Press release

American Kidney Fund's Kidney Action Summit Urges Members of Congress to Protect Living Organ Donors and Address Inequities in Kidney Care

Forty AKF Ambassadors, including patients, caregivers and living organ donors, will meet with their members of Congress during AKF's Kidney Action Summit to urge them to take action on issues important to people with kidney disease.

ROCKVILLE, Md. (May 4, 2022) – Forty American Kidney Fund (AKF) Ambassadors, including patients, caregivers and living organ donors, will meet with their members of Congress during AKF's Kidney Action Summit to urge them to take action on issues important to people with kidney disease, which affects 37 million Americans and millions more at risk.

Due to the ongoing COVID-19 pandemic, the AKF Ambassadors from 14 states will meet virtually with their Congressional offices to request support for two important bills before Congress that will address health disparities and improve the lives of Americans living with kidney disease:

  • Living Donor Protection Act of 2021 (H.R. 1255/S. 377). This bill would prohibit life, disability and long-term care insurance companies from discriminating against living organ donors by charging them higher premiums or denying them coverage altogether solely due to their status as an organ donor. It also would add living organ donation to the Family Medical Leave Act so that donors can receive job-protected leave to recover from surgery. This is a bipartisan bill that has been introduced in both the House and Senate.
  • Coordination, Accountability, Research and Equity (CARE) for All Kidneys Act of 2021 (H.R. 3893). This bill would create a national action plan to address kidney disease in historically underserved populations, including communities of color and rural communities. The bill would bring together key stakeholders, including the National Institutes of Health (NIH), the National Institute of Diabetes and Digestive and Kidney Diseases at NIH and the Centers for Disease Control and Prevention, to address health disparities in kidney disease, expand ongoing kidney disease research and address lower kidney transplantation rates in underserved communities. The CARE Act is a bipartisan piece of legislation that has been introduced in the House. AKF Ambassadors will be asking their senators to introduce the bill in that chamber.

"The Living Donor Protection Act and the CARE for All Kidneys Act are cornerstones of AKF's policy agenda that would have real, lifechanging impact on people living with and at-risk for kidney disease. AKF is calling on Congress to pass these bills to address the dire shortage of organs available for transplantation and combat inequities that lead to disproportionately higher rates of kidney failure in communities of color and rural communities," said LaVarne A. Burton, AKF President and CEO. "We thank all the AKF Ambassadors participating in our Kidney Action Summit, as well as those advocating for positive kidney disease legislation from home, for working with us to fight kidney disease on all fronts."

AKF has been working at both the state and federal levels to pass laws that will make it easier to become a living organ donor. As demonstrated in AKF's 2022 Living Donor Protection Report Card, progress has been made on the state level and AKF is hopeful that Congress will pass legislation this year that will give baseline protections to living donors nationwide.

People living in underserved and rural communities have long faced challenges accessing health insurance, primary care, preventive care and pre-dialysis nephrology care. The CARE for All Kidneys Act would improve the health care delivery system, making it more equitable, accessible and inclusive, and ensure high quality care for all people living with kidney disease.

AKF is grateful to its corporate members whose support makes the Kidney Action Summit possible: Akebia Therapeutics, Inc.; Alexion Pharmaceuticals, Inc.; Alnylam Pharmaceuticals, Inc.; Amgen; Apellis Pharmaceuticals, Inc.; Ardelyx, Inc.; Ascelia Pharma AB; AstraZeneca plc; Aurinia Pharmaceuticals Inc.; Biotechnology Innovation Organization; Boehringer Ingelheim/Lilly; Calliditas Therapeutics AB; Chinook Therapeutics, Inc.; Dicerna Pharmaceuticals, Inc.; GSK; Hansa BioPharma AB; Horizon Therapeutics plc; Omeros Corporation; Otsuka America Pharmaceutical, Inc.; Pharmaceutical Research and Manufacturers of America (PhRMA); Sanofi; Travere Therapeutics, Inc.; Tricida, Inc.; Verici Dx plc; Vertex Pharmaceuticals Inc. and Vifor Pharma Group.

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.

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