Our 2023 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.

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The Living Donor Protection Act of 2023 (H.R.2923 /S.1384)

Introduced by Representatives Jerrold Nadler (D-NY) and Greg Murphy (R-NC) 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.

Chronic Kidney Disease in Research and Treatment Act (H.R. 5027)

Introduced by Carol Miller (WV-1) (H.R. 5027) aims to improve the lives of those with kidney disease. The legislation would increase awareness of kidney disease and expand preventative services.

Specifically, among other provisions, the bill would:

1) Include Kidney Screening in the Annual Medicare Wellness Benefit. Many people with kidney disease do not know that they have it. Including a screening in the yearly wellness checks for Medicare beneficiaries will provide patients and their doctors with a report of kidney function. It will allow doctors to track if kidney function decreases over time and provide early interventions.

2) Expand the Medicare Kidney Disease Education (KDE) benefit. The KDE benefit is a service covered by Medicare. At stage four of chronic kidney disease (CKD), Medicare recipients can meet with a doctor to learn about CKD and how to improve health to delay dialysis. It can also include information on nutrition, the importance of exercise, management of other chronic diseases like heart disease or diabetes, and treatment modality options such as in-center hemodialysis, home dialysis, and kidney transplant. The bill would expand the benefit to allow dialysis facilities to provide this information. It would also expand the number of health care providers reimbursed for this information to include physician assistants and nurse practitioners. The bill would also allow patients with stage 5 CKD to access the KDE benefit.

3) Expand Access to Medigap plans. Medicare beneficiaries under 65 are not guaranteed access to a Medicare supplemental plan called Medigap. Medicare Part B pays 80% of dialysis costs, and the patient must pay 20% with no out-of-pocket cap. Medigap plans cover the portion that Medicare does not cover. The state regulates Medigap for people under the age of 65. Eighteen states do not require Medigap insurers to offer Medigap to ESRD patients under age 65. The bill would require all ESRD patients with Medicare to be guaranteed access to a Medigap plan regardless of their state. The provision would ensure that more dialysis patients have the full health insurance coverage they need.

4) Study on How to Increase Kidney Transplants. The bill would require the Secretary of Health and Human Services (HHS) to submit a report to Congress on how to increase kidney transplants. The study would report on possible economic disincentives in the Medicare program, practices used by states with higher than average transplant rates, barriers to increasing living donation, and deceased donations.

5) Expanding TDAPA to Medicare Advantage (MA) Plans. Currently, the Transitional Drug Add-On Payment Adjustment (TDAPA) and Transitional Add-on Payment Adjustment for New and Innovative Equipment and Supplies (TPNIES) do not apply to drugs and devices taken by dialysis patients enrolled in MA. The bill would provide increased payment adjustments to providers or facilities when the drugs and devices covered under TDAPA and TPNIES increase the cost.

6) Increasing Payments to Providers to Account for Increased Labor Costs. The bill would require the Secretary of Health and Human Services (HHS) to calculate accurate costs when deciding on the annual payment increase for kidney care providers.

AKF Ambassador - Alysia Yamasaki

AKF allowed me to focus on my health and prioritize my new kidney. I didn't have to worry about how I was going to pay for my insurance. They had my back when I needed it.

— Alysia Yamasaki

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AKF Living Donor Protection Report Card

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.