Transforming, Ensuring Access to Optimal Kidney Care Top ASN Public Policy Board 2017 Agenda There is nothing permanent except change. —Heraclitus

Full access

Heraclitus could have been speaking about the present-day practice of medicine with his gaze focused on the future—especially in nephrology. American Society of Nephrology (ASN) President Raymond C. Harris, MD, FASN, recently underscored this thought in ASN Kidney News when he wrote “how we practice currently will be very different from practice patterns 20, 10, or even 5 years from now.”

Currently, ASN’s Public Policy Board (PPB), along with other key partners in the kidney care community, are working to channel that change into three separate, yet complementary, paths as it plans for 2017 and beyond.


Kidney transplantation is the optimal form of therapy for the nearly half million Americans and millions of people around the world suffering from kidney failure. However, the US kidney transplant waitlist—approximately 100,000 Americans—is growing, and the average wait time for a transplant is 5 years. Most patients on dialysis will die before their name is ever called.

ASN is pledging the first $7 million toward a global prize competition to develop a novel wearable or implantable device that replaces kidney function and improves patient quality of life, in partnership with the XPRIZE Foundation. XPRIZE designs and implements innovative competition models that utilize the unique combination of gamification, crowd-sourcing, incentive prize theory, and exponential technologies to solve the world’s grandest challenges.

Furthering the progress of innovation, ASN and the Veterans Administration have announced the Kidney Innovation Initiative, a partnership of ASN and the US Department of Veterans Affairs (VA) that challenges innovators worldwide to compete in developing technology resources that improve quality of life and outcomes for people with kidney diseases and those anticipating a kidney transplant. The first step will be the development of an app for veterans and others with kidney disease to use to monitor their health and help them take control of their disease. More than 1 million veterans suffer from kidney diseases.

ASN and 34 other kidney care community members are advocating for a research budget of $2.165 billion for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) for 2017. The group is pushing Congress for an additional $150 million per year over 10 years for NIDDK kidney research above the current funding level. With nearly 7% of Medicare’s budget dedicated to the treatment of patients with kidney diseases—even though they are only 1% of the Medicare population—the federal government must increase its funding of kidney research.

Transforming Care

MACRA is just beginning to shape the future of health care delivery. ASN and other organizations strongly urged the Centers for Medicare & Medicaid Services (CMS) to provide flexibility in the first performance period slated to begin January 1, 2017, and CMS has done so. Providing a solid base for the transformation of quality care should not be rushed. Now, physicians in the Merit-Based Incentive Payment System (MIPS) may:

  1. Test the quality payment program with some data from January 1, 2017, or after,

  2. Participate by submitting data for part of the 2017 calendar year in the three categories of quality, technology use, and practice improvement,

  3. Participate for the full calendar year of 2017,


  4. Participate in an Advanced Alternative Payment Model in 2017.

With the goal of advancing quality care for patients with advanced chronic kidney disease (CKD), ASN is building support at CMS and the Center for Medicare and Medicaid Innovation (CMMI) for the creation of a care delivery model encompassing the spectrum of advanced CKD for the duration of a patient’s life. The model should be in keeping with the development of Alternative Payment Models (APMs) as MACRA is implemented. The model could include both individuals receiving and not receiving kidney replacement therapy and prioritizing transplantation (including preemptive transplantation) or comprehensive conservative care management as appropriate, while aligning incentives to deliver the most high-quality, cost-effective, individualized care for patients with kidney diseases.

Advocating for improvements in the Quality Incentive Program (QIP), the ASN Public Policy Board continues to voice its goal of fewer and more meaningful quality measures that accurately measure high value care for patients with kidney diseases.

Access to Optimal Care

Patients with advanced kidney diseases almost always have multiple serious chronic co-morbidities, including diabetes, hypertension, peripheral vascular disorders, and heart failure. More than 50% of patients with CKD have 5 or more other co-morbid conditions, and CKD is included among 4 of the 5 most costly chronic condition combination triads in the Medicare program (CMS Office of Information Products and Data Analytics, August 2014). Therefore, access to optimal care can take multiple forms when it comes to CKD, end stage renal disease (ESRD), and acute kidney injury (AKI).


Every 14 minutes a patient is added to the 100,000+ person kidney waitlist, and 13 Americans die each day waiting for a kidney transplant. Yet the number of living organ donations has slowed over the past 10 years. The Living Donor Protection Act (LDPA – H.R. 4616/S. 2584) strongly supported by ASN would help address these grim statistics by eliminating obvious and unnecessary barriers to living organ donation. LDPA effectively would:

  1. Ensure living organ donors have equal access to life, disability, and long-term care insurance,

  2. Allow living organ donors Family and Medical Leave Act “time off” to recover, and

  3. Educate Americans about living donation.

ESRD is the only pre-existing condition that explicitly prevents Medicare patients from enrolling in Medicare Advantage (MA) plans, thereby barring them from selecting a plan that best fits their medical and financial needs. To address this concern, ASN is advocating for the Expanding Seniors Receiving Dialysis Choice Act of 2016, the ESRD Choice Act (H.R. 5659). This bill could help end that prohibition and create equitable choice for patients with ESRD.

Following the June 2016 White House Organ Summit, ASN is working with the Administration to continue advocating for policy solutions to the organ donor shortage. Looking forward, ASN is working to identify policy solutions to address barriers in wait-listing, including addressing the many patients who cannot get wait-listed because they do not have secondary insurance.

Home Dialysis and AKI-D

The Government Accountability Office (GAO) has verified that home dialysis utilization is significantly lower than experts and stakeholders believe it could and should be. ASN and other members of the kidney care community have urged CMS to identify and remove some of the disincentives to home dialysis. These efforts include increasing payments for home dialysis training/retraining and adding home dialysis monthly codes to the Medicare telehealth list among other steps.

Further expanding patient-specific access to care is at the heart of advocacy efforts to promote policies that recognize the unique needs and courses of care for patients with dialysis-requiring acute kidney injury (AKI-D), especially as these patients are discharged from the hospital to outpatient ESRD facilities to continue dialysis while awaiting recovery. Patients with AKI-D require a care delivery process that facilitates their rehabilitation and is distinct from care for patients with ESRD. ASN continues to work with CMS to fine tune policies that allow nephrologists and ESRD facilities to individualize AKI-D care and allow Medicare to reimburse those services accordingly.