Arthritis Advocates Converge on Capitol Hill

Arthritis Foundation volunteers shared their stories with lawmakers to encourage legislative support.

By Anthony Williams | Sept. 27, 2023

After four years of advocacy activities being limited to virtual participation due to the pandemic, it was exciting to see new and familiar faces at the 2023 Arthritis Foundation’s Advocacy Summit.

Held in person, Sept. 10 to 12 in Washington, DC, the summit brought together 87 Advocates from 31 states. The event culminated in 134 meetings on Capitol Hill with U.S. senators and representatives on both sides of the aisle. Attendees urged their legislators to co-sponsor and support two pending federal bipartisan bills that would make health care more accessible and affordable to those living with arthritis and other chronic diseases.

If enacted, the Safe Step Act would ensure that employer health plans offer a process for step therapy expectations that is medically responsible and expedient. Step therapy occurs when a patient’s insurer or pharmacy benefit manager refuses to cover the cost of a medication until the patient first tries and fails other, lower-cost treatments. Step therapy-related delays in care can lead to severe or even irreversible health outcomes. 

Passing the HELP Copays Act would ensure that copay assistance is counted toward a patient’s cost-sharing, such as their deductible and out-of-pocket maximum. Copay assistance is often the only way patients can afford needed medications, even with insurance. When faced with large, unexpected insurance changes, patients may not be able to fill their prescriptions, or they may have to delay filling them. The bill would clarify cost-sharing definitions to ensure that all copays count. 

In training sessions, the Advocacy Summit’s central theme focused on effective storytelling, which helps lawmakers better understand the challenges of living with arthritis. After learning firsthand about the barriers patients encounter, elected officials are more likely to get behind measures that will improve health care access and affordability.

In addition, the summit gave participants the opportunity to celebrate several impressive accomplishments already achieved this year, including:
  • Relaunch of the Junior Ambassador program, which encourages teens to share their personal stories to help raise awareness that kids get arthritis, too
  • The passage of at least 17 new state laws that support arthritis patients
  • State lobby days that have occurred in Colorado, Missouri and Pennsylvania
  • The introduction of a congressional resolution to recognize the Arthritis Foundation’s 75 years of progress
Saluting a few outstanding Advocates was another highlight of the summit. The Edward M. Kennedy Advocacy Leadership Award, in memory and honor of Sen. Kennedy’s distinguished public service, recognizes and fosters individual advocacy and altruism to those affected by arthritis. Both Abby Kasprowicz of North Dakota and Katie Karr of New Jersey received that award. The Emerging Leader in Advocacy Award, for an individual 21 or under who has demonstrated public service to those impacted by arthritis in their community, was presented to Macy Coad, a Junior Ambassador in California.

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