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

Autoimmune patients welcome the Administration’s decision to delay implementation of the Medicaid best price rule that would jeopardize critically important copay assistance programs. The two-year delay highlights the flawed nature of this harmful policy. While the action is a step in the right direction, AARDA remains deeply concerned that the proposed change could eventually be implemented.  Instead, this provision should be withdrawn.

In a survey earlier this year, AARDA found that 92 percent or more of autoimmune patients report that copay assistance helps them afford medicines and take them as prescribed. Reducing copay assistance programs potentially threatens patient health and well-being by unfairly shifting the burden of cost away from insurers and PBMs and onto patients, who are often struggling to manage costs of care.

Earlier this year, AARDA strongly opposed an equally harmful policy that will permit insurers and PBMs to exclude the value of copay program cost-sharing assistance when calculating a patient’s deductibles and out-of-pocket maximum requirements. Unlike the rule that was just delayed, this rule governing insurance practices could affect patients in the New Year, and a follow-along proposed rulemaking for 2022 further calls into question support for copay assistance support to patients longer-term. Collectively, the Administration’s delayed rule, and those slated for immediate implementation by insurers and in 2022, represent a threat to the ability of patients to access their medicines and take them as prescribed, even as they and their families struggle with negative implications of the COVID-19 pandemic.

AARDA continues to advocate for patients’ access to care, and we urge policymakers and regulators do the same. Patients deserve better. AARDA strongly encourages the new Administration and the new Congress to support copay assistance and put patients’ health and wellness first.

AARDA in Action

August 2020

July 2020

  • Campaign to encourage CMS to drop a provision in a Medicaid Pricing Rule that would apply unworkable requirements on drug manufacturers that could undermine copay coupon assistance programs that help patients access and afford their medicines and care, increasing the financial burden to patients during in the challenging environment created by the COVID-19 pandemic
  • Signed onto patient group letter encouraging Florida state legislators to guard against high patient cost-sharing for prescription medicines by opposing insurance plan use of accumulators
  • Joined patient advocates on a letter to Ohio state legislators requesting action to protect patients from a practice being implemented by various health insurance plans, pharmacy benefit managers, and employers
  • Lead sign-on letter with IDF and LFA urging Congressional leadership, as part of the next Coronavirus (COVID-19) legislation, to task the CDC with working with stakeholders to develop a recommendation to ensure the needs of immunocompromised Americans are adequately addressed

June 2020

  • Signed letter in support of the Part B Access to Seniors and Physicians (ASP) Coalition’s mission to preserve patient access to Medicare Part B covered services, including restoration of full access restore unfettered access to Medicare Part B covered drugs for beneficiaries enrolled in Medicare Advantage (MA) plans
  • Letter to CMS to encourage you to make the development and availability of treatments for pain – and particularly non-addictive options – a high priority within your agencies
  • Joined PIPC on a letter urging ICER to pause any future development of assessments related to COVID-19 and focus on partnering with stakeholders in the development of rigorous and patient-centered methodologies
  • Signed onto letter organized by the Aimed Alliance to Congress in support of legislation that would prohibit the use of prior authorization and step therapy during the public health crisis. Comparable to prior letter sent to governors, state legislators, and CMS

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
  • Joined patient groups advocating to Expand Access to Part B Therapies in a letter calling on CMS calling to allow more flexibility for patients to receive in-home infusions and injections of therapies and treatments
  • Signed onto patient group letter encouraging New York state legislators to guard against high patient cost-sharing for prescription medicines by opposing insurance plan use of accumulators
  • Joined letter spearheaded by NORM Tennessee opposing TN Blue Cross Blue Shield decision to deny coverage of a new rare disease breakthrough treatment of Thyroid Eye Disease in favor of steroids, which are not approved by the FDA for this purpose

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
  • Letter to House Appropriations leaders to request continued support for the critical and highly successful defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP)

March 2020

  • 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
  • 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
  • Letter coordinated by the Arthritis Foundation to House leadership supporting an appropriation for osteoarthritis research at the US Department of Defense Congressionally-Directed Medical Research Program, one of many communications to congress supporting funding of general and disease-specific autoimmune research projects at DoD

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
  • 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)