Winning the War on Kidney Disease: Perspective from the American Society of Nephrology : Clinical Journal of the American Society of Nephrology

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Winning the War on Kidney Disease

Perspective from the American Society of Nephrology

Rosenberg, Mark E.1; Ibrahim, Tod2

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CJASN 14(12):p 1792-1794, December 2019. | DOI: 10.2215/CJN.10180819
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Nephrology is unique. Having saved the lives of millions of people with kidney failure and advocated successfully for the federal government to cover every American on dialysis, the specialty now faces challenges that obstruct advances in care and innovation. More than one half of Americans who start dialysis today will be dead in 5 years. The federal government underfunds research into kidney disease compared with other diseases, venture capital has little interest in a disease that affects 850,000,000 people worldwide, and less innovation exists around kidney disease. Only 43.6% of nephrology fellowship programs and 62.7% of available positions filled in the most recent nephrology match.

Nephrologists treat people with tremendously complex, often deadly medical challenges. A profession built on producing miracles now lacks appropriate recognition and a sense of urgency (1). Every American must demand kidney health. The federal government must fund research into kidney disease at the same level as comparable diseases, such as cancer and diabetes. Nephrology’s current leaders must electrify the health professionals of the future. Together, the kidney community must overcome these challenges to thrive as a meaningful specialty and to extend the lives, and quality of life, for millions who will continue to die prematurely and unnecessarily.

Committing the federal government to create a system that “pays for kidney health, rather than kidney sickness,” President Donald J. Trump signed the Executive Order on Advancing American Kidney Health on July 10, 2019 (2). The nation’s first kidney health strategy aims to reduce the number of Americans with kidney failure by 25% over the next decade (3). The government also intends to double the number of kidneys available for transplant and provide more options to people with kidney failure, such as a greater emphasis on home dialysis and the creation of an artificial kidney.

Advancing American Kidney Health is the nation’s “War on Kidney Disease.” Bold goals, clear objectives, and sustained support from the government challenge the American Society of Nephrology (ASN) and the community to define a new era in kidney health and, ultimately, cure kidney disease. Piloting care-delivery models, accelerating kidney research and discovery, unleashing innovation and product development, and increasing access to transplantation will transform nephrology.

Working toward a world without kidney diseases, ASN, KidneyCure (the recently renamed ASN Foundation for Kidney Research), the Kidney Health Initiative (KHI), KidneyX, and Nephrologists Transforming Dialysis Safety (NTDS) now operate in unison as the ASN Alliance for Kidney Health. For more information about the alliance, please visit www.asn-online.org. By collaborating with organizations across the world, ASN addresses global issues in nephrology, such as using high-impact data to highlight the extent of kidney disease, evaluating the global nephrology workforce, promoting innovation to improve care, and prioritizing ethical issues in kidney care.

Accomplishing the goals established by Advancing American Kidney Health aligns with the vision, mission, and priorities of every element of the ASN Alliance for Kidney Health and the entire kidney community. For an overview of the community, please visit www.asn-online/caps2019.

Goal 1: Reduce the Risk of Kidney Failure

To prevent, detect, and slow kidney disease progression, the federal government, ASN, and the community must address “upstream risk factors,” such as diabetes and hypertension. This commitment requires raising awareness among at-risk populations; ensuring people in the early stages are identified and receive high-quality care; and slowing, delaying, or stopping the progression of kidney disease.

Nomenclature must change from CKD and ESKD to kidney health, kidney disease, and kidney failure to reflect this shift and increase visibility. The ASN Alliance for Kidney Health will work with the global community to change the emphasis from monolithic CKD to specific types of kidney disease, such as diabetic kidney disease.

NTDS has become a model for establishing new initiatives to improve care, such as the Diabetic Kidney Disease Collaborative and AKI!Now: Promoting Excellence in the Prevention and Treatment of AKI. ASN will harness this expertise to prevent, detect, and slow progression and support initiatives to track progression of kidney disease.

Through its longstanding relationships, ASN will partner with societies that represent family physicians, general internists, hospitalists, and pediatricians to promote screening, diagnosis, treatment, and referral of people with kidney disease. ASN will also help improve how kidney medicine is taught to students, residents, fellows, and other health professionals.

Goal 2.A: Improve Treatment Options through Research, Discovery, and Innovation

The federal government will “provide patients who have kidney failure with more options for treatment.” Ensuring 80% of new patients with kidney failure in the United States in 2025 receive home dialysis or a transplant propels care from in-center dialysis to home dialysis to portable dialysis to wearable kidneys to implantable kidneys to regenerated kidneys to solutions inconceivable today.

Funding for the National Institutes of Health must increase to support programs like APOLLO (APOL1 Long-Term Kidney Transplantation Outcomes Network) and the Kidney Precision Medicine Project as well as to establish a special kidney research fund of $150,000,000 annually. The executive order and the recent Government Accountability Office Report, National Institutes of Health—Kidney Disease Research Funding and Priority Setting, position kidney disease for funding increases (4).

Catalyzing innovation requires engagement with private and public entities as well as coordinating regulatory and payment policies to incentivize product development. Both KHI and KidneyX seek to prompt innovation and the development of patient-centered therapies across the spectrum of care. For example, the KHI Technology Roadmap for Innovative Approaches to RRT and the KidneyX Redesign Dialysis Prizes will help accelerate development of an artificial kidney (5,6).

As KidneyX stimulates private sector investment to produce therapies for every type of kidney disease, ASN will advocate for an annual $25,000,000 appropriation from the federal government to match the society’s commitment to the public-private partnership. Additionally, KidneyCure will provide approximately $3,000,000 annually in funding to kidney researchers.

Through KHI, KidneyX, and community-wide efforts, ASN will work with the US Food and Drug Administration and the Centers for Medicare & Medicaid Services to demystify regulatory and reimbursement processes. This effort includes helping the community embody an “on-study” culture to better support clinical trials as well as increasing funding and training for clinical trialists.

Goal 2.B: Improve Treatment Options through Kidney Care Models

The federal government is committed to improving “care coordination and patient education for people living with kidney disease and their caregivers, enabling more person-centric transitions to safe and effective treatments” (2). The Center for Medicare & Medicaid Innovation (CMMI) will introduce new value-based kidney disease payment models that “align health care provider incentives with patient preferences and improve quality of life” (2).

ASN will support CMMI’s launching five pilot kidney care models, help nephrologists participate in these models, and provide educational resources to transform kidney care. By leveraging its partnerships with the Centers for Disease Control and Prevention and the Making Dialysis Safer Coalition, NTDS will promote evidence-based interventions to prevent bloodstream infection in the nearly 500,000 Americans currently on dialysis.

ASN will work with accrediting bodies and certifying boards to transform nephrology training and promote lifelong learning among kidney health professionals. This modernization will increase expertise in areas such as home dialysis, telehealth, and transplantation. Simultaneously, ASN will advance its longstanding commitment to excellence in all aspects of professional education, including the next generation of basic scientists.

Goal 3: Increase Access to Kidney Transplants

To double the number of kidneys available for transplant by 2030, the federal government must increase utilization of available organs from deceased donors (increasing organ recovery and reducing discard rate) and living donors (removing disincentives to donation and ensuring appropriate financial support). ASN will press Congress to pass the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, ensuring access to immunosuppressive medications.

ASN will also urge Congress to pass the Living Donor Protection Act, protecting organ donors from employment and insurance discrimination. Additionally, ASN will recommend expanding the list of donation-related expenses for which donors can receive reimbursement.

Moreover, ASN will support actions by the federal government to align responsibilities, activities, and oversight of organ procurement organizations. ASN will simultaneously advocate for the Organ Procurement Optimization Act, requiring standardized, objective, and verifiable metrics to assess the performance of organ procurement organizations.

Transplant centers need the latitude to be less risk-averse, allowing greater use of “marginal” kidneys, transplanting more patients who may not be considered “optimal” candidates, and ensuring patient-centeredness. ASN will help reform processes that improve transparency, foster competition, and align incentives to focus on actual transplants performed as well as intermediate goals such as the number of people active on the waitlist. These efforts will help optimize the deceased donor matching process and improve the allocation process to maximize use of available kidneys.

Finally, ASN will support initiatives to reduce organ discard outlined in the National Kidney Foundation’s Kidney Discard Conference Report (7), and work with patient organizations to ensure patients are engaged in decisions to accept or decline kidneys. With the entire community, ASN will encourage living donation and explore transitioning to an opt-out donation system.

Through the executive order, the White House has established a practical framework for winning the War on Kidney Disease. Kidney health finally became a national priority in 2019, nearly 50 years after the federal government declared that every American with kidney failure must receive dialysis. The ASN Alliance for Kidney Health and the rest of the community must seize this moment and force transformational change in policy, legislation, and funding. The estimated 37,000,000 Americans with kidney disease deserve a future where kidney health, not kidney failure, is the focus, and innovation is the mandate.

Disclosures

Mr. Ibrahim is Executive Vice President of ASN and is President-Elect of the Council of Medical Specialty Societies. Dr. Rosenberg is President of ASN and reports honorarium support from Wolters Kluwer outside of the submitted work.

Acknowledgments

The authors thank Adrienne Lea for her help with this manuscript.

The content of this article does not reflect the views or opinions of the American Society of Nephrology (ASN) or CJASN. Responsibility for the information and views expressed therein lies entirely with the author(s).

Published online ahead of print. Publication date available at www.cjasn.org.

References

1. Richie H: Our World in Data: Does the News Reflect What We Die From? 2019. Available at: https://ourworldindata.org/does-the-news-reflect-what-we-die-from. Accessed August 23, 2019
2. Office of the Assistant Secretary for Planning and Evaluation; US Department of Health and Human Services: Advancing American Kidney Health, 2019. Available at: https://aspe.hhs.gov/pdf-report/advancing-american-kidney-health. Accessed August 22, 2019
3. United States Executive Office of the President [Donald J. Trump]: Executive Order 13,879: Advancing American Kidney Health, 10 July, 2019. Fed Regist 84: 33817–33819, 2019
4. US Government Accounting Office: National Institutes of Health: Kidney Disease Research Funding and Priority Setting [GAO-17-121], 2017. Available at: https://www.gao.gov/products/GAO-17-121. Accessed August 23, 2019
5. Kidney Health Initiative: Technology Roadmap for Innovative Approaches to Renal Replacement Therapy, 2018. Available at: https://www.asn-online.org/membership/BlastEmails/files/KHI_RRT_Roadmap1.0_FINAL_102318_web.pdf. Accessed August 22, 2019
6. US Department of Health and Human Services: HHS and the American Society of Nephrology Award KidneyX Redesign Dialysis Phase 1 Winners, 2019. Available at: https://www.hhs.gov/about/news/2019/04/29/hhs-and-american-society-nephrology-award-kidneyx-redesign-dialysis-phase-1-winners.html. Accessed August 23, 2019
7. Cooper M, Formica R, Friedewald J, Hirose R, O’Connor K, Mohan S, Schold J, Axelrod D, Pastan S: Report of national kidney foundation consensus conference to decrease kidney discards. Clin Transplant 33: e13419, 2019
Keywords:

United States; kidney diseases; nephrology; societies; AAKHI

Copyright © 2019 by the American Society of Nephrology