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Setting the Stage for 2019

Autoimmune Association President and Executive Director, Virginia Ladd, met with U.S. Senator Gary Peters of Michigan this week to discuss goals for increasing education and awareness, investing in research, and improving access to health care for people with autoimmune diseases.

This meeting was one of ten in-person conversations with Members of Congress and congressional staff to encourage support for public policies important to the autoimmune community. Visits reinforced our priorities in the 115th Congress’ final weeks and set the stage for 2019. Rich Hodge, Board Member and Advocacy Committee Chair, delivered AARDA’s policy message in several meetings, as Autoimmune Association steps-ups efforts to directly engage law-makers in our issues; nearly forty congressional offices received visits and/or materials in recent days.

 

AARDA’s Legislative Priorities for 2018-2019

Education & Awareness

 

  • To promote awareness and education of autoimmune disease and its impact on an estimated 50 million Americans, their families, employers, and the nation’s healthcare system.
    • Authorize and allocate funds in FY 2020 for research programs and dissemination of findings on current incidence and prevalence of autoimmune disease, and related personal/system health, financial, and social impact.

Research

 

  • To significantly increase funding for research, diagnosis and treatment, including opportunities to increase appropriations for autoimmune research at the Department of Defense’s Congressionally Directed Medical Research Program and at the NIH.

 

  • Include “Autoimmune Diseases” as a topic areas for funding in FY 2020 Department of Defense Appropriations Legislation for CDMRP, with at least $3 million designated for peer reviewed programs supporting research relevant to the spectrum of autoimmune diseases.

 

  • Increase DOD CDMRP appropriations in FY 2020 for currently funded peer reviewed programs conducting critical research on specific autoimmune diseases, including lupus, IBD, rheumatoid arthritis, and scleroderma.

 

  • Increase FY 2020 appropriations for the National Institutes of Health to sustain and grow investment in health science and innovation, with greater funding of biomedical and other research that directly improves understanding, diagnosis, and treatment of persons with autoimmune disease.

 

Access

 

  • To improve access to health services, medicines, and support for people living with autoimmune diseases, including through more timely and effective diagnosis, increased availability/affordability to innovative medicines, reducing health insurance plan practices that restrict access to medicines and care prescribed by physicians that undermine patient health and function.
    • Increase opportunities for patient education and engagement in FDA, CDC and other agency deliberations and decisions on issues affecting persons with autoimmune disease.
    • Include demonstration projects and funds in FY 2020 to identify promising models for improving diagnosis and treatment, including the role of integrated care, autoimmune disease registries, clinical trial participation, and, health/economic effects of step therapy and other plan practices.

 

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