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EXTRA Part 2- Non-Radiographic Axial Spondyloarthritis: A Conversation with Policy Expert Amanda Ledford and Patient Advocate Ricky White

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In the second part of a two-part episode dedicated to non-radiographic axial spondyloarthritis (non-rad AxSpA), our hosts are joined by Amanda Ledford, Director of Policy at UCB, and patient advocate Ricky White, who lives with non-rad AxSpA. Amanda and Ricky discuss the advocacy efforts around helping patients receive a diagnosis and how policy and advocacy play a role in helping patients access affordable treatments.

"We're really working to remove barriers to the providers’ ability to prescribe the most appropriate therapy to their patients. We feel strongly that decisions about the most appropriate treatment should be made by the health care provider and the patient rather than the insurance company,” says Amanda.

Among the highlights in this episode:

2:41: Amanda Ledford shares the importance of using a specific ICD-10 – or diagnosis code – for nr-axSpA, and the challenging journey to get the application for the code creation approved

4:37: “With continuing advocacy from UCB, patient groups, [and] professional societies, a new and specific code for nr-axSpA became effective October 2021,” says Amanda

6:20: “Getting disease codes like [ICD-10] is key for people to get the accurate diagnosis and then get treatment,” says Ricky White

7:09: Ricky provides his insights on the access issues and barriers he and other patients encounter in the U.S. when it comes to getting the medication that works best for them

8:55: Amanda shares the efforts to get affordable and equitable access to care for all patients

9:49: “UCB is working with a coalition of patient groups, including GHLF… to advocate for step therapy override legislation at both the state and federal levels,” says Amanda

10:38: Over 30 states have enacted step therapy override legislation so far

11:24: Amanda discusses treatment affordability and explains the concept of copay accumulators

13:01: “16 states and Puerto Rico have already passed some form of copay accumulator legislation at the state level,” says Amanda

14:25: How individuals and local patient organizations can defend treatment affordability and help pass legislation at the state level

15:17: “GHLF has a 50-State Network where we're active in all 50 states and Puerto Rico and we always encourage advocates to join us and advocate with us whether it's testifying, submitting comment letters, or writing an op-ed about your experience” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF

More information here: www.50statenetwork.org

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

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