Kidney Month is a time for raising awareness among the public and policymakers about the important issues that matter to people with kidney disease. Earlier this month, the American Kidney Fund (AKF) held its Kidney Action Summit, a day of advocacy to connect AKF Ambassadors with their lawmakers and staff on Capitol Hill. This was AKF's second digital Kidney Action Summit, and it took place almost exactly a year after the COVID-19 pandemic limited everyone's ability to advocate for important legislation in person. AKF used Zoom to successfully and safely connect 35 AKF Ambassadors from 16 states around the country with Capitol Hill offices.
The Ambassadors who joined us for this year's Kidney Action Summit partnered with AKF staff to conduct a total of 50 meetings with Congressional offices. Our Ambassadors told the Congressional offices about their personal experiences with kidney disease, helping these policymakers gain a better understanding of the challenges faced by the more than 785,000 people in the United States who have kidney failure and rely on dialysis or transplantation to survive.
Ambassadors and AKF staff discussed two pieces of legislation that are critically important to people living with kidney disease, living organ donors and their families:
Living Donor Protection Act of 2021 (H.R. 1255/S. 377)
The Living Donor Protection Act of 2021 is bipartisan, bicameral (meaning it has been introduced in both the Senate and House of Representatives) legislation that provides critical protections to living organ donors. This bill would ensure that living donors have Family Medical Leave Act protections so they can take time off from work to donate their kidney and recover from surgery, without risking the loss of their job. This bill would also protect living donors from discrimination by life, disability and long-term care insurance carriers, prohibiting insurers from declining or limiting coverage for living donors and preventing them from using a person's status as a living organ donor to determine their premium amount.
Living donor protections currently vary from state to state, so this federal legislation would create a baseline of protections across the country if it were to become law. This legislation has been introduced in previous years, and we are hopeful that this is the year it will be signed into law. If enacted, it would result in all 50 states having a grade of C or better on AKF's State of the States: Living Donor Protection Report Card.
Jack Reynolds Memorial Medigap Expansion Act of 2021 (H.R. 1676)
The Jack Reynolds Memorial Medigap Expansion Act of 2021 is bipartisan legislation that would require insurers nationwide to offer Medigap (Medicare supplemental insurance) plans to people with kidney failure under the age of 65, who are on Medicare due to having kidney failure. There are currently 20 states in which Medigap providers are not required to offer Medigap plans to people with kidney failure under the age of 65. These Medicare beneficiaries who cannot purchase Medigap plans are left with high out-of-pocket costs of about $10,000 per year.
Access to Medigap supplemental insurance is also required for Medicare beneficiaries who wish to be added to the kidney transplant list, as Medicare alone is not considered full insurance coverage by most transplant centers across the nation. Without access to supplemental insurance, people with kidney failure who are under 65 cannot qualify financially for a kidney transplant.
Meet some of our Ambassadors:
The American Kidney Fund's Kidney Action Summit was made possible by generous support from AKF's Corporate Members:
Alexion Pharmaceuticals, Inc. Alnylam Pharmaceuticals, Inc. Amgen Apellis Pharmaceuticals, Inc. Ardelyx, Inc. AstraZeneca plc Aurinia Pharmaceuticals Inc. Biotechnology Innovation Organization Chinook Therapeutics, Inc. Dicerna Pharmaceuticals, Inc. GSK Horizon Therapeutics plc Mallinckrodt plc Otsuka America Pharmaceutical, Inc. Pharmaceutical Research and Manufacturers of America (PhRMA) Quest Diagnostics, Inc. Sanofi Genzyme Vifor Pharma Group