Blog post
Using the Fourth to advocate for the kidney community: the 2022 Virtual Kidney Action Summit
On May 4 - or May the Fourth, widely-known as Star Wars Day - AKF hosted its annual Kidney Action Summit, connecting Ambassadors and their elected officials to discuss important legislation for the kidney community.
A short time ago, in Zoom meetings across the country …
The American Kidney Fund (AKF) hosted its Kidney Action Summit!
During our annual Kidney Action Summit, AKF connects its Ambassadors with lawmakers on Capitol Hill to advocate for legislation that will improve the lives of those living with kidney disease. On May 4, we hosted our third virtual summit, with 36 AKF Ambassadors from 15 states meeting with their senators and representatives' offices in 48 virtual meetings, including four meetings with members of Congress in attendance.
Our AKF Ambassadors are people with kidney disease, living donors, caregivers and others who have been touched by kidney disease. For their meetings, they were partnered with AKF staff members, who provided background on AKF and our programs and services. Ambassadors then shared their personal experiences with kidney disease to help their elected officials better understand the impact of kidney disease on people's lives. Finally, our teams urged congressional offices to support two critical bills: the Living Donor Protection Act of 2021 (H.R. 1255/S. 377) and the CARE for All Kidneys Act of 2021 (H.R. 3893).
The 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 (FMLA) protections to take time off from work to donate their kidney and recover from surgery, without risking the loss of their job. This bill would also prohibit life, disability and long-term care insurers from discriminating against living organ donors by denying or limiting them coverage or charging them higher premiums solely due to their status as an organ donor.
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.
The CARE for All Kidneys Act of 2021 (H.R. 3893)
The Coordination, Accountability, Research and Equity (CARE) for All Kidneys Act of 2021 is a bipartisan bill that seeks to address the growing trajectory of kidney disease in the U.S., particularly in underserved communities, such as rural communities and communities of color. AKF worked closely with the bill sponsors, Rep. Lisa Blunt Rochester (D-DE) and Rep. Brad Wenstrup (R-OH), on this important bill that would implement interventions to better understand and manage kidney disease in communities of color, rural communities and other underserved communities nationwide.
To achieve this goal, the CARE for All Kidneys Act would create a national action plan to:
- Address kidney disease in underserved communities
- Improve research, data collection and kidney transplant rates in underserved communities
- Develop interventions and an understanding of the environment and occupational causes of kidney disease
- Conduct a study on the treatment patterns associated with providing care and treatment for kidney failure in all underserved populations
This bill would provide a critical first step in tackling our nation's growing need to address and prevent kidney disease.
This year, AKF mailed Ambassadors who participated in the Summit some out-of-this-galaxy swag. The Summit took place on May 4 – or May the Fourth, widely known as Star Wars Day. As a nod to the timing of our event, Ambassadors received AKF-branded light sabers and showed their fight on behalf of all those with kidney disease on social media. Here are examples from AKF Ambassadors Steven W., Anel, Artise and LaTonya.
The American Kidney Fund's Kidney Action Summit was made possible by generous support from AKF's Corporate Members:
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., PhRMA, Sanofi, Travere Therapeutics Inc., Tricida, Inc., Verici Dx plc, Vertex Pharmaceuticals, Inc. and Vifor Pharma Group
