AARDA Nationwide Advocacy

AARDA Advocates for Policies Important to People Living with Autoimmune Disease and Their Families

The American Autoimmune Related Diseases 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 people living with autoimmune disease and their families. AARDA supports an array of stakeholders that collectively deliver care and innovate for new and more effective treatments.

Recent News

  • AARDA.org
    Statement from Randall Rutta, President and CEO, American Autoimmune Related Diseases Association on HHS Approval of Notice of Benefit and Payment Parameters Rule

    Washington, D.C. (May 8, 2020) – Randall Rutta, President and CEO of the American Autoimmune Related Diseases Association, released the following statement on HHS’ decision to move forward with a rule that allows health insurers not to count copay assistance toward out-of-pocket maximum limits for medications:

    “On behalf of millions of patients living with autoimmune and chronic diseases, their families, and the healthcare professionals who care for them, we are deeply disappointed by the Administration’s finalization of the 2021 Notice of Benefit and Payment ParametersSpecifically, allowing health insurers to not count copay assistance support from drug manufacturers towards patient annual cost-sharing limitations is harmful at a time when so many people are struggling personally and financially. We should be doing everything we can to ensure that patients have affordable access to the medicines they need. This move is counterproductive for millions of patients and families.

    “AARDA opposed the proposed reversal earlier this year, urging HHS to retain the copay assistance policy that helps patients cover out-of-pocket costs for medicines, allowing them the ability to maintain stability in health conditions, avoid exacerbations or relapses, and achieve continuity of care. We strongly believe now, as we did then, that patients should not be punished for accessing such assistance.

    “We urge the Administration to reconsider its decision and recognize the reversal will cause unnecessary hardships and risks to health and wellness. We will continue to work with CMS and policymakers to highlight the importance of changing course on this rule.

    “Now more than ever, those dealing with serious, rare, and chronic conditions need assurance that they can access necessary medications without unnecessary costs. Refusing to count copay assistance from drug manufacturers toward out-of-pocket cost limits will result in major health setbacks and unmanageable financial burden for millions. In the midst of a global pandemic, patients deserve better from Washington.”

AARDA in Action

May 2020

  • Letter to CMS on the recent interim final rule related to the COVID-19 public health emergency comment period titled Medicare and Medicaid Programs; Policy and Regulatory Revisions in Response to the COVID–19 Public Health Emergency (IFC), issued by the Centers for Medicare and Medicaid Services.

April 2020

  • 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
  • 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

March 2020

  • 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
  • Letter to Congress promoting passage of the Safe Step Act (HR 2279/S 2546), as part of the Safe Step Act Coalition
  • 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.

February 2020

  • 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
  • AARDA 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 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

January 2020

  • Letter to House Committee Leadership 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

December 2019

  • AARDA 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)