What's happening in the states: March 2021

Welcome to our What's happening in the states blog series, where we provide monthly legislative updates on what the American Kidney Fund (AKF) is working on across the country to improve the lives of those living with kidney disease and to protect living organ donors.

Almost all states have started their 2021 legislative sessions. AKF is currently working on 121 bills in 43 states, and thanks to our dedicated Ambassadors, we are already seeing great progress! In fact, New Jersey's Living Donor Protection Act has already passed the legislature and is awaiting the governor's signature.

Kentucky and Washington

Kentucky's Living Donor Protection Act bill passed the House Banking and Insurance Committee and full House unanimously! Lawmakers were impressed by how much positive feedback they received from AKF Ambassadors, one of whom testified with us on the importance of this legislation.

In Washington, the Living Donor Protection Act bill passed the full Senate and now goes to the House.

These bills would prohibit insurance companies from discriminating against people based on their status as a living organ donor. Right now, only 14 states have anti-insurance discrimination laws to prohibit life, disability and long-term care insurers from discriminating against living organ donors by charging them higher premiums or denying them coverage altogether. By preventing discriminatory insurance practices, this bill would remove barriers to living donation and increase the supply of much needed organs available for transplantation.

There are more than 93,000 Americans on the kidney transplant waiting list right now. In 2020, only 23,644 people were able to get a kidney transplant. Of those transplants, just 5,234 came from living donors. In Kentucky, just 39 of 216 kidney transplants came from living donors, and in Washington, just 76 of 440 kidney transplants came from living donors. We need to do whatever we can to increase the organ supply, encourage more living donations and remove burdens for living donors. Kentucky and Washington both currently only have one law on the books to protect living organ donors. If their bills were to pass, it would bump up both of their grades on our State of the States: Living Donor Protection Report Card from a D to a C.

Rhode Island

Lawmakers in Rhode Island are taking big steps this legislative session to try to protect people living with kidney failure. They introduced a bill that would require health insurers that offer Medicare Supplement insurance (also known as Medigap) to also offer those plans to Medicare patients under the age of 65, who are eligible for Medicare due to their kidney failure status.

The bill had its first hearing at the end of the month. It was an emotional hearing, as an AKF advocate, several bill sponsors and committee members shared their personal stories with kidney disease, dialysis and issues with health insurance.

Most people with kidney failure become eligible for Medicare regardless of age, but private Medigap insurance is often needed to afford deductibles and copays, since Medicare Part B only covers 80% of medical care and does not have a cap on out-of-pocket expenses. Those with Medicare are also required to have supplemental insurance in order to be added to the kidney transplant waiting list, as Medicare alone is not considered full coverage.

People with kidney failure have complex health care needs and face high out-of-pocket costs, which can total to about $10,000 for those on Medicare. This bill would ensure that all Medicare-eligible people with kidney failure have access to Medigap coverage.

Maryland

As we mentioned last month, the Maryland legislature is continuing to prioritize legislation that supports living organ donors and protects patients from health insurance companies. The bill (HB10 in the House and SB48 in the Senate) to increase income tax credits from $7,500 to $10,000 for living organ donor expenses passed the full Senate. The bill expands the definition of "qualified expenses" for this tax credit to allow living organ donors to include costs for childcare, elder care and medicines. These new changes could mean the difference between someone choosing to donate an organ or not. Maryland currently has a B grade on our Report Card, making it a leader in the nation when it comes to protections for living organ donors. This bill will strengthen their existing laws.

The second bill we are actively supporting in Maryland requires all payments made by patients — either directly by the patient, or on their behalf — to count toward the patient's insurance deductible or out-of-pocket maximum (HB167 in the House and SB290 in the Senate). This bill is in response to an emerging change in insurance plans called copay accumulator policies. The Senate had a hearing in February on SB290 and had resounding support from the bill's sponsor, Senator Benson (District 24). Learn more in our January post.

Oregon

Like Maryland, there is a copay accumulator ban bill in Oregon (SB 560) that had a hearing in the Senate Health Care Committee. These copay accumulator policies prevent copayments made by patients using manufacturer copay assistance or copay coupons from being applied toward their annual deductible or out-of-pocket limit. Many people living with a chronic condition, such as kidney disease, receive and rely on copay assistance, which can help cover as much as 20-50% of the cost of patients' medicine. That assistance is needed now more than ever, as the pandemic has increased the financial strain that high-cost treatments put on patients and their families. Requiring health insurance carriers to count all copayments through this bill will protect patients from high out-of-pocket costs.

Other states

Across the country, AKF has spearheaded the introduction of bills that remove barriers for living organ donors. Living donor protection bills we support would prevent insurance discrimination toward living organ donors, ensure living donors have job-protected leave, provide paid leave for organ donors and provide reimbursements and/or tax credits for unreimbursed donor expenses. Such bills are pending or will be introduced soon in Connecticut, Florida, Hawaii, Indiana, Kentucky, Maryland, Minnesota, New Jersey, New York, North Carolina, Pennsylvania, Rhode Island, South Carolina, Tennessee, Utah, Vermont, Washington and Wyoming.

Of these states where living donor legislation is pending, Connecticut is currently the only one with an A grade on our Report Card. If they were to pass an anti-insurance discrimination bill this year, they would have the widest range of protections for living donors in the country, based on the seven types of legislation we use to grade the states.

As part of AKF's mission to fight kidney disease and help people live healthier lives, we are working with lawmakers to create kidney disease task forces in eight states. These task forces would develop education, awareness and prevention strategies and programs in each state. Kidney disease is the fastest-growing non-communicable disease in the country, and the hope is that our efforts will help reduce the rate of kidney disease via creation of legislation to combat this problem.

There is much more to come this session, so stay tuned to this blog series for updates on all these bills and more. For now, learn how well your state protects living organ donors on our Report Card.

How can you help?

All these bills have a better chance of moving through the legislative process with your help! If you would like to contact your state elected officials about these bills or help with written or live testimony during bill hearings, please reach out to me, Melanie Lendnal, AKF's director of state policy & advocacy, at mlendnal@kidneyfund.org.