Innocent people are suddenly blindsided by a diagnosis that, in many cases, could have been caught years earlier with a simple, inexpensive screening. The annual cost of kidney care in the United States now exceeds $100 billion, with dialysis alone consuming more than $30 billion in taxpayer and Medicare spending. Behind every dollar is a human being whose life has been upended, whose career has been derailed, and whose family has been thrown into crisis. Kidney disease is not merely a healthcare crisis; it is a workforce crisis, driving elevated unemployment among patients, swelling the organ transplant waitlist, and increasing demand for taxpayer-funded dialysis and Social Security Disability Insurance outlays.

Silverstein and Wong fear that Kennedy might promote “dubious treatments” or “unproved” prevention strategies. But the treatments that kidney patients are asking the USPSTF to consider are neither dubious nor unproved. New FDA-approved therapies, including SGLT2 inhibitors and nonsteroidal mineralocorticoid receptor antagonists, have been shown to meaningfully delay kidney failure when initiated early. Novel diagnostics and biomarkers — functional, immunological, genomic, and proteomic — now enable clinicians to stratify risk with unprecedented precision and to intervene before irreversible damage occurs. Federal data from the Department of Health and Human Services — data readily available to the USPSTF — demonstrate that early detection and intervention can slow disease progression, reduce the need for dialysis, and keep patients in the workforce. These are not fringe ideas promoted by supplement hawkers. They are mainstream, evidence-based advances that the task force has simply ignored.

The former chairmen lament that Kennedy accused the panel of being “lackadaisical and negligent.” From the perspective of the kidney patient community, that description is both generous and diplomatic. In 2019, President Donald Trump signed a historic executive order on “Advancing American Kidney Health” — a clear and unambiguous call for earlier kidney disease prevention, detection, and intervention, developed in close collaboration with kidney patients, bipartisan congressional leaders, and medical innovators. Yet despite this presidential mandate, the case for routine kidney disease screening — overwhelming on its merits — remains unheeded by the USPSTF. The task force has not adequately considered all available evidence supporting kidney disease screening, including patient insight data, nor has it kept pace with new diagnostics and FDA-approved therapies that slow disease progression.

Silverstein and Wong argue that “the American people can trust disease prevention guidance only if it’s produced by people who are not influenced by political ideology, corporate dollars, advocacy organizations or preconceived notions.” We agree. But the USPSTF’s own insularity is itself a form of bias. The task force has lacked meaningful representation from nephrologists, transplant professionals, and — most critically — kidney patients themselves. Unlike other HHS advisory bodies such as those under the Food and Drug Administration and the Centers for Medicare and Medicaid Services, which have embraced patient engagement as a cornerstone of modern policymaking, the USPSTF has remained insular and paternalistic. It has dismissed patient insight data, ignored the real-world experience of millions of people, and clung to an outdated framework that treats kidney disease as someone else’s problem. Silverstein and Wong’s column itself illustrates the problem: They speak eloquently about cancer and HIV prevention but say nothing about the disease that costs taxpayers more than $100 billion annually and catches most of its victims by surprise.

It is worth noting that Kennedy intends to change the makeup of the task force beyond primary care doctors, encouraging specialists such as cardiologists, oncologists, and radiologists to consider serving. The former chairmen and some of their allies worry that specialists “may not have the needed breadth of knowledge.” But the status quo — a panel of generalists that has failed for a quarter-century to prioritize kidney disease — has not served patients well either. A body that incorporated nephrologists, transplant professionals, and the voices of patients who live with this disease every day would be far better equipped to weigh the evidence and act on it.

MEET THE OZEMPIC VOTERS. THEY COULD DECIDE THE MIDTERM ELECTIONS

The American Association of Kidney Patients, the nation’s oldest and largest independent kidney patient organization, publicly called for the dismissal of the current USPSTF in 2024 for precisely these reasons. That call was not made lightly. It was made because patients are dying while the task force deliberates. We have urged the health and human services secretary to dismiss the current USPSTF and replace it with a new, citizen-centered advisory body that incorporates patient representatives alongside medical experts in nephrology and organ transplantation — a body empowered to weigh patient insights and scientific evidence equally. We are convinced that a one-hour meeting with a diverse group of kidney patients, transplant recipients, organ donors, and front-line nephrologists would yield more effective kidney health policy than the USPSTF has produced in the past 25 years.

Our perspective may differ from those of establishment medical organizations, such as the American Medical Association, and other defenders of the USPSTF status quo. But as kidney patients who have lost too many friends and family members to this disease, we believe our voices are not merely welcome — they are essential. The USPSTF’s failure to recommend kidney disease screening is not caution — it is negligence. Every day of inaction costs lives, squanders taxpayer dollars, and sends an unmistakable message to the kidney community: you are not a priority. Silverstein and Wong are right that people deserve trustworthy preventive health guidance. But trust is earned through action, not through decades of institutional inertia. It is long past time to prove that kidney patients matter.

Edward V. Hickey III is the president of the American Association of Kidney Patients, a chronic kidney disease patient, and leads the nation’s largest nonpartisan kidney community voter registration program.