Protecting Living Donors
NKF also advocates for protections for living organ donors and to remove barriers to living donation. For example, we will continue to advocate against policies that allow insurance companies to deny, limit or charge higher premiums to organ donors for life, disability and long term care insurance – just because they chose to donate an organ to save someone's life. We will also advocate that living organ donors be granted time off through the Family and Medical Leave Act (FMLA) to recover from transplant surgery.
During March, the Living Donor Protection Act (S.511/H.R. 1224) was introduced in Congress by Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR), and Representatives Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA). This bill would provide these protections for living organ donors and help remove barriers to living donation. If you would like to support this legislation, please write your elected officials and ask them to sponsor this important legislation. To find more information on this bill, or to see if your elected officials are currently sponsoring this legislation, please click here for information.
Immunosuppressive Medication Legislation
While access to full insurance coverage for transplant recipients is the gold standard, there are those individuals under age 65 who cannot obtain insurance coverage through state programs or on the private market after they lose their Medicare coverage 36 months post-transplant. NKF advocates for Medicare to cover their immunosuppressive medications for the life of their kidney transplant.
There are 100,000 Americans waiting for a kidney transplant; but only about 19,000 will receive one this year. With a five-year average on the transplant list, more than 4,200 patients died waiting in 2016 alone. One-third of all transplants come from living organ donors who selflessly give the gift of life to family members, friends and other recipients they may not even know. However, the need for kidneys is outpacing the availability of organs, creating an organ supply crisis which the National Kidney Foundation (NKF) is working to solve. To learn more about the National Kidney Foundation's position on increasing organ donation and transplantation, please read this policy statement.
Latest Transplantation Access and Quality Updates
2/21/2020 — NKF submitted comments on Executive Order Section 7: Increasing Utilization of Available Organs. NKF supports CMS' efforts to hold OPOs to higher performance standards and to encourage the transplantation of more procured organs. Read the comments here
2/18/2020 — NKF submitted comments to HRSA on its proposal to expand the categories of expenses associated with living donation that can be reimbursed for by the National Living Donor Assistance Center (NLDAC). Read the comments here.
1/8/2020 — NKF submitted testimony regarding the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 5534) for the House Energy & Commerce Hearing on January 8th. Read our comments to the Committee and testimony submitted by NKF Board Member Dr. Matthew Cooper who testified at this hearing.
10/10/2019 — NKF submitted comments on proposed revisions to the PHS Guideline for Reducing HIV, Hepatitis B Virus (HBV), and Hepatitis C Virus (HCV) through Organ Transplantation. NKF supports removing the term "Increased Risk Donor (IRD)" to help mitigate the stigma associated with the use of these clinically valuable organs and reduce discards. Read NKF's comments to HHS here.
10/2/2019 — NKF provided our perspective on the Organ Procurement and Transplant Network (OPTN) proposal to eliminate DSAs and regions in the allocation of kidneys. NKF supports improved equity in allocation, but recommend a stepwise approach to implementation. Read NKF's comments.
9/30/2019 — The National Kidney Foundation (NKF) continues to raise concerns with recent revisions to transplant center interpretive guidance that create new barriers to willing organ donation. Read NKF's latest comments on the issue here.
9/27/2019 — The National Kidney Foundation (NKF) responded to a request for information from CMS on revisions to the Conditions for Coverage (CfCs) for Organ Procurement Organizations (OPOs). Read NKF's comments here.
9/16/2019 — NKF joined with the American Society of Nephrology (ASN) and Renal Physicians Association (RPA) to submit comments in support of the ESRD Treatment Choices (ETC) payment model. Read our joint letter here.
9/16/2019 — NKF submitted comments to CMMI on the ESRD Treatment Choices (ETC) mandatory payment model that voices our support for the goals of the model while recommending improvements to enhance its patient centricity. Read NKF's comments here.
7/29/19 — The National Kidney Foundation (NKF) sent comments to CMS Administrator Seema Verma expressing concern with changes to the interpretive guidance on the Conditions for Participation (CoP) for transplant centers that will create barriers for willing living donors. Read the comments here.
Read NFK's updated comments here
7/7/19 — The National Kidney Foundation (NKF) published a statement on reform of Organ Procurement Organization (OPO) metrics. Read the statement in the NKF newsroom here or here. NKF supports S. 2063, the Organ Procurement Optimization Act of 2019, introduced by Senator Todd Young on July 9, 2019. S. 2063 directs the Secretary of Health and Human Services (HHS) to publish a final rule establishing OPO metrics that are objective, verifiable, and not self-reported by OPOs.
3/5/19 — The National Kidney Foundation and partner organizations at the Transplant Roundtable sent the following letter to Congress requesting their support for the Living Donor Protection Act (S.511/H.R. 1224). Read the coalition letter here.
11/5/18 — The National Kidney Foundation submitted comments to CMS regarding proposed changes to the Conditions of Participation (CoP) and taking an important step towards reducing organ discards. We are pleased that they are in alignment with recommendations made from experts in transplantation and kidney recipients as part of the National Kidney Foundation’s May 2017 Kidney Discard Conference. Read the full comments (pdf)
10/03/18— The National Kidney Foundation submitted comments to the Organ Procurement and Transplantation Network (OPTN) and United Network for Organ Sharing (UNOS) regarding proposed policies related to kidney donation. Read the full comments (pdf).
3/2/18— The National Kidney Foundation submitted comments to CMS on several proposed changes to how the agency calculates payments to Medicare Advantage and Part D plans. These changes will impact CKD and ESRD patients access to these plans and the benefits they receive. Read the full comments (pdf).
7/25/16 — NKF submitted comments to the U.S. Department of Veterans Affairs on the proposed rule to permit full practice authority of all Veterans Affairs (VA) advanced practice registered nurses (APRNs) when they are acting within the scope of their VA employment. Read the full comments (pdf).
4/15/16 — NKF submitted testimony to the Senate and House Appropriations Committee’s Subcommittees on Labor, HHS, Education, and Related Agencies regarding the impact of Chronic Kidney Disease (CKD), and steps that can be taken by Congress to build upon the success of the existing programs at the National Institutes of Health, Centers for Disease Control, and Health Resources and Services Administration to improve early detection and treatment of the disease. Testimony to the Senate (.pdf) / House (.pdf)