Advocates Take Action at the Autoimmune Association’s Legislative Fly-In

On Thursday, March 20, 2025, advocates from 16 states came together for the Autoimmune Association’s Annual Legislative Fly-In event. Sharing personal stories, these advocates met with 62 House and Senate offices to push for critical policy changes that will improve the lives of millions living with autoimmune diseases. Their mission was clear: to ensure that patients receive timely, affordable, and effective treatments by urging legislators to support key healthcare policies.

A Unified Call for Change

Autoimmune diseases affect approximately 50 million people in the United States, yet patients continue to face hurdles when it comes to accessing the right treatments at the right time. The Legislative Fly-In provided a platform for advocates to share their experiences and call for bipartisan support on four key legislative priorities:

1. The Safe Step Act: Advocates urged lawmakers to cosponsor this vital bill, which seeks to improve step therapy Step therapy, often referred to as “fail first,” requires patients to try and fail one or more insurer-preferred treatments before accessing the treatment prescribed by their doctor. This can lead to delayed care and worsened health outcomes. The Safe Step Act aims to ensure that patients can safely and efficiently access the best treatment for them.
2. The HELP Copays Act: High out-of-pocket costs remain a significant barrier for patients managing chronic illnesses. The Help Ensure Lower Patient (HELP) Copays Act would require insurance plans to count copay assistance toward patients’ cost-sharing obligations. Advocates emphasized how this legislation would provide much-needed financial relief for patients who depend on life-saving medications.
3. The 340B Access Act: Access to affordable drugs and health services is essential for patients with autoimmune diseases. The 340B program allows safety-net healthcare providers to purchase medications at discounted rates to support underserved communities. The 340B Affording Care for Communities and Ensuring a Strong Safety-net (ACCESS) Act seeks to ensure that these savings are passed on to the patients who need them most. Advocates pushed for cosponsors to protect and enhance this critical program.
4. Support for the Office of Autoimmune Disease Research: Advocates called for continued funding for the National Institutes of Health and Advanced Research Projects Agency for Health (ARPA-H) program to support the Office of Autoimmune Disease Research.

Personal Stories That Move Mountains

Throughout the day, advocates shared their personal journeys to humanize the urgent need for policy change. Their stories turned statistics into compelling calls for action.

“As a younger person living with an autoimmune disease, I’m getting involved now because the policies we’re creating today will greatly affect my future,” said Alonna Kolobakken, an advocate from North Dakota who is attending college in Florida and is a member of the Autoimmune Association’s Young Adult Advisory Council. “It’s empowering to know that by speaking up, I’m helping to build a healthcare system that works better for all of us — not just now, but for years to come.”

Another advocate, Connie Montgomery from South Carolina, spoke about the financial toll of managing autoimmune disease. “Prescription costs are overwhelming. Copay assistance has been a lifeline for me, but insurance companies shouldn’t be able to disregard it when calculating my out-of-pocket expenses. The HELP Copays Act is essential to making treatment affordable.”

Turning Advocacy into Action

The impact of the Fly-In extended beyond the number of meetings held; it was about building relationships, educating policymakers, and ensuring that the voices of autoimmune patients were heard loud and clear.

“Our advocates came to Washington not just to share their struggles but to push for solutions that can change lives,” said Molly Murray, president and CEO of the Autoimmune Association. “Their stories have the power to shift perspectives and influence policy.”

The Road Ahead

While the Fly-In was a powerful moment of advocacy, the work doesn’t stop there. Continued engagement with lawmakers, raising public awareness, and building coalitions are essential for advancing these legislative priorities. We encourage patients, care partners, and supporters to contact their representatives and urge them to cosponsor these important bills. Visit our Autoimmune Legislative Action Center to learn about the legislative process and our policy priorities, and find easy-to-use tools to contact your elected officials and participate in advocacy campaigns.

Together, we can create a future where access to affordable, timely, and effective treatment is a reality for all.