Advocating relentlessly on behalf of kidney patients the National Kidney Foundation (NKF) is proud of the accomplishments we have achieved in advancing policy solutions that benefit people with kidney disease. Our success would not be possible without you, so as we approach the beginning of a new year, we wanted to take the time to review our accomplishments, celebrate, and thank you for all your hard work.
Organ Donation and Transplantation Reforms
This year, NKF worked closely with Congress to introduce two key bills to make it easier for kidney patients to get and keep a kidney transplant.
The Living Donor Protection Act (H.R. 4616/S. 2584) protects living organ donors and removes barriers to donation including discrimination in obtaining life, disability or long-term care insurance and from job loss.
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139/S. 3487) extends Medicare coverage for immunosuppressive medications indefinitely and requires that group health plans maintain this coverage, ensuring kidney recipients have access to these lifesaving medications.
We will work closely with Congress in the new year to reintroduce and pass these bills.
White House Organ Summit
Kevin Longino, CEO of NKF and Dorry Segev, Associate Professor at Johns Hopkins’ School of Medicine
At the request of the Obama Administration, NKF CEO Kevin Longino and Board Member Dr. Matt Cooper, participated in the White House Organ Summit in June. The Administration and stakeholders announced a new set of actions that will improve outcomes for individuals waiting for organ transplants and improve support for living donors. During the Summit, the National Kidney Foundation announced a new collaboration with Johns Hopkins University and Novartis to nationally launch the Live Donor Champion Program. The Live Donor Champion Program aims to overcome common barriers to finding a living kidney donor. It will teach people how to use their own personal connections and social networks to raise awareness about the need for kidney donors; and help to identify potential live donor candidates for a family member, friend or themselves.
21st Century Cures Act
On Tuesday, December 13th the President signed into law the 21st Century Cures Act (H.R. 34). This legislation includes a provision that allows dialysis patients the option to enroll in Medicare Advantage plans. Patients will be able to access these plans effective on January 1st, 2021, this timing will allow us the opportunity to work with the new Administration to improve Medicare Advantage plans to better meet the unique health care coverage needs of end-stage renal disease (ESRD) patients. Additionally, the 21st Century Cures Act will enable patient self-management of chronic disease through telehealth and health information technologies, and works to address racial health disparities.
This legislation will also invest $4.8 billion in the National Institutes of Health (NIH) for research on drug addiction treatment, chronic disease research, and mental health treatment.
New FDA Kidney-Friendly Food Labeling
On May 20, 2016, the FDA announced its final changes to the Nutrition Facts Label found on packaged foods. The new labeling requires food manufacturers to list the amounts of potassium and calcium on the nutrition label beginning July 28, 2018. This is not only great news for the general public looking to make healthier food choices, but a great win for kidney patients who often find it challenging to know how much potassium and calcium (minerals that kidney patients often need to limit) are in the foods they buy.
NKF has a long history of advocating for clearer food labeling. This year our efforts have included testifying at an FDA hearing on the topic, submitting comments in response to the proposal, teaming up on the issue with the American Academy of Nutrition and Dietetics, and building a kidney community coalition to support these changes.
Improvements in the Medicare Dialysis Facility Star Ratings Program
Carrying on our efforts from 2015, NKF was successful in working with the Centers for Medicare & Medicaid Services (CMS) to change its Dialysis Facility Compare Star Ratings Program to make it more in line with how kidney patients want to receive information about the quality of care provided in dialysis facilities located where they live and travel. Patients have commented that they prefer to see star ratings assigned based on how well the facility delivered care rather than having stars assigned to facilities based on a curve – like high school students whose test scores are based on how well they did in comparison to their peers. The new way CMS will assign star ratings better ensures that facilities that have only insignificant differences in performance compared to other facilities will still receive the star rating they deserve. CMS has also followed another recommendation made by NKF to include patient reported measures into the star ratings – these new measures are expected to be added to the program in 2018 and will be based on patient responses to a large national survey.
In Idaho, NKF met with success when the Department of Insurance released reforms to Medigap insurance which will prevent Medigap issuers from denying or limiting Medicare supplemental policies, due to health status, conditions, or claims experience. It will cap the price for these policies at no-more-than 150% of policies for those over age 65, until the policyholder becomes 65. The rule will also allow those who successfully appeal their denial of Medicare Part B benefits to receive the full six-month grace period to enroll in Medigap. The rule is pending approval by the Idaho legislature in 2017 and is expected to pass and become effective this Spring. Idaho will become the 28th state to offer Medigap plans to ESRD patients.
NKF also supported H.R. 6265, the Medigap Consumer Protection Act, which would, nationally, end the discriminatory treatment of Medicare beneficiaries under age 65 who have been denied access to Medigap policies based on preexisting conditions. The Medigap Consumer Protection Act would help all Medicare beneficiaries with end-stage renal disease (ESRD) or who are disabled gain access to the supplemental coverage they need.
Senate Finance Committee’s Chronic Care Legislation
On January 29th, NKF released comments on the committee’s chronic care policy options white paper. The working group, chaired by Senator Isakson (GA) and Senator Warner (VA), made numerous proposals to improve the care of Medicare beneficiaries with chronic conditions and to lower healthcare costs. This proposal was later introduced in the Senate as S. 3504, the CHRONIC Care Act.
NKF was pleased with proposals to improve the care of individuals with ESRD who are on dialysis, and urged them to include further reforms to improve care of individuals with chronic kidney disease. Among our key priorities included in the legislation were: expanded access for patients to receive healthcare services using telehealth, including allowing home dialysis patients to use telehealth technology to “visit” with their nephrology practitioners in their own homes or at a nearby dialysis facility once a month, permanently authorizing Medicare Chronic Special Needs Plans, and permitting Medicare Advantage plans to tailor benefits offered to better meet the needs of people with chronic conditions.
Increased Funding for Kidney Disease Research and Transplantation
During 2016, NKF continued in its push to increase appropriations funding for kidney disease programs. Of particular importance were the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), HRSA Division of Transplantation (DoT), and the CDC’s CKD program. NKF was able to assist in increasing or keeping funding stable for these programs in proposed FY’17 appropriations legislation. For now, funding was kept at FY’16 levels until April 28th due to Congress’ passage of a Continuing Resolution.
The 3rd Annual Kidney Patient Summit
On March 8th, 100 patient advocates from NKF and other kidney patient organizations met with 180 of their legislators and health care policy staff on Capitol Hill to discuss important strategies for better kidney care in the U.S. In addition, more than 4,125 people took action to support this effort from home by sending letters to Congress, 180,000 people read tweets about the summit, and 39,000 people read posts on Facebook. A direct result of this summit: nearly 200 lawmakers co-signed a Congressional “dear colleague” letter in support of increased NIDDK funding and 22 Representatives signed onto the Living Donor Protection Act in April.
Patient-Centered Outcomes Research Stakeholders’ Conference
NKF secured funding to hold the first ever kidney Patient-Centered Outcomes Research Stakeholders’ Conference. The conference will bring together kidney patients, caregivers, stakeholders and academics to identify patient-driven national research priorities. The conference co-chairs, Kidney Advocacy Committee liaison, Derek Forfang, and member of NKF’s Council of Nephrology Social Workers (CNSW), Teri Browne, PhD, MSW, NSW-C, will start this necessary conversation about the importance of involving kidney disease patients and caregivers as active members in the research process. The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award. The Conference will be held in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando Florida during April 2017. Learn more about the conference by clicking here.
Kidney Advocacy Committee (KAC) Expansion
Since its founding a year and half ago, KAC has grown exponentially in both size and action. In the last year, it has expanded by 250% to 158 patient advocates. KAC members have served on numerous panels held by federal and state regulatory agencies, such as the Food and Drug Administration’s (FDA) panel on the Patient Focused Drug Development Initiative. Members have been nominated to serve on the United Network for Organ Sharing’s (UNOS) Region 9 Minority Affairs
Kevin Longino and Leilah Sampson at FDA
Health Resources and Service Administration’s (HRSA) Advisory Committee on Organ Transplantation, and the Department of Defense’s Peer Review Panel on FSGS. They have been featured in major publications, such as Ebony, and numerous hometown newspapers. They also held approximately 250 meetings with their legislators in Washington, D.C. and in their home states.
Since 2015, KAC has:
- Strengthened NKF’s visibility as a patient-centered organization by becoming patient spokespersons,
building relationships with local and national media outlets, and
Rep. Yoder (R-KS) with KAC liaisons David and Jeannie Seldner
representing the patient voice at numerous external conferences and meetings within the kidney health and broader medical community
- Developed and fortified NKF partnerships with Members of Congress to make kidney care a national priority and advance NKF’s public policy priorities
- Propelled forward NKF’s strategic plan around awareness, prevention and treatment of kidney disease by participating in NKF events and programs and providing input on NKF’s patient and public materials.
Our goal during the next Congress is to expand KAC to include advocates in every Congressional district! To learn more about KAC or to become involved, click on this link.
Advocacy Communications & Outreach Success
NKF’s advocacy outreach had a landmark year. In 2016, advocacy emails reached an average of 93,000 people compared to 68,300 in 2015. Advocates sent 19,600 emails to Congress, compared to 4,900 emails in 2015 championing many needed improvements in kidney care. On twitter our reach expanded from 121,000 in 2015 to 234,000 this year. Our Facebook messages reached more than 675,000 people and the Advocacy in Action blog was read by 20,800 unique viewers.
While we have made great strides this year in passing policy changes that will improve the care and lives of kidney patients, we will continue to face many existing and new challenges next year. However, we won’t be successful without your support. Please visit our Advocacy Action Center and become an advocate to receive important alerts on contacting your Members of Congress about policy changes needed to prevent, detect and treat CKD early, to improve access to high quality kidney care and medications, and to increase access to kidney transplants.
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 2017.
Stay tuned next week for a reveal of our full list of 2017 top Advocacy priorities!