January 1st to December 31st are really just marks on a calendar. Our story, at any given time, is one of continuing adaptation to best help people affected by kidney disease. Summarizing NKF in 2016 is capturing a freeze-frame of a movement in motion. 2016 was the beginning of evolution and revolution in the way that we reach people and help them. 2016 was a lead-in year, gathering momentum for big changes in 2017.
If you’re reading this, kidney disease has an impact on your life, personally, as a public health issue, or as a taxpayer. Really, every year is “your year” at NKF—but especially during this time of change.
NKF is re-focusing on the whole patient through the lens of kidney disease. The Foundation is changing its identity and overall strategy to that of an activist, advocacy organization, better connected to people. 2016 was the start of something big.
Meanwhile, here are some accomplishments from this transitional year:
1.We announced The Live Donor Champion Program
NKF in partnership with Johns Hopkins University and Novartis announced The Live Donor Champion Program at the White House Organ Summit in June. The program will help patients overcome common barriers to finding a living kidney donor.
2. We held a summit to build a road map for kidney disease prevention
Held in New York City, theCKDintercept Summit brought together major healthcare leaders and stakeholders to develop practical ways to detect and treat earliest stage kidney disease in millions of primary care patients. Chaired by former U.S. Surgeon General Regina Benjamin, this was a major step toward reducing preventable kidney disease.
3. We brought together 100 patient advocates to raise CKD awareness on Capitol Hill
A major Kidney Patient Summit was held in March in Washington D.C. where patient advocates from 44 states participated in 175 congressional meetings to advocate for policies that promote early detection and additional federal research funding for kidney disease.
4. We shaped public policy on behalf of kidney patients
Our Kidney Advocacy Committee members—an active group of liaisons representing almost every state in the U.S. and the full spectrum of kidney disease—participated in a letter writing campaigns to pass The Living Donor Protection Act (H.R. 4616/S. 2584) which will protect living organ donors from insurance and job discrimination and remove barriers to donation. They also acted as patient-centric advisors, panelists, and participants for such events and initiatives as the Food and Drug Administration (FDA) Public Meeting to promote innovation in immunosuppressive therapies, and the Steering Group for the NKF Consensus Conference to Decrease Kidney Discards.
5. We assisted thousands of patients seeking information and support
The NKF Cares Help Line provided answers, support and a listening ear to over 14,000 people who contacted us by phone or email. NKF’s mentoring program, NKF Peers, matched over 140 kidney patients, living donors and potential donors with each other for support. We now have 75 current active mentors, including 16 living donors. NKF tested over 10,000 people for kidney disease through our KEEP Healthy program and provided education about the risk of kidney disease to over 14,000 people through our Your Kidneys and You program and online educational video.
6. We joined the Medicare Advantage Care Coordination Task Force in D.C.
The MACC Task Force, comprised of more than 30 partner organizations, is committed to advancing best practices in care delivery for Medicare beneficiaries, including those with chronic kidney disease.
7. We trained thousands of professionals at the NKF Spring Clinical Meetings
The conference attracted a record number of attendees (3,177) in Boston, MA, and included more than 130 sessions focused on improving patient care. Important findings from the Systolic Blood Pressure Intervention Trial (SPRINT) were also presented on the topic of blood pressure targets in CKD patients. In addition, more than 4,700 healthcare professionals used Kidney Learning Solutions’ (KLS) Professional Education Resource Center (PERC), containing more than25 accredited online activities, to obtain the continuing education credits needed to maintain their licensing/certification. NKF’s KLS also educates both professionals and patients through clinical bulletins, educational videos, Facebook posts, brochures, and online tools and programs.
8. We funded promising research projects
During Fiscal Year 2016, NKF awarded grants for research on cell damage mechanisms, polycyctic kidney disease, kidney disease and the sleep-wake cycle, salt-sensitive hypertension, malnutrition and olfaction, and other topics. Since the research grant program’s inception, NKF has distributed over $100 million to promising researchers and their projects.
9. We testified before the FDA in Kidney-Friendly Food Labeling
The FDA announced its final changes to the standard Nutrition Facts Label on foods. The new labeling requires manufacturers to list amounts of potassium and calcium label beginning 2018. Kidney patients often find it challenging to know how much potassium and calcium are contained in their foods.
10. We collaborated with the CDC to make dialysis safer
NKF collaborated with the Centers for Disease Control and Prevention (CDC) on a new coalition designed to make dialysis safer for people with kidney disease. The new initiative, Making Dialysis Safer for Patients Coalition, aims to help reduce the risk of bloodstream infections among hemodialysis patient.
This summary only tells part of the story of the hard-working staff and supporters at the Foundation. Local offices, as always, have been moving on our mission throughout the country, with the New York City office holding its biggest Kidney Walk ever, the Midwest conducting a record number of KEEP Healthy events, and the Pittsburgh Office being awarded a Highmark Foundation grant to assist with awareness and prevention efforts for at risk people.
The coming year promises a complete transformation of this organization to the benefit of the people we serve. We’ve only just begun…