Our 2022 Legislative Priorities
Several important pieces of legislation have been introduced in the current Congress, and we are actively working to enact these bills that would affect kidney patients and their access to life-sustaining health care.
The Coordination, Accountability, Research, and Equity (CARE) for All Kidneys Act of 2021 (H.R. 3893)
Introduced in June 2021 by Representatives Lisa Blunt Rochester (D-DE) and Brad Wenstrup (R-OH), this bipartisan legislation would implement interventions to better understand kidney disease in communities of color, rural communities, and other underserved communities nationwide. This goal would be accomplished by:
- Creating a national action plan to address kidney disease in underserved communities;
- Improving research, data collection and kidney transplant rates in those communities;
- Developing interventions and examining the environmental and occupational causes of kidney disease; and
- Conducting a study on treatment patterns associated with providing care in such communities.
Developed in close partnership with the American Kidney Fund, this bill is a crucial first step in addressing our nation's growing need to prevent and address kidney disease.
The Living Donor Protection Act of 2021 (H.R. 1255/S. 377)
Introduced by Representatives Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA) and Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR), the Living Donor Protection Act would remove many barriers to living organ donation by ensuring that living organ donors have Family Medical Leave Act (FMLA) protections and protection from discrimination by insurance carriers.
This bipartisan bill would codify a 2018 U.S. Department of Labor letter which stated that organ donation is protected under FMLA so that donors are able to take time off of work to donate their kidney and recover from surgery without fear of losing their job. It also prohibits insurers from:
- Declining or limiting coverage of a person under any life insurance, disability insurance or long-term care insurance policy due to the person's living donor status;
- Preventing a person from donating all or part of an organ as a condition of receiving a life insurance, disability insurance, or long-term care insurance policy; and
- Taking a person's status as a living organ donor into consideration when determining the premium amount.
Finally, the bill requires the Department of Health and Human Services to update its website, brochures, and other media regarding live donation and access to insurance for living donors. Check out the American Kidney Fund's State of the States: Living Donor Protection Report Card to see how well laws in your state encourage living organ donation and reduce barriers for living organ donors. If passed, this federal legislation would ensure that every state has a basic level of protection, so that a person's state of residence does not make it more difficult to be a living donor.
The Jack Reynolds Memorial Medigap Expansion Act of 2021 (H.R. 1676)
This bipartisan bill was introduced in March 2021 by Representatives Cindy Axne (D-IA) and Jaime Herrera Beutler (R-WA) and would require insurers nationwide to offer Medigap insurance coverage to all end-stage renal disease (ESRD) patients on Medicare regardless of their age or the state in which they live. There are currently 20 states that do not require Medigap insurers to offer plans to Medicare beneficiaries age 65 with ESRD. Medigap is a much-needed insurance option for ESRD patients as Medicare covers dialysis as an outpatient procedure, which means that it covers 80 percent of costs and the patient is responsible for the remaining 20 percent with no annual out-of-pocket limit.
For dialysis patients, this can be very expensive – approximately $10,000/year or more – unless those remaining costs are covered by a secondary insurance plan. Without access to Medigap coverage, these high costs can drive patients to bankruptcy – and additionally, they can be denied the life-saving procedure of a kidney transplant, as most transplant centers will not accept Medicare beneficiaries onto their transplant list without secondary insurance such as Medigap. If passed, this bill would provide a critical insurance option for ESRD patients and offer a lifeline to Medicare recipients who wish to be added to the kidney transplant list.
The Chronic Kidney Disease Improvement in Research and Treatment Act of 2021 (H.R. 4065/S. 1971)
This bipartisan bill, introduced by Representatives Terri Sewell (D-GA) and Vern Buchanan (R-FL) and Senators Ben Cardin (D-MD) and Roy Blunt(R-MO), aims to improve the lives of people with kidney disease through a variety of provisions. The bill would increase awareness to kidney disease by expanding the Medicare Kidney Disease Education (KDE) benefit and it would include kidney screening in the annual Medicare wellness benefit.
Additionally, this bill would also give dialysis patients under the age of 65 who are Medicare beneficiaries guaranteed access to Medigap plans and would include dialysis centers in network adequacy standards for Medicare Advantage plans, which determine how many types of providers must be in a plan's network. It would require the Secretary of Health and Human Services to submit a report to Congress on how to increase kidney transplants including barriers to living organ donation and ways to increase deceased donations. This comprehensive bill, if implemented, would be an important step towards improving care for kidney patients nationwide.
Where Americans live can affect their ability to give the gift of life
AKF's State of the States: 2023 Living Donor Protection Report Card evaluates each state and the District of Columbia on how well their existing laws encourage living organ donation and reduce barriers for living donors.