ASN President's Update: The Kidney Revolution: Turning a Moment into a Movement

Susan E. Quaggin Susan E. Quaggin, MD, FASN, is with the Division of Nephrology and Hypertension, Northwestern University Feinberg School of Medicine, Chicago, IL, and is ASN President.

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During this year's Kidney Week, I began my ASN President's address with a paradox: Nephrology, as we once knew it, is dying…and that is the best possible news!

In the 1960s and early 1970s, nephrologists might have had the heart-wrenching task of informing patients with kidney failure that they had not been selected to receive lifesaving dialysis—decisions made by panels, dubbed God committees. Former ASN President William M. Bennett, MD, FASN, recalls having to give this news to a young mother who developed acute kidney failure following labor and delivery (1).

And twenty-nine years ago, as a community, we celebrated the publication of the captopril trial that demonstrated benefits of angiotensin-converting enzyme inhibition to slow progression of diabetic kidney disease (2). However, this win for patients was followed by more than 2 decades of largely negative trials in our field, without a single new class of therapies identified to reduce the increased risk of mortality in patients living with kidney diseases.

In 1989, the Berlin wall came down, the worldwide web launched, and the Nobel Prize in Physiology or Medicine was awarded for the discovery of retroviral oncogenes. That same year, I attended my very first American Society of Nephrology Annual Meeting and chose nephrology as my specialty. I have seen the incredible transformation in our specialty, measured in these few short decades.

Today, we can stand up as a community and shout from the rooftops that nephrology's moment has most certainly arrived. Stagnation and lack of innovation do not define our field.

What marks this seismic shift?

  • Perhaps it began in 2015, with the publication of the EMPA-REG trial (3), rapidly followed by a multitude of positive clinical trials with such powerful beneficial effects that we now have the capability to truly impact the progression of kidney diseases, reduce mortality, and treat comorbid conditions, including heart failure.

  • Multiple, new therapeutic classes have been identified, including flozins, non-steroidal mineralocorticoid receptor antagonists, and glucagon-like peptide 1 agonists. In 2022 alone, the US Food & Drug Administration has granted nine full approvals and eight breakthrough designations for kidney-related treatments and devices, including new platforms to diagnose kidney diseases, treatments approved for lupus nephritis, gene-directed therapies, and innovations in dialysis.

  • Breakthroughs in artificial intelligence, nanomedicine, stem cells, gene therapy, genetic discoveries, and beyond continue to emerge from laboratories throughout the world.

  • We have witnessed major policy wins in the United States with the introduction of the federal policy to advance American kidney health in 2019 (4), the passages of immunosuppressive legislation in 2021 (5, 6), and bipartisan support for the Living Donor Protection Act of 2021 this year (7).

  • Xenotransplantation has matured with the first in-human clinical trials set to begin as early as next year (8, 9)! Concurrent with innovations and discoveries transforming our field, accelerants have brought us together as a global community like never before.

  • Faced with natural and manmade disasters, we worked together to ensure our patients received the best possible care—whether during the pandemic or in war-torn regions, such as Ukraine. We combatted water issues in Jackson, MS, and the aftermath of hurricanes to care for our patients. We continued to fight even when exhausted and even in the face of personal loss.

  • As civil unrest erupted around the globe, it placed a much-needed focus on disparities that drive diseases, including kidney diseases. Again, our community responded. We heard the calls to remove race from clinical algorithms. We were not the only specialty called upon, but we were the first and only specialty to date to provide a race-free formula (10). The kidney community led so others may follow.

Never—in my entire time in our field—has there been a time of such hope than at this moment, giving us the opportunity and the charge to turn this moment into a full-blown movement.

Every movement must have a vision. In 2019, ASN recrafted its vision statement to: A World without Kidney Diseases.

This is bold and ambitious. To some, it might seem impossible, but in the words of Evan Wolfson, a gay rights activist: “Ambitious goals are often seen as impossible until they are achieved, at which point they become inevitable, a matter of simple common sense and justice. The movement is what happens in between.” If we are going to harness the promise of these powerful, new treatments and bend the arc of kidney diseases, we must push boundaries, and we must transmit innovations to all those who will benefit.

But first, it is essential that we know who has kidney diseases.

In the United States and in many countries, there are no standalone recommendations to screen for kidney diseases. This year, ASN worked with the National Kidney Foundation and other patient organizations to push the US Preventive Services Task Force to revisit its very outdated recommendation that there is no evidence to screen for kidney diseases because there are no interventions available other than managing diabetes and high blood pressure. With all the recent successes in our field, this statement is no longer true.

We must move kidney diseases out from the shadow of other diseases.

  • It is unacceptable that 90% of the more than 37 million people in the United States living with kidney diseases do not know they are at risk for kidney failure (11).

  • It is unacceptable that many patients “crash” into dialysis in the hospital setting without ever knowing their kidneys were at risk.

We must embrace prevention if we are to provide the best care, educate the public about the risks, and expand the living donor pool. In the words of former International Society of Nephrology President Adeera Levin, MD, “It is time to change the narrative and move from screening for kidney diseases to screening for kidney health.”

We must stay vigilant, as new threats to our core values—patients first, always—emerge. In today's world, our diligence includes challenging policies, lawmakers, and misinformation that threaten our patients and our responsibility to provide the best care.

When we joined the profession of medicine, each of us recited an oath based on the Hippocratic Oath. As stated in the World Medical Association Declaration of Geneva, “I will not permit…any other factor to intervene between my duty and my patient” (12). We must stand up to policies that criminalize best care or threaten the interaction among physicians, health care team members, and our patients.

We must expand our advocacy and demand the increased funding necessary to combat the scope and reach of kidney diseases. In 2021, the National Institutes of Health spent an estimated $960 per patient with cancer, $560 per patient with Alzheimer's disease, and only $18 per patient with kidney diseases (13).

Why is one-third of dialysis treatment chairs in the United States filled with patients who are African American/Black, when only one out of eight people in this country is African American/Black? Why is 7% of the entire Medicare budget spent on treating kidney failure, and the powerful, new therapies that could delay the need for dialysis by an estimated 15 years are not yet widely available to all (14)?

Could it be that those in charge—policymakers, executives, and purse-string holders—are not able to put themselves into the shoes of people or their families living with kidney diseases?

We know that when those in charge see—truly see—amazing things happen.

  • October 30, 2022, marked the 50th anniversary of the Medicare End-Stage Renal Disease Program, a federal initiative ensuring dialysis was a right of all US citizens, which has saved an estimated 1 million lives (15). Historical records tell us that a patient and a nephrology fellow showed members of Congress what dialysis entailed. The patient, Shep Glazer, a salesman and father from New York, asked members of Congress, “If your kidneys failed tomorrow, wouldn't you want the opportunity to live?” (16).

We must make kidney disease personal. It is up to each of us to partner with patients, to listen to them, and to amplify their voices, which are by far the most powerful and the most influential.

We must also push for increased diversity of representation and decision-making power of those in charge and at every level of our community.

The kidney community has long recognized the need for diversity and is home to many trailblazers in this arena. Since 1989, ASN membership has diversified to include members from more than 130 countries. In 2013, ASN launched a diversity work group that became the Diversity, Equity, and Inclusion Committee in 2017 and the Health Care Justice Committee in 2021. This year, ASN welcomed the first five recipients of the ASN Loan Mitigation Pilot Program (for fellowship applicants from communities traditionally underrepresented in medicine) (17). These superstars will undoubtedly change our field.

While we must celebrate these advances, we must also recognize this is just the beginning. There is much more work to do. We must remain accountable each and every day and take action when we, or others, fall short. We will not achieve our shared goal—our ambitious vision—unless we continue to build diversity and transparency in decision-making and representation at every level of our field and wherever we have influence.

And when we succeed, where will this moment—this movement—take us? Twenty or 30 years from now, Kidney News will be reporting new genetic discoveries and other fundamental advances guiding prevention, treatments, and cures for every form of kidney diseases. Everyone will know their kidney “number,'' and we will be armed with powerful, new therapies and best treatments that will be available to all patients as we continue to shift the focus from kidney diseases to kidney health.

Nephrology, as I once knew it, has moved to a much brighter future, and I have never been filled with more hope or optimism for what we will accomplish together.

Undoubtedly, there will be challenges along the way. However, we do not shy away from challenges. To paraphrase Nelson Mandela: “The greatest glory in living lies not in never falling, but in rising every time we fall.”

And remember, as physicians, health care team members, investigators, patients, and advocates, we always rise, and we always rise together.

  • We stood up and said no to the status quo.

  • We put an end to the God committees and death panels.

  • We learned from the negative trials and persevered.

  • We stood up to eliminate disparities and worked for true health justice.

  • We fought against a devastating disease and stood up to those who did not care or who considered dialysis the endgame.

  • We made the discoveries that have changed our field.

As I pen my last column as ASN President, I ask each of you to rise up in this moment and join the movement—the revolution.

It is up to us to make a world without kidney diseases not impossible but inevitable.