NKF Advocacy Efforts to Transform Kidney Care

Chronic kidney disease (CKD) is a public health priority that must be addressed.

On March 4th, 2019, the Secretary of the US Department of Health and Human Services (HHS), Alex Azar, spoke at the National Kidney Foundation’s Kidney Patient Summit where he laid out a vision of paying for kidney health and better outcomes for people with kidney disease and pushing for more patients to home dialysis. The Administration is expected to announce its plans to transform kidney care, which will include a new alternative payment model beginning at CKD stage 4 through end-stage renal disease (ESRD), with a focus on increasing the number of kidney transplants and the use of home dialysis. Additional details are expected to be announced later this summer.

HHS Secretary Alex Azar speaking at the NKF Kidney Patient Summit in March 2019

Parts of the plan appear on the Administration’s Spring Agenda and are already underway, such as removing financial disincentives to living organ donation, changing how organ procurement organizations are evaluated, ensuring accurate data collection on the number of organs available and transplants performed, and establishing requirements for third parties that provide financial assistance to help patients pay health for insurance premiums through an individual market health plan.

The NKF has been at the forefront of providing recommendations to Secretary Azar on key opportunities which the Administration could undertake to best improve awareness, prevention, and treatment of kidney disease:

  1. An alternative payment model should be developed, one that is focused on kidney health and improved outcomes for those with CKD. In meetings with Deputy Administrator and Director of the Center for Medicare and Medicaid Innovation (CMMI), Adam Boehler, and his team, NKF emphasized the need to focus first and foremost on preventing progression of CKD and ensuring that patients who do progress have smooth transitions of care, including being engaged early about their options for transplantation and home dialysis.

    L-R: NKF VP for Health Policy, Tonya Saffer, HHS Assistant Secretary for Health, Admiral Brett Giroir, Deputy Administrator and Director of the Center for Medicare and Medicaid Innovation, Adam Boehler, and HHS Secretary Alex Azar

  2. NKF’s recent KDOQI Home Dialysis Controversies conference included a presentation from Amy Bassano, Deputy Directory of CMMI, and agency staff were in attendance to hear recommendations from experts on how to increase the use of home dialysis in the US.
  3. NKF has been a long-time advocate to calling on policy makers to remove financial barriers to living donation in a responsible and ethical way. Specifically, we have asked for coverage of living donors’ expenses to ensure they do not bear any financial cost of being a living donor. This includes calling on the government to cover lost wages for donors who must take time away from their jobs to be an organ donor and to cover dependent care expenses that a donor might incur while taking time away to care for a child or other loved one. The Health Resources and Services Administration (HRSA) has launched a pilot on lost wages this summer; we believe this is a great start towards removing the financial barriers faced by living donors.
  4. We have also advocated that HRSA allocate additional dollars through the Division of Transplantation (DoT) to the National Living Donor Assistance Center (NLDAC) to raise the income limits to allow for more donors to be reimbursed and to include other categories of expenses. Currently, NLDAC provides some eligible donors with reimbursement for travel expenses related to the organ donation including transportation, lodging, and food.
  5. In a public-private partnership, we have called on the Centers for Medicare and Medicaid Services (CMS) and HRSA to develop a learning action network (LAN) of organ procurement organizations, transplant programs, nephrologists, and patients to identify best practices in maximizing the use of donated kidneys, including imperfect ones (those considered higher-risk to transplant). A recent paper published in Clinical Transplantation, Report of National Kidney Foundation Consensus Conference to Decrease Kidney Discards,” outlined specific steps towards solving the kidney utilization problem. The paper was a result of NKF’s Consensus Conference to Decrease Kidney Discards.
  6. Transplant recipients need to have access to all immunosuppressive drugs under Medicare Part B and D so that patients receive the treatment best tailored to them in order to reduce their risk of organ rejection while minimizing side effects. Recently, CMS agreed not to move forward with a proposal which would have removed key access protections for patients who receive Medicare Part D coverage for immunosuppressive drugs. In addition, HHS released two reports, one from the office of the Assistant Secretary for Planning and Evaluation and the other from the Office of the Actuary, showing cost savings to Medicare if Congress extends immunosuppressive coverage under Medicare Part B to cover transplant recipients’ drugs for the life of their kidney. This critical report will help advance NKF’s advocacy efforts on Capitol Hill to move forward the introduction and passage of a related bill.

Photo by Michael Judkins on Pexels.com

We look forward to hearing more details on what the Administration has planned.

July 10, 2019 Update: Read the NKF Press Release on the Advancing American Kidney Health Executive Order


To review more of NKF’s recommendations, please read our Kidney Policy Blueprint. To learn more or to get involved with NKF’s advocacy efforts, visit www.kidney.org/advocacy and follow @NKF_Advocacy.

– Post written by Tonya L. Saffer, MPH, Vice President, Health Policy for the NKF. Follow her @tonyasaffer.

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