Autoimmune Advocates Push for Health Insurance and Research Reform on Capitol Hill

People living with autoimmune disease often face significant barriers related to health insurance coverage, medication costs, and access to care. That’s why the Autoimmune Association brings patient advocates to Washington, D.C. each year to advance stronger autoimmune health policy and ensure lawmakers understand the real challenges patients face.

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Last week, the Autoimmune Association brought passionate advocates from across the country to Capitol Hill for our 2026 Legislative Fly-In, a powerful day of advocacy focused on improving health policy for people living with autoimmune disease.

After a day of training and collaboration, these dedicated members of the autoimmune community headed to Capitol Hill, where they met with Congressional offices across the House and Senate. Their mission was simple but urgent: ensure that policymakers understand the real challenges people with autoimmune disease face and the policy solutions that can help.

Why Autoimmune Health Policy Matters

For millions of Americans, decisions made in Washington directly affect their ability to access treatment, afford medications, and navigate health insurance coverage. By sharing their personal experiences, advocates helped connect health policy decisions to the everyday realities of living with autoimmune disease.

More than 50 million Americans live with autoimmune disease, a group of complex conditions in which the immune system mistakenly attacks the body’s own tissues. Many patients live with multiple autoimmune diseases and require ongoing care, specialized treatment, and lifelong medication.

Despite their widespread impact, autoimmune diseases have historically received less research funding and policy attention than many other major health conditions.

At the same time, patients frequently face barriers within the healthcare system, including:

• High out-of-pocket costs for medications
• Health insurance policies that delay access to treatment
• Limited research funding to better understand autoimmune disease

These challenges make strong health policy advocacy essential. By meeting directly with lawmakers and congressional health staff, advocates helped ensure the autoimmune community’s voice was heard during critical policy discussions.

“The global incidence of autoimmunity is increasing, creating an urgent need to better understand these conditions and develop more effective methods of prevention, diagnosis, treatment, and ultimately a cure,” said Molly Murray, president and CEO of the Autoimmune Association. “We must also eliminate barriers that prevent patients from accessing care and treatments. Congress has an important role to play in improving the lives of millions of Americans living with autoimmune disease.”

Key Health Policy Priorities for Autoimmune Disease

During their meetings on Capitol Hill, advocates urged lawmakers to support several critical legislative priorities designed to improve healthcare access, strengthen health insurance protections, and advance autoimmune disease research.

• Invest in Autoimmune Disease Research

Advocates called on Congress to fully fund the National Institutes of Health (NIH) for FY27. Federal investment in research is essential for improving diagnosis, understanding the causes of autoimmune disease, developing new treatments, and ultimately finding cures. Greater research funding also supports studies exploring why autoimmune diseases develop and why many patients live with multiple autoimmune conditions.

• Expand the Office of Autoimmune Disease Research (OADR) within the Office of Research on Women’s Health (ORWH)

Advocates brought new, innovative ways to expand the OADR to accelerate autoimmune disease research and improve access to specialized care for patients. Advocates specifically raised:

1. 1. The expansion of the Autoimmune Disease Analysis Platform Testing Space (ADAPTS) to improve autoimmune disease research.
   2. To scale, expand, and establish additional Autoimmunity Centers of Excellence (ACE). Additional ACEs will allow patients across the country to access innovative autoimmune treatments through clinical trials.
   3. Increase the budget available to $120 million through the Office of Autoimmune Disease Research (OADR) for implementation of the strategic plan. This additional funding will significantly expand the current pipeline of autoimmune disease research.

• Reform Step Therapy Through the Safe Step Act

The Safe Step Act would improve step therapy protocols used by many health insurance plans. These policies often require patients to try and fail on insurer-preferred medications before accessing the treatment prescribed by their doctor. For people living with autoimmune disease, step therapy delays can mean worsening symptoms and unnecessary disease progression. The Safe Step Act would create a clear and transparent exceptions process, allowing patients to access medically necessary treatments more quickly.

• Reduce Medication Costs Through the HELP Copays Act

The Help Ensure Lower Patient (HELP) Copays Act addresses copay accumulator programs used by some health insurance plans. These programs prevent manufacturer copay assistance from counting toward a patient’s deductible or out-of-pocket maximum. As a result, patients can suddenly face thousands of dollars in additional costs once assistance runs out. For many people living with autoimmune disease who rely on specialty medications, these policies can create overwhelming financial strain. The HELP Copays Act would ensure that copay assistance counts toward patient cost-sharing obligations, helping reduce out-of-pocket costs.

• Strengthen the 340B Program Through the 340B ACCESS Act

Advocates also urged lawmakers to support the 340B ACCESS Act in the House and introduce similar legislation in the Senate. The 340B program allows certain healthcare providers to purchase medications at discounted prices, helping safety-net providers expand access to care for vulnerable patients. Strengthening this program helps ensure that more patients living with autoimmune disease can access the medications they need at more affordable prices.

Turning Personal Stories into Policy Change

Throughout the day, advocates shared their personal journeys with autoimmune disease. Their stories helped lawmakers see how health policy decisions affect real people navigating the healthcare system. These conversations helped transform statistics into personal stories and reinforced the urgent need for policies that support people living with autoimmune disease.

Advocacy That Continues Beyond Capitol Hill

Meaningful change requires ongoing engagement. Patients, care partners, and supporters across the country can help move these priorities forward by contacting their representatives and urging them to support policies that improve care for people living with autoimmune disease.

Visit our Autoimmune Legislative Action Center to:

• Learn about key autoimmune health policy priorities
• Understand how the legislative process works
• Contact your elected officials in just a few minutes
• Participate in advocacy campaigns that support the autoimmune community

Visit the Autoimmune Legislative Action Center

Help Strengthen the Voice of the Autoimmune Community

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