AKF Ambassadors advocate for critical legislation during Kidney Action Summit
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 end-stage renal disease (ESRD, or kidney failure) patients 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 [TR1] insurance, people with kidney failure who are under 65 cannot qualify financially for a kidney transplant.
Meet some of our Ambassadors:
Learn more about our Kidney Action Summit from highlights of the day from our Ambassadors and AKF staff:
Thank you Senator @SenToddYoung for meeting with AKF Ambassadors Jim Meyers @kidneystories, Curtis Warfield @chwcbak and our Government Affairs team to discuss living #organdonor protection and the importance of Medigap expansions for kidney patients under 65. #KidneyAction pic.twitter.com/KIpbXfHstJ— AKF Advocacy (@AKF_Advocacy) March 17, 2021
Thank you Sydney from @repmarkpocan office for your time this morning discussing important Kidney legislation HR 1255 & HR 1676 @AKF_Advocacy #KidneyDisease Fhttps://akf.constituentvoice.net/meeting/detail/95444 pic.twitter.com/JWK8R2PTWK— Mary Baliker (@MBaliker) March 17, 2021
So proud of this group today who joined me in talking with our state’s senators about The Living Donor Protection Act ♻️ Thank you to Julia with @RonJohnsonWI and Brian with @tammybaldwin for hearing our stories! #kidneywarrior #kidneyaction #organdonor @KidneyFund pic.twitter.com/bvHvGkpj1f— Elizabeth Kay (@ElizabethKayFM) March 17, 2021
Thank you @repkevinhern for meeting with AKF team members and Ambassador Theresa Caldron on protections for kidney patients and living #organdonors. We hope the stories from our community inspire continued partnership in tackling these issues. #KidneyAction pic.twitter.com/MUXsRbjyCV— AKF Advocacy (@AKF_Advocacy) March 17, 2021
Thanking our beloved #Georgia Senator Raphael Warnock and Staffer @SenatorWarnock for allowing me to share The Financial & Social impacts of #kidney failure/#KidneyDisease (Health & Economic Disparities) #Medigap coverage #LivingDonorProtectionAct @AKF_Advocacy #KidneyMonth pic.twitter.com/sOL20HoklK— T. Y. Walker (@TYWalke65277180) March 17, 2021
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.
Apellis Pharmaceuticals, Inc.
Aurinia Pharmaceuticals Inc.
Biotechnology Innovation Organization
Chinook Therapeutics, Inc.
Dicerna Pharmaceuticals, Inc.
Horizon Therapeutics plc
Otsuka America Pharmaceutical, Inc.
Pharmaceutical Research and Manufacturers of America (PhRMA)
Quest Diagnostics, Inc.
Vifor Pharma Group