State of the States: New Year, New Issues, Same Parties

New Year, Same State Leadership (Mostly)

The federal landscape has certainly shifted coming into 2025; however, the composition of state governments has only changed very slightly. While more federal initiatives are on the horizon with a new Presidential Administration, let’s look at how the states will help or hinder those efforts.

Following last year’s elections, the congressional and gubernatorial (governor) makeup of the states around the country has only seen minor changes from 2024. As of 2025, there are currently 28 state legislatures controlled by Republicans and 18 legislatures controlled by Democrats, with three divided: Minnesota, Michigan, and Pennsylvania. Among the states, there are also 23 Republican trifectas (where all branches are controlled by the same party), 15 Democrat trifectas, and 11 states divided between the legislature and governor’s parties. This is almost the exact same composition as last year, with the only change being the split in Minnesota’s party control.

So, what does all this mean for state and federal efforts?

Digging in Hard on Party Issues

Since state legislatures have not changed much around the country despite the slim Republican trifecta in the federal government, most states with consolidated control will be heavily pursuing party-line agenda items. This includes heavy budget cuts and diversity initiative rollbacks in Republican states and work to protect minorities and major healthcare programs like Medicare and Medicaid in Democrat states. Any legislation being pursued on a state level will closely follow the Republican Party’s federal agenda, and state legislation will have echoed support through key leadership seats in both the House and Senate.

Because of this echoed support, HFA will have a strong focus on advocacy efforts in these states this year to help our work on a federal level, and vice versa. We will continue to reach out to all relevant members of congress on the state and federal level, but we cannot underestimate the importance of communicating with members and states who have a large voice in Washington.

Aside from party-line agendas, most states will be working to balance budgets and reduce spending, which, as HFA has already seen and is mentioned below, may lead to difficulty in getting certain legislation passed.

HFA’s Policy Priorities Across the States

As we pursue our efforts to improve access to quality health coverage, safe and effective treatments, and affordability of care and coverage, we are following several states that have introduced copay-related legislation or are looking to establish Rare Disease Advisory Councils, among other items.

Copay Accumulators and Maximizers

If you’ve been following the issue of Copay Accumulator Adjuster Programs (CAAPs), you may already be familiar with the work done by The AIDS Institute to combat them, like our work at HFA. That said, if not (or if you haven’t seen it yet), they have released their 2025 report of CAAPs use across the states. The report determined that 39 of 50 states had at least one insurer with a CAAP and that 17 states were graded a D or F based on how many state insurance plans had a CAAP in place (75-100%). The report also graded twelve states as an A, with zero insurance plans using CAAPs, and noted some states where bans have been enacted but still have plans with CAAPs in effect, like Tennessee, Minnesota, Nevada, and Colorado.

Currently, HFA is aware of 11 states that have introduced bills to ban CAAPs and/or copay maximizers in 2025: Iowa, Indiana, Maryland, Missouri, North Dakota, Nebraska, New Hampshire, New Jersey, South Carolina, Tennessee, and Utah. Except for Utah, all these states are currently moving the bills through the committee process, with Iowa, Missouri, and New Hampshire showing significant progress. Utah’s bill has faced some significant hurdles, including a fiscal note (which analyzes the impact of a bill on a state’s budget) and heavy insurance industry lobbying within the legislature. Many states are working hard to not expand their budgets or reduce them outright, and fiscal notes showing a cost increase may become a big challenge to overcome this year across the country, not just in Utah.

We anticipate legislation to be introduced in states like Minnesota and Ohio as well and will be following those bills closely once they are released. Other states like California are pursuing a regulatory ban on copay accumulators, which aims to enforce language for the federal agencies like CMS that is currently not being implemented by the federal government. This was the direction pursued by Minnesota and Nevada last year, with some success, and might be an easier route for copay accumulator bans than outright legislation, despite being more subject to change over time.

If these bills are passed, these 11 states would join a group of now over 20 states and territories (including Washington, DC, and Puerto Rico) that have CAAPs bans in place, and we will continue to support these efforts on the state level.

Rare Disease Advisory Councils

While we remain focused on improving access and affordability for our patients, we also are looking to lift patient voices to a more prominent level within state governments through the creation of Rare Disease Advisory Councils.

Rare Disease Advisory Councils (RDACs) are boards of patients, physicians, and medical industry professionals that are affected by or work with rare diseases, and which provide consultative support to state governments. Since Hemophilia and some other bleeding disorders are rare diseases affecting only a few tens of thousands of patients (out of the 330 million+ US population), we strongly believe that elevating the patient experience through these councils is vitally important to pursuing legislation that protects our community members and preventing legislation that would negatively impact bleeding disorders.

Currently, thirty states have created RDACs that can help elevate the rare disease community’s voice and help ensure that policies are created with our needs in mind. As of this article, we are also aware of 9 states that have introduced RDAC legislation in 2025: Arizona, Hawaii, New York, Oklahoma, Oregon, Rhode Island, Texas, Vermont, and Washington. Should all these bills pass, it would leave only 11 remaining states to implement them before the entire nation has representation from the rare disease community!

The National Organization for Rare Disorders (NORD) is leading the charge on these bills; as a NORD member, HFA is happy to see such strong progress and will continue supporting their passage and mobilizing our community in any advocacy efforts across the country that aim to establish these councils. As of this publication, we have not heard of any of these bills failing to make their way through the legislature, but we will continue to follow them as we progress through the year.

Where We Go From Here

As we continue to work for the benefit of our community, we will provide new updates on state initiatives, information on new areas of priority for public policy as it relates to bleeding disorders, and ways that you can help and stay engaged – your stories are what make change happen. The United States is a big country with a lot of diverse people and different walks of life, and we encourage you to contact your legislators on issues that are important to you, both as it relates to bleeding disorders and otherwise.

Aside from contacting your representatives, you can also reach out to HFA directly with comments or suggestions on issues that you feel are important and would like us to consider, so that we can best help the community on the issues that matter most.

Your Role in Our Continued Work

HFA’s efforts need amplification from your stories to protect and empower the entire bleeding disorders community. Raise your voice to be heard with HFA today by:

• Joining HFA’s Advocacy Network,
• Contact members of congress to block Trump’s funding freeze or
• Contacting your legislator about the Enhanced Premium Tax Credit.

Also, be sure to stay up to date with our next Word from Washington post and State of the States posts here, and encourage your friends, family, and local bleeding disorders chapter to support us in this work!