The third day of the ASN Kidney Week Annual Meeting included a heavy emphasis on the patient perspective of kidney disease. Three concurrent sessions on Saturday afternoon included speakers living with kidney disease. One of those sessions was the Celeste Castillo Lee Memorial Lecture, a unique lecture amongst medical society meetings. Named for a visionary member of the Kidney Health Initiative (KHI) Board of Directors, an advocate for people with kidney diseases, and founder of the KHI Patient and Family Partnership Council, the lecture elevates the patient perspective during the kidney community’s most prestigious meeting.
Asking people with kidney failure what matters to them is critical for patient centered innovation. If that information can be collected in a scientifically rigorous way, it can inform industry and regulatory decision making.
The Kidney Health Initiative (KHI) is launching a new project in collaboration with the US Food and Drug Administration (FDA) to collect patient preference information on innovative renal replacement therapies (RRT). The three-year project, funded by the FDA, will produce a survey that captures scientifically valid patient preference and risk tolerance data from people with kidney failure to drive innovations in RRT. This information is increasingly important as innovation accelerates in the kidney community. The Advancing American Kidney Health initiative identified this need, directing the FDA to “develop a new survey to gain insight into patient preferences for new kidney failure treatments”.
Today, the American Society of Nephrology (ASN) and the National Kidney Foundation (NKF) announced a new partnership with the US Department of Health and Human Services (HHS) to work on the new Public Awareness Initiative outlined in the Executive Order on Advancing American Kidney Health. The goals are to enhance awareness of kidney disease, educate clinical professionals and spur innovation by entities serving the kidney disease community.
In a Friday, October 4, Washington Post opinion piece, former White House Office of Science and Technology Policy staffer Jennifer Erickson calls for a reform of the current United States organ procurement system. Erickson cites research that "thousands of organs go unrecovered every year from potential donors across the country." These missed opportunities for organ recovery occur, she argues, due to mismanagement by organ procurement organizations (OPOs), the nonprofit government contractors responsible for organ procurement and placement. Because OPOs self-report their own performance data, the reporting is “functionally useless” with “no system accountability,” said Erickson’s former colleague from the Obama administration U.S. Chief Data Scientist DJ Patil.
The U.S. FDA has now approved INVOKANA® (canagliflozin) as the only type 2 diabetes (T2D) medicine indicated to treat diabetic kidney disease (DKD) and reduce the risk of hospitalization for heart failure in patients with T2D and DKD. Approximately 1 in 3 patients with T2D also has DKD, which can ultimately lead to kidney failure. Once patients reach kidney failure, the average 5-year survival is less than 40%, largely due to cardiovascular-associated morbidity and mortality. This is the first new treatment option in nearly 20 years indicated to slow the progression of DKD in these patients.
In a bold move to increase organ transplantation, the Centers for Medicare and Medicaid Services (CMS or Medicare) has finalized a proposal “to remove the requirements at § 482.82 (conditions of participation for transplant centers) that require transplant centers to submit clinical experience, outcomes, and other data in order to obtain Medicare re-approval.” The American Society of Nephrology (ASN) and other members of the kidney community advocated for this change to reduce the unintended consequences associated with the re-approval process.
Reducing the benchmark for the combined home dialysis and transplant rate and allowing for incremental achievement of the benchmark, incentivizing and investing wisely to ensure needed practice transformation, and delaying the start date of the ESRD Treatment Choice Model (ETC) until April 2020 are among the recommendations for adjustments to the model set forth in a letter sent to CMS Administrator Seema Verma on behalf of ASN and its members from President Mark E. Rosenberg, MD, FASN.
Ensuring that Nephrology fellowship programs provide quality training in all aspects of kidney care
These topics are of primary interest to kidney professionals concerned about the future of nephrology. The interest of students and residents in pursuing careers in nephrology has waned over the past decade. With the increasing population of patients with kidney diseases, now approaching 40 million in the United States, these issues must be addressed immediately, in order to sustain a sufficient workforce to care for patients with kidney diseases. Furthermore, the success of exciting programs such as KidneyX and Advancing American Kidney Health, which are designed to catalyze innovation and transform patient care, depends upon establishing a robust pipeline of talented young physicians and scientists in nephrology. Key among the groups of leaders who regularly address issues concerning the field of nephrology are nephrology division chiefs and training program directors (TPDs). Whereas TPDs have successfully addressed many training program issues, there was a need to engage division chiefs to address other issues that extend beyond the purview of TPDs. Therefore, in 2018, the American Society of Nephrology convened a small group of division chiefs to discuss these issues in depth and design a blueprint on how ASN might work with division chiefs to promote positive advances.
Made possible by a grant from Baxter Healthcare Corporation, the effort called AKI!Now: Promoting Excellence in the Prevention and Treatment of Acute Kidney Injury, will aim to help people suffering from acute kidney injury (AKI).
“Each year, approximately 10 million people worldwide suffer from acute kidney injury, and it kills an estimated 1.75 million of them,” commented ASN President Mark Rosenberg, MD, FASN. “ASN is bringing together some of the best minds in the kidney community to figure out how we can save more lives after AKI and kidney failure as well as to improve their quality of life.”
Dr. Amaka Eneanya spoke recently on NPR’s Weekend Edition Saturday about the Trump Administration’s strategy for “Advancing American Kidney Health.” Dr. Eneanya is an assistant professor of medicine at the Hospital of the University of Pennsylvania, a practicing nephrologist, and an ASN member (@AmakaEMD).