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The Autoimmune Association advocates for policies important to people living with autoimmune disease and their families

Autoimmune Association promotes 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. Autoimmune Association supports an array of stakeholders that collectively deliver care and innovate for new and more effective treatments.

Legislative Priorities

Our current advocacy strategy is guided by the following priorities:

1. Work to improve healthcare affordability and patient access to care by seeking reforms to out-of-pocket medical expenses.
2. Support reduction of the impact of burdensome utilization management protocols on patients suffering from autoimmune and immune-mediated conditions.
3. Address copay accumulator modifiers, prior authorization, step therapy, and other barriers to care.
4. Ensure that drug pricing reform does not impact the ability of patients to access necessary treatment.
5. Support legislative proposals that address health disparities and promote equity for medically underserved populations.
6. Increase funding for research into autoimmune and immune-mediated conditions, especially rare conditions/diseases.
7. Improve awareness of autoimmune and immune-mediated conditions in Congress.
8. Work to educate and empower the autoimmune and immune-mediated community about biologics and biosimilars and support the reduction of non-medical switching by ensuring decisions are between the patient and provider.

Putting Patients First

It is critical that patients and clinicians be permitted to make patient-focused treatment decisions. Barriers to doctors making informed decisions for their patients pose potentially serious risks of negative health consequences. Pharmaceutical step-therapy, non-medical switching by formulary managers and insurance companies, barriers to specialty care, and other policies that interfere with independent clinical judgment of a patient’s treatment team do not serve the health of the individual and create harmful obstacles to improved health and wellness.

Affordability, Access, and Adherence to Care

Ensuring the health care of individuals with autoimmune disease requires affordable and accessible care. The availability of copay assistance programs and other programs and policies that facilitate affordability and access to prescribed care for patients are critical for patients with serious and chronic conditions, including patients with autoimmune diseases.

Addressing Healthcare Disparities in Autoimmune Disease

Autoimmune diseases are complex and often difficult to diagnose. Many patients live years without being properly diagnosed, and others are never diagnosed. Of those affected with autoimmunity three-fourths are women. Additionally, people of color are disproportionately affected and frequently face additional hurdles in access to care.

Increasing Federal Investment in Autoimmune Research

The Autoimmune Association is committed to increasing investment in autoimmune research programs through mechanisms such as the Department of Defense Congressionally-Directed Medical Research Program , the National Institutes of Health (NIH), Autoimmune Diseases Coordinating Committee (ADCC), and other autoimmune disease research.

Autoimmune Association in Action

Autoimmune Association Sends Letter to Congress Regarding Drug Pricing Priorities for Autoimmune Patients 
The Autoimmune Association sent a letter to key members of Congress with the undersigned 50+ patient groups on the importance of drug pricing policy concerns, priorities, and solutions for individuals living with autoimmune disease.

June 2021

Autoimmune Association Releases Statement Regarding Financial Incentives From Insurance Companies
Biosimilars play a vital role in treating patients with complex and costly conditions. However, Autoimmune Association remains concerned by the increased role Cigna and other health insurance companies are taking to interfere in the patient-clinician treatment decision by attempting to bribe patients to switch from one medicine to another.

May 2021

Autoimmune Association Featured in Health Affairs on Eliminating Disability Bias in Health Care Decision Making
In a letter to Health Affairs in May, Autoimmune Association was featured with 10 other patient groups voicing concerns about the use of discriminatory measures that deny individuals with disabilities equal opportunity to receive care.  The letter urged the Biden administration to prevent the use of quality-adjusted life year (QALY) in policymaking and to address discrimination head-on by adopting the recommendations from the National Council on Disability.

Autoimmune Association Sends Letter to Oregon Legislature Expressing Serious Concerns for Prescription Drug Affordability Board Bill (SB 844)
Autoimmune Association sent a letter in May to the Oregon legislature expressing serious concerns for a bill (SB 844) that would set an Upper Payment Limit (UPL) on prescription drug reimbursement.  Autoimmune Association is concerned that the bill would not only limit life-saving treatment to autoimmune patients but could harm providers by limiting reimbursement and forcing the closure of community clinics.

April 2021

AARDA’s Let My Doctors Decide Campaign Letter to Cigna on $500 Non-Medical Switch Incentive
Over 70 patient groups signed on to Autoimmune Association led letter to Cigna expressing concerns regarding Cigna’s letters to patients encouraging them to switch from Cosentyx to a preferred drug with a $500 debit card.  Specifically, Autoimmune Association and the undersigned groups were concerned that this non-medical advice paired with a financial incentive with the express purpose of moving a stable patient to a different drug undermined the shared decision-making between the patient and prescriber.

Autoimmune Association Co-Leads Drug Affordability Letter, 124 Patient Groups Sign-On
Autoimmune Association lead a sign-on letter with the HIV+Hepatitis Policy Institute addressed to HHS Secretary Becerra on policies to improve prescription drug affordability for patients.  124 patient groups signed-on to policies that included enforcing ACA non-discrimination provisions, cost-sharing caps, requiring insurers to offer first dollar coverage of prescriptions, counting copay assistance toward out-of-pocket maximums, and addressing roles of rebates with pharmacy benefit managers.

Autoimmune Association Endorses Louisiana Sign-On Letter to Create Rare Disease Advisory Council
Autoimmune Association was active in Louisiana to support individuals with rare autoimmune diseases by signing on to a letter of support for HB460, a bill that would create a Rare Disease Advisory Council and prioritize the many living with a rare disease in Louisiana.

March 2021

Autoimmune Association Signs on to Friends of NIEH Approps Letter
ARDA continued its calls to increase federal investment in autoimmune disease research by signing on to the Friends of NIEH FY22 Appropriations Letter.  The letter requests $875 million for the NIEHS in FY22 that would go to increasing research in prevention of human illness and disability by understanding how environmental illnesses influence development of diseases including autoimmune disease.

Autoimmune Association Endorses Michigan Legislation to Protect Patient Copay Assistance
Autoimmune Association on March 3rd endorsed HB4353, a bill in Michigan that would ensure patients and families that rely on copay assistance programs from manufacturers and other organizations continue to receive this assistance.  As new “accumulator adjuster programs” sweep across the states attempting to bar copay assistance from counting toward patients’ out-of-pocket costs, Autoimmune Association continues to work to protect this assistance.

Autoimmune Association Signs on to Letter to South Dakota Delegation Opposing Part D Changes to Six Protected Classes
In a sign on letter to South Dakota’s Congressional delegation on March 1, Autoimmune Association asked for the members to oppose the recent changes to Medicare Part D that would have a significant impact on Medicare beneficiaries due to the limit of access to medications within the Six Protected Classes.  The demonstration would dismantle important patient protections that many autoimmune patients rely on to live a healthy life and access life-saving medications.

February 2021

Autoimmune Association Sends Letter of Support to Protect Patient Copay Assistance in Tennessee
Autoimmune Association on February 26 sent a letter of support for SB1397, a bill in Tennessee that would ensure that patients and families whom rely on copay assistance programs from manufacturers and other organizations continue to receive this assistance.  As new “accumulator adjuster programs” sweep across the states attempting to bar copay assistance from counting toward patients’ out-of-pocket costs, Autoimmune Association continues to work to protect this assistance.

Autoimmune Association Signs on to Partnership for Part D Access Letter Opposing Part D Changes to Six Protected Classes
In a sign on letter to HHS with the Partnership for Part D Access, Autoimmune Association asked the administration on February 25 to eliminate the policy proposal to allow for flexibilities under Part D plans that participate in its Part D Payment Modernization Model as plans could limit the drugs they cover including medications used to manage complex conditions, including autoimmune disease and other serious illnesses.

Autoimmune Association Signs on to Letter to NIH with Long COVID Coalition Sharing Recommendations for the PASC Initiative
In a letter to NIH February 25 signed on to by AARDA, the Long COVID Coalition recommended that the agency should prioritize the research of those with lingering symptoms, also known as “post-acute sequelae of SARS-CoV-2 infection (PASC)”.  The recommendations highlight the needs of individuals living with chronic conditions, including autoimmune disease, and the disproportionate impact this illness has on the lives of those living with the disease.  Other recommendations include prioritizing patient engagement, expanded clinical trials, and to diversify those studied in control groups.

Autoimmune Association Signs on to MAPRx Letter Opposing Changes to Medicare Part D
AARDA signed on to a letter February 15 with MAPRx asking HHS to rescind the CMS Part D Payment Modernization Model for plan year 2022 that was announced under the prior administration.  These changes allow for flexibilities that could limit drug coverage for those with autoimmune disease and other serious illnesses.

Autoimmune Association Endorses South Dakota Bill Protecting Patient Copay Assistance
Autoimmune Association endorsed on February 3rd SB 154, a bill in South Dakota that would protect patient copay assistance by allowing cost-sharing assistance, including copay coupons from manufacturers to count toward a patient’s deductible and out-of-pocket limits.  At a time when health insurers and pharmacy benefit managers are adopting practices to keep these programs from counting toward a patient’s deductible, Autoimmune Association is proud to endorse legislation to help patients with autoimmune and other related illnesses be able to afford their life-saving medicines.

Autoimmune Association Sends Letter of Support to Nebraska, Arizona, and Arkansas Legislature on Legislation To Protect Patients
Autoimmune Association to the Nebraska, Arizona, and Arkansas legislatures for bills that would provide patient protections by requiring step therapy policies in the state to be based on current evidence and for medical reasons only.

January 2021

Autoimmune Association Endorses Safe Step Act of 2021 with Safe Step Act Coalition
AARDA endorsed the Safe Step Act of 2021, bill that would amend the Employee Retirement Income Security Act (ERISA) to require a group health plan provide an exception process for any medication step therapy protocol.  Autoimmune Association joined the Safe Step Act Coalition in this sign-on letter.

Autoimmune Association Sends Letter of Support to Nebraska Legislature on Legislation To Protect Patients By Requiring Step Therapy Policies Be Based on Medical Reasons
AARDA sent a letter of support to the Nebraska Legislature on January 29 for LB 337, a bill that would provide patient protections by requiring step therapy policies in the state to be based on current evidence and for medical reasons only.

Autoimmune Association Issues Statement on HHS Decision to Delay Implementation of Rebate Rule
AARDA issued a statement on January 29 urging the Biden Administration to act promptly and without further delay on the HHS rule implementing the final rebate rule that would direct PBM savings to patients.  “Many don’t have the luxury of waiting to get access to the treatments they rely upon.  Delaying implementation would have significant negative implications on patients.”

Autoimmune Association Signs On to ACS CAN-Partners Letter to HHS Regarding CMMI Part D Payment Modernization Models and the Six Protected Classes Flexibilities
AARDA signed on to a letter on January 28 submitted by ACS CAN Partners commenting on the six protected classes flexibilities in the Centers for Medicaid & Medicaid Innovation (CMMI) Part D Payment Modernization Model for 2022.  The two new options allow for Part D plan sponsors to limit drug coverage to at least one drug per class, potentially jeopardizing beneficiary access to medically necessary prescription drugs and harming patients with serious illness.

Autoimmune Association Signs Letter Voicing Concerns on Washington Price Controls Bill Incorporating ICER Value Assessment
AARDA signed on to a letter on January 26 voicing concerns regarding SB 5020, a bill that proposed lowering costs by allowing ICER to make value judgements about patients’ quality of life.  Autoimmune Association has been vocal regarding ICER’s use of QALY measurements in their value assessments due to these practices being discriminatory against older individuals or those with chronic diseases and disabilities.

Autoimmune Association Sends Letter to UnitedHealthcare Regarding Remicade Coverage
AARDA sent a letter on January 25 to UnitedHealthcare regarding a mid-year change in coverage for Remicade.  Abruptly changing Remicade from a preferred to non-preferred medicine in coverage mid-year could be disruptive to stable patients and their care.  This action by the plan, and not the patient’s prescriber, is an example of a nonmedical switch.  AARDA’s objection to this action is independent of the medication, and believes it to be inconsistent with the principles laid out by Let My Doctors Decide, a campaign endorsed by Autoimmune Association and many other organizations representing patient groups.

Autoimmune Association Submits Letter to CMS on Most Favored Nation Model Interim Final Rule
AARDA submitted a letter on January 26 commenting on the Most Favored Nation (MFN) Interim Final Rule with Comment Period (IFC) issued by the Centers for Medicare and Medicaid Services (CMS).  Autoimmune Association expressed graves concerns regarding the IFC from both a legal and public policy perspective and urged the agency to rescind the IFC.  For millions of patients who rely on prescription medications covered under Medicare Part B, this “model” under the IFC, could restrict patients’ access to treatments that manage their conditions, forcing them to either forego therapy or to seek treatments in more expensive and potentially less safe provider settings.  This issue, along with procedural, legal, ethical, and other substantive policy concerns force Autoimmune Association to request the IFC to be withdrawn.

Take action for autoimmune disease

Immediate action is often needed when Congress or your state legislature is voting on important legislation. Contact your legislators on critical issues and make your voice heard! This one step can truly make a significant impact.