What's happening in the states: May 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 protect living organ donors.

AKF is currently working on more than 120 bills in 40 states. We have made great progress, in large part due to the work of our dedicated Ambassadors! Legislation to protect living organ donors has been signed into law in Washington, New Jersey, Pennsylvania and Kentucky, elevating all their grades on our State of the States: Living Donor Protection Report Card. Accumulator ban bills have been signed into law in Arkansas, Oklahoma and Kentucky, making it easier for patients to afford the cost of medications. Bills combatting discrimination against transplant recipients have been signed into law in several states, including Arkansas, Georgia, Wyoming and Oklahoma, ensuring that people with disabilities do not experience discrimination when determining eligibility to receive an organ transplant.

Texas

There are more than 70,000 people living with kidney failure in Texas, which puts Texas behind only California when it comes to the states with the most people with kidney failure. There are nearly 8,500 Texans on the kidney transplant waiting list, but only 1 in 4 Texans on the waiting list were able to get a kidney in 2020. We are grateful to be working with Texas lawmakers to pass living donor protections in the state — and we are close! House Bill 317 has already passed the full House and it passed the Senate Business and Commerce Committee at the beginning of May. We are hopeful that it will pass the full Senate soon.

The bill would prohibit insurance companies from discriminating against people based on their status as an organ donor. Right now, Texas does not have a law in place to protect living organ donors from experiencing discrimination in their ability to receive life, disability and long-term care insurance. By preventing discriminatory insurance practices, this bill would remove barriers to living donation and increase the supply of organs available for transplantation.

Accumulator ban bills

We have mentioned our progress on accumulator ban bills in our previous state updates, but here is a quick refresher on what we will accomplish:

A copay accumulator — or accumulator adjustment program — is a strategy used by health insurance plans and pharmacy benefit managers to stop manufacturer copay assistance coupons from counting toward your annual deductible and maximum out-of-pocket costs, leading to higher costs for you. Manufacturer copay assistance coupons are a form of financial assistance from drug companies, and it is relied on by people with chronic diseases, like kidney disease, to help pay for high deductibles and out-of-pocket costs.

AKF has been successful at spearheading and passing "accumulator ban" bills that would prevent health plans and pharmacy benefit managers from being allowed to not count copay assistance as part of your deductible and out-of-pocket costs. This year, Arkansas, Kentucky and Oklahoma have already passed accumulator ban bills, and we're working on other bills in Michigan, Ohio, Oregon, Tennessee, Texas and other states.

Kidney disease task force bills

As rates of kidney disease continue to rise across the country, we have introduced legislation to create a kidney disease task force in each of the following states: Colorado, Connecticut, Louisiana, Massachusetts, New Jersey, Nevada and Oregon. These task forces would work to create policy proposals for lawmakers and regulators to consider that will help reduce the prevalence of kidney disease in those states.

We expect the task forces' recommendations to be meaningful and to address:

1. Underlying causes of kidney disease
2. Available treatments, including increasing living organ donor transplants and expanding access to different treatment modalities
3. Kidney disease education and outreach, especially among populations most affected by this disease

A kidney disease task force can have a real, meaningful impact on a state. For example, Texas' kidney disease task force (created in 2019) made a recommendation that has led to a bill currently working its way through the Texas Legislature. The bill, HB 4015, would establish the Rita Littlefield Chronic Kidney Disease Centralized Resource Center in the state. The resource center would provide information about kidney disease and related illnesses, including treatment options for each stage of kidney disease, including kidney failure. The resource center would also provide information on accessing free screenings for kidney disease and related illnesses.

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 Melanie Lendnal, AKF's director of state policy & advocacy, at mlendnal@kidneyfund.org.