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Autoimmune Association Advocating for Policies Important to Autoimmune Patients

Autoimmune Association is actively promoting proposals to protect and improve key policies in the federal and state arenas that are critical to the health and well-being of patients, and support the array of stakeholders that collectively deliver care and innovate for new and more effective treatments. Recent examples of Autoimmune Association advocacy include:

December

  • Autoimmune Association at Open Public Hearing to encourage the FDA Dermatologic and Ophthalmic Drugs Advisory Committee to support expedited and favorable consideration of a breakthrough drug for the treatment of Thyroid Eye Disease; TEPEZZA approved for March market launch.
  • Comments to CMS opposing advanced rulemaking that would apply international reference pricing and other restrictions affecting Medicare Part B beneficiaries with the Part B Access for Seniors and Physicians (ASP) Coalition and Partnership to Improve Patient Care (PIPC)

January

  • Letter to House Committee Leadership in support of in support of the “Seniors Prescription Drug Relief Act of 2019,” (S.2911) to provide a much-needed “smoothing” mechanism for Medicare beneficiaries to spread payment for Part D out-of-pocket costs across the calendar year, with MAPRx Coalition
  • Letter to Congress urging action to reverse an increase in Medicare Part D out-of-pocket (OOP) costs that will occur in 2020, with MAPRx Coalition

February

  • AARDA/NCAPG letter to all Senate and House Members to request that any consideration or efforts to use reference international drug prices in setting prices for medicines in American health care be rejected, and also with PIPC and ASP Coalition
  • Autoimmune Association comments to CMS on NBPP proposal to undermine copay assistance coupon programs offered by drug manufacturers on behalf of the National Coalition of Autoimmune Patient Groups, and also with the All Copays Count and I Am Essential coalitions
  • Outreach to Congress in support of “Strengthening Innovation in Medicare and Medicaid Act” and other steps to improve and protect the CMS CMMI with the Healthcare Leadership Council
  • Letter to the Food and Drug Administration to oppose any proposed linkage between the Institute for Clinical and Economic Review (ICER) and FDA with the Partnership to Fight Chronic Disease
  • Letter to Congress promoting passage of the Safe Step Act (HR 2279/S 2546), as part of the Safe Step Act Coalition
  • Letter to Oklahoma legislators opposing legislation to allow drug importation, coordinated by the National Grange; one of a series of communications with state legislatures on this topic, including Oregon, Maine, and New York

March

  • Comments to CMS regarding proposed rule on Contract Year 2021 and 2022 affecting Medicare Part D
    beneficiaries, urging reconsideration of a preferred specialty tier, enhancement of real-time benefit tools, and maximum out-of-pocket caps, smoothing mechanisms, and a fix to the out-of-pocket “cliff,” with the MAPRx Coalition
  • AARDA/NCAPG letter to Senate urging to weigh-in with CMS to assure that patients covered by Medicare Part B are able to access their infusion and injection treatments at home
  • Letters to Governors, State Medicaid Directors, Insurance Commissioners and Executive Directors of Boards of Pharmacy urging that they act to protect rare disease patients and high-risk populations during the COVID-19 crisis, with the Every Life Foundation.

April

  • Letter to HHS urging that the Department’s Office for Civil Rights issue additional guidance to ensure that schemes to ration scarce health care resources during the COVID-19 pandemic comply with federal nondiscrimination laws, with some 400 organizations in conjunction with the Partnership to Improve Patient Care (PIPC)
  • Letter to Congress urging expansion of eligibility for the paid family and medical leave program to include individuals determined by the Centers for Disease Control and Prevention (CDC) to be at high risk for adverse complications from COVID-19 and working members of their households, with the Cystic Fibrosis Foundation
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