Advocacy | KFWNY

Public Advocacy

The Kidney Foundation of WNY advocates for the needs and interests of people with kidney disease - including those on dialysis and transplant patients - at the local, state and national level.

Advocacy Partners

The Kidney Foundation of WNY is affiliated with Donate Life New York State, a non-profit organization comprised of organ and tissue recovery organizations, health professionals and individuals whose lives have been affected by donation. Donate Life NYS serves as the statewide liaison organization to Donate Life America. The Kidney Foundation collaborates with Donate Life NYS on multiple advocacy efforts, especially those pertaining to the New York State Donate Life Registry, organ donation and transplantation.

An advisory committee of stakeholders from the kidney patient, transplant recipient, living donor and medical professional communities provides guidance to the Kidney Foundation of WNY on advocacy and policy positions.

National Legislation

Living Donor Protection Act (H.R. 2923 & S. 1384)

First proposed in 2012, the bipartisan Living Donor Protection Act aims to remove barriers faced by people considering living organ donation.

As drafted, the bill would:

Prevent life insurance policies, disability insurance policies, and long-term care insurance policies from limiting coverage, increasing costs of denying coverage to people based on their status as living organ donors alone.
Amend the federal Family and Medical Leave Act (FMLA) to clearly include recovery from organ donation among the conditions eligible for unpaid, job-protected medical leave from work.
Instruct the Secretary of Health and Human Services to update materials related to living organ donation in order to educate the public on the benefits and risks of living organ donation and its impact on access to insurance.

The Renal Support Network has an easy-to-use form for people wishing to write to their representatives in Congress, as does the National Kidney Foundation. The American Society of Transplantation also has a form for its members, as does the Renal Physicians Association.

Track the act's progress in the House of Representatives and in the Senate.

Restore Protections for Dialysis Patients Act (H.R. 6860 & S. 5018)

The U.S. Supreme Court’s 2022 decision in the case of Marietta v. DaVita struck down provisions of the Medicare Secondary Payer Act. This decision allows insurance companies to limit coverage of kidney care services, including dialysis. The Restore Protections for Dialysis Patients Act (H.R. 6860), introduced in December 2023, is aimed at restoring the Medicare Secondary Payer Act protections for ESRD patients by ensuring that private health plans do not discriminate against such patients or adversely classify dialysis as compared to other covered medical services.

The American Kidney Fund has a template for emailing members of Congress. Dialysis Patient Citizens has a template for contacting Congressional representatives. Nephrology nurses can submit a letter through ANNA.

Track the act’s progress in the House and in the Senate.