The National Kidney Foundation (NKF) made many strides this year to ensure kidney patients perspectives were considered and included in policy decisions. We also began an important new initiative to change the way Medicare pays primary care practitioners and nephrologists for detecting and managing chronic kidney disease (CKD) to ensure that future patients never have to ask the question “Why did my doctor not tell me I had kidney disease before my kidneys failed?” Below are some brief highlights from 2015:
1. Hosted our 2nd annual Kidney Patient Summit. The Summit brought
together six patient advocacy organizations and 100 kidney patients, family members, and living organ donors to visit 150 Congressional offices during National Kidney Month in March to advocate for improvements in kidney care. Dr. Griffin Rodgers, Director of the National Institutes for Diabetes and Digestive and Kidney Diseases (NIDDK), served as keynote for the event. Senator Chuck Grassley showed his support to fight kidney disease by wearing our kidney logo pin!
2. Launched a Kidney Patient Advocacy and Engagement Leadership Committee called the Kidney Action Committee (KAC). These 75 individuals from 43 states are all connected to kidney disease. The group consists of early stage kidney disease patients, dialysis patients (in-center, home hemodialysis, and peritoneal dialysis), kidney transplant recipients, living kidney donors, and family/caregivers of kidney patients. KAC members are leading NKF’s efforts to ensure all kidney patients’ voices and perspectives are included in the development and implementation of public policy, patient education and kidney disease research.
3. United with other patient and professional stakeholders to secure increases in NIDDK funding. Under an agreement reached by House and Senate leaders, the NIDDK will receive $1.97 billion in Fiscal Year 2016, $68.7 million above Fiscal Year 15 and $30.2 million above the President’s request. Funding for the National Institutes of Health (NIH) will be $32 billion, representing a $2 billion increase. Kidney Action Committee Patient Liaisons garnered the attention of their Members of Congress to support the increased funding requests by publishing 13 Letters to the Editor in the states of AR, AZ, CO, CT, DE, GA, LA, ND, NE, VA.
4. Developed and recommended a new approach to Congress that would align Medicare payments to primary care practitioners and nephrologists with earlier detection and better care for people with chronic kidney disease. Improvements in earlier detection and diagnosis of CKD will help prevent kidney failure and move kidney disease out of the top 10 leading causes of death in the United States.
5. Succeeded in getting CMS to agree to explore a new method and new measures to rate dialysis facilities’ quality of care through the Dialysis Five Star Rating program. This new system will allow kidney patients and families to make informed decisions on where they want to receive dialysis based on what they value most in their healthcare.
6. With two patient advocates leading the charge, NKF successfully fought discrimination of dialysis patients in health insurance plans in Oregon protecting dialysis patients’ choice to maintain private coverage or enroll in Medicare.
7. Sent tens of thousands of emails to Members of Congress through NKF’s Advocacy Action Center, utilizing patient voices and personal stories to support real change that will improve the lives of kidney patients.
8. Increased cosponsors of the Chronic Kidney Disease Improvement in Research and Treatment Act (S. 598/HR 1130), which will enhance current research efforts in kidney disease, increase access to education for kidney patients, and allow patients the same choice that other Medicare beneficiaries have to enroll in a Medicare Advantage plan
9. Helped launch the Congressional Primary Care Caucus, which will advocate for a stronger primary care workforce that has the resources to better manage chronic disease – including CKD.
10. NKF recommendations were included in the Food and Drug Administration’s (FDA) proposal to make it easier for patients and practitioners to identify biologic drugs by adding a four-letter suffix to the non-proprietary (generic) name. The assigning of a unique name to each biosimilar will aide in this awareness.