The second half of 2026 is well under way, signaling a shift in focus for state policy activities as the majority of states have now completed their legislative activity for the year. The first half of 2026 was active for state legislatures in 46 states, while the four others did not have active sessions.
Overall, states faced challenging decisions in their 2026 sessions as they prepare for the implementation of federal funding changes in programs like Medicaid and SNAP.
Despite the challenging fiscal climate, health policy remained a focus, and there was robust movement in several issues on the RARE Foundation’s state policy priorities grid.
So far this year, the RARE Foundation has submitted 35 testimonies in 20 States across 8 issue areas. We also held advocacy days in North Carolina and Arizona and attended multiple conferences such as Women in Government, to build connections with state legislators and reinforce the importance of state policy actions that can improve the diagnosis and access to care for rare disease patients.
Read on for a recap of activity across a few key priorities from the state policy grid.
Medicaid
Medicaid and the implementation of the One Big Beautiful Bill Act (OBBA) took the spotlight in many state sessions, with states like North Carolina, Idaho, New Hampshire, Indiana, Kentucky, Utah, and Wyoming passing legislation. For example, North Carolina’s Medicaid budget included limits on self-attestation, monthly verification, and maximum cost sharing — all of which are far beyond the requirements included in OBBA.
Similarly, in May, Nebraska became the first state to begin community engagement requirements before the required January 1, 2027 deadline, with Montana, Arkansas, and Iowa beginning later this year. Nebraska was the first state to release a list of conditions that will guide states when deciding someone’s status as medically frail.
On June 1, the Centers for Medicare and Medicaid Services (CMS) released an interim final rule, giving states additional guidelines for the implementation of community engagement requirements, including the process for determining exclusions and short-term exceptions. Given the short turnaround time for states to integrate the new guidelines into their plans prior to the January 1st deadline, advocacy is more important than ever.
Guided by Community Congress feedback, we sent letters to each state implementing community engagement requirements, highlighting their impact on the rare disease community and suggesting actions to minimize coverage losses. The letters leveraged early data from the pre-print of our analysis of rare disease beneficiaries in each state’s Medicaid program. The communication also included an explanation of the rare disease coding gap and why data-driven strategies to verify exclusions may miss rare disease patients and caregivers.
Newborn Screening
This year, Illinois became the 15th state to become RUSP-aligned. When a state is RUSP-aligned, they are required to screen newborn babies for any disorder on the federal Recommended Uniform Screening Panel (or RUSP), must implement a timeline in which the screening must begin, and must ensure that resources will be available to fund all conditions added to the RUSP in the future. In addition, new information about Alabama’s program led to an additional RUSP state being added to the list of states because of legislation passed in 2021. Unfortunately, RUSP legislation in Wisconsin did not move forward this year due to changes in their administrative process.
Today, 68% of babies in the US are born in RUSP-aligned states. We will continue to support advocates and state officials willing to advance RUSP-alignment legislation in 2027.
Key Testimonials and State Legislation:
- Genetic Non-Discrimination: Legislation that closes loopholes in Federal non-law, banning discrimination in disability, long-term care, and life insurance. MO, RI, MA, NE, IL, MN and CA introduced legislation, although none passed. In 2026, genetic non-discrimination was one of our top categories of testimony submissions in states like Massachusetts, Nebraska, Illinois, and California. MA H5112 was reported favorably by the Committee on Health care financing in April.
- Prior Authorization: Bills focused on faster decisions, transparency, and continuity of coverage. Legislation in California (AB 1887), which would require health plans to complete prior authorization for rare diseases within 30 days, passed the first chamber in May with amendments removing the step therapy provision. Other states like Kentucky, Virginia, Alaska, West Virginia, Delaware, and New Mexico passed legislation regulating prior authorization.
- Co-pay Diversion: Legislation ensuring that all payments toward a patient’s deductible count, including those made by a third party. After significant success in recent years, activity on co-pay accumulators has slowed down as progress becomes more challenging in the remaining states. This year MD, ND, IN, and NH passed legislation, and we submitted testimony on legislation in MO and SC.
- AI in Health Care: States continued to consider legislation regarding AI this session, with states like Washington, Colorado, and Indiana passing legislation regarding prior authorization and transparency. Looking into the rest of 2026 and 2027, it’s likely we will see this area of policy growing for states.
While few states will be in session this fall, we’ll continue to monitor states with sessions into the summer, which includes Michigan, Ohio (recess), California, Pennsylvania, North Carolina, Massachusetts, New Jersey, Delaware, and Puerto Rico. In the fall, we will be working toward building new connections with state lawmakers and continuing to engage state officials about Medicaid changes.
For questions, contact: kpoe@rareadvocates.org
