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On February 8, 2020, ARC’s Manager of Healthcare and Education, Lori Bulpett, attended the inaugural Rare Disease Working Group Meeting, hosted by the Alliance for Patient Access (AfPA), in Washington, DC. The meeting’s focus was on amyloidosis and the various issues that patients face in accessing treatment options. The AfPA brings together policy-minded clinicians and advocacy groups from across specialty areas throughout the country to advocate for policies that support better health outcomes for patients.

Christina Shen, a cardiology and heart failure nurse at the University of Chicago Hospitals, noted that her patients are financially responsible for an average of $3100 per month for just one of their prescribed medications. For much of the amyloidosis patient population, that copay isn’t feasible.

Fortunately, many patients can take advantage of a manufacturer’s copay assistance program to assist with high costs, but not all patients qualify. Even if a patient does qualify, there are often roadblocks in place, such as an accumulator adjustment program, preventing them from fully benefitting from such assistance.

Dr. Amanda Peltier, a neurologist from Vanderbilt University, added that in other disease states she treats, insurance companies force her to provide proof that the patient has not had success on 3 or 4 other medications, before finally allowing the patient to receive the drug that Dr. Peltier wanted for her patient all along.

Hearing from clinicians about their patients’ experiences was extremely powerful, as well as from patient advocates themselves, such as Paula Schmitt from Amyloidosis Support Groups. Paula and her team hears first-hand all the hurdles amyloidosis patients encounter, and the tribulations the whole family goes through due to these obstacles.

The Alliance for Patient Access is actively working against these and other roadblocks that insurers, pharmaceutical companies, and legislators are putting in place. The AfPA has created podcasts, policy papers, position summaries, explainer videos, and many other publications to try to raise awareness of these issues and the real affect they have on a patient’s care. Patients deserve access to the care they need, and ARC is proud to be a partner as the AfPA works to solve these issues.

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