By Troy Zimmerman, Vice President of Government Relations
2017 was a fantastic year for kidney patients as progress was made towards increasing awareness of chronic kidney disease (CKD) and introducing key legislative priorities. The kidney patient community banded together to protect patients at the state and federal level. Much of this success by National Kidney Foundation (NKF) was due to the work done by advocates like you, working on behalf of kidney patients. Thank you for all your efforts.
Our accomplishments include the following:
On March 1st, 2017, the Living Donor Protection Act (H.R. 1270) was introduced to protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long-term care insurance to living donors, and from charging higher premiums. It will also help to protect the jobs of living donors while they recover from organ donation. We have been successful this year in adding 54 co-sponsors in the House of Representatives, a quarter more than in the last two-year Congress. We are in discussions with several Senators to introduce a companion bill in the Senate and will continue to focus our efforts on building additional congressional support in 2018. Help us by telling your Senators that you want them to introduce the Living Donor Protection Act.
- Legislation that NKF advocated for to promote the early detection and treatment of Chronic Kidney Disease (CKD), H.R. 3867, was introduced in September. This legislation seeks to demonstrate early detection of CKD, combined with effective and coordinated care that engages patients in the decision-making process, can improve clinical results and lower healthcare spending. The voluntary practitioner-led Medicare pilot program will tie Medicare payment to improvements in the early detection of CKD and the care patients receive. This bill will promote stronger collaboration between primary care and nephrology practitioners to preserve kidney health and provide them with the resources they need to make measurable improvements in the care of people with CKD. We are in discussions with two Senators to introduce a companion bill in the Senate and will continue to focus our efforts on building additional congressional support in 2018. Write to your Senators to tell them you want them to become an introductory sponsor.
- To complement our legislative efforts, NKF developed and recommended a novel model, CKDintercept: Comprehensive Chronic Kidney Disease Care Model, for improving patient-focused kidney care that is designed to improve testing for CKD in those at risk, identify it early, improve care coordination between primary care practitioners and nephrology practitioners, and ease care transitions for those that progress to advanced CKD and end-stage renal disease (ESRD). Our goals for this model are to: make sure that people know their risk of CKD, that people with it know they have it, empower primary care practitioners to work with patients to delay progression and receive timely referrals to nephrologists, and for patients who do progress to ESRD to have the opportunity to make informed decisions about their options for treatment including transplant, home dialysis or supportive care.
Kidney Donor Day Proclamations, promoted by NKF’s Kidney Advocacy Committee advocates, have been approved by Governors and legislatures in Arizona, Florida, Indiana, Texas, and Nebraska. These state government issued proclamations are one way that NKF’s advocates seek to honor and celebrate those who give the “gift of life.” They are also being pursued and expected to be signed by Governors in Massachusetts, Minnesota, Pennsylvania, South Carolina, and Wisconsin in the coming weeks.
- The Kidney Advocacy Committee consists of more than 200 advocates who engage with policy makers and promote kidney awareness, education and patient engagement in healthcare delivery and development of new therapies. KAC members also serve on panels and in conferences hosted by various government agencies to ensure that the patient voice is included in decisions impacting kidney patients. For example, on December 6th, two KAC members participated in a Department of Defense consumer review panel to help guide grant proposal funding in kidney disease research.
- The National Kidney Foundation led the way in Pennsylvania, defending state funding for the Chronic Renal Disease Program (CRDP), generating 1,750 letters, tweets and calls by kidney patients, families and friends, and healthcare practitioners to their state legislators. The CRDP is a vital program that provides reimbursement for transportation to dialysis and prescription drug coverage – including post-transplant immunosuppressant drug coverage – and medical coverage as a payor of last resort. The Governor and legislature sought to cut funding by more than 80%, or $6.6 million. The efforts by NKF advocates limited reductions to this program to only 12%, or just $1 million, at a time when the state budget overall was reduced by nearly $2 billion.
- Leading up to World Kidney Day, more than 125 advocates and six kidney organizations, hosted by NKF, participated in the 4th annual Kidney Patient Summit and met with their Senators and Representatives to educate them on CKD and priority policy issues that will improve the lives of kidney patients. Advocates from around the country supported this effort by sending more than 1,500 emails, tweets, and videos of themselves to members of Congress. NKF also hosted a press conference on living organ donation that was attended by approximately 150 people, including three Congressional speakers, Rep. Nadler (D-NY), Rep. Herrera Beutler (R-WA) and her family, and Rep. Guthrie (R-KY).
- NKF advocates sent 24,000 letters and tweets to Congress on our legislative priorities throughout 2017. These included messages supporting the Living Donor Protection Act (H.R. 1270), legislation to promote early detection and treatment of CKD (H.R. 3867), supporting federal funding for kidney disease research and programs, and preserving prohibition of discrimination against people with pre-existing health conditions in health insurance.
- NKF began collaborating with the U.S. Department of Health and Human Services Million Hearts Initiative to integrate evidence-based best practices for improving early detection and treatment of CKD into efforts to improve hypertension treatment. The goal of this program is to decrease cardiovascular events like heart attack and stroke.
- NKF also collaborated with the Centers for Medicare and Medicaid Services (CMS) to develop a quality improvement special innovation project to improve earlier detection and treatment of CKD. CMS approved and funded CKD projects to two CMS Quality Improvement Network-Quality Improvement Organizations, TMF Health Quality Institute – covering Arkansas, Missouri, Oklahoma and Texas – and IPRO – covering New York. NKF is closely working with TMF on the project, which leverages our expertise in evidence-based care and utilizes our CKDinform continuing medical education platform to train primary care practitioners on how to identify and effectively manage CKD earlier. The program also directly reaches people with diabetes to educate them on their risk of CKD.
- We received four (4) new contracts/awards from government agencies/or government funded entities in which we are leading or collaborating on additional projects to improve kidney care across all stages these included:
- In November, NKF convened the 2017 Home Dialysis Controversies Conference in which patients, clinicians, caregivers, researchers, payers and healthcare industry representatives discussed who benefits from home dialysis and why; what can be done to help dialysis patients realize and achieve their modality preferences; and where evidence is lacking on the benefits, harms and needs of patients regarding home dialysis modality choices. Attendees explored barriers to beginning and continuing home dialysis, identified gaps in research, and proposed potential solutions. In the coming months, stakeholders will form working groups to expand the suggested research ideas into testable approaches to improve access to and continuity of home dialysis—with an emphasis on patient involvement throughout the research process. They will present these topics and designs at a second Home Dialysis Controversies Conference in Fall 2018.
While we have made great strides this year in promoting kidney disease education in Congress, federal agencies and state capitals, we continue to face many challenges in getting our bills enacted into law. However, with your continued outreach to your Members of Congress as constituents and voters – we will be further along in overcoming these challenges. Please visit our Advocacy Action Center and become an advocate to receive important alerts and to contact your legislators about improving CKD policy.
NKF primarily relies on public donations, including the people we serve—patients, family members, friends and others to accomplish our mission. Please consider donating to help support our advocacy initiatives and other important work in 2018.
Let’s make 2018 even more successful on Capitol Hill through action, education and accelerating change to benefit all those affected by kidney disease.