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Autoimmune Association in Action

December 2022

Autoimmune Association Leads Sign-On Letter to Establish Office of Autoimmune Disease
Autoimmune Association sent a letter, co-signed by 36 patient organizations, to the House and Senate appropriation committees calling upon them to pass a final appropriations bill that includes a recommendation that an Office of Autoimmunity be established within the National Institutes of Health. This office would be critical in developing a comprehensive, transparent, and strategic approach to understanding autoimmune disease and funding additional research.

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.

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.