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Addressing Barriers to Care for Women with Autoimmune Diseases and Conditions

August 4 @ 10:00 am - 3:30 pm EDT

Autoimmune diseases are a group of more than 80 chronic and often disabling diseases that develop when the immune system mistakenly attacks the body’s own healthy organs, tissues, and cells. The rates of autoimmune diseases and conditions in the United States are rising—and women are disproportionately affected. Specifically, 80% of patients diagnosed with autoimmune disorders are women, though gender ratios differ among individual diseases. Sex differences also influence symptom manifestation and severity. While the causes of many autoimmune diseases remain unknown, sex chromosomes and hormonal changes play an important role. 

Generally, autoimmune diseases cannot be cured, so treatment focuses on managing symptoms and slowing the progression and negative impacts of the disease. Finding an effective treatment quickly is key for improving not only health outcomes but also quality of life. For patients – who experience different types and severity of symptoms, responses to treatments, and have different needs – delays in care can be devastating, resulting in disease progression and higher costs of time. Identifying the barriers to coverage and improving policies to better reflect patient needs could have a significant effect on health and quality of life outcomes. 

 The Society for Women’s Health Research (SWHR) is the nation’s thought leader in promoting research on biological sex differences in disease and improving women’s health through science, policy, and education. SWHR brings attention to diseases and conditions that exclusively affect women or that disproportionately or differently affect women. We have a 33-year history of bringing fresh thinking and thought leadership to improving women’s health and communicating knowledge to diverse stakeholders. Our science and policy roundtables and interdisciplinary networks have surveyed the current state of research in women’s health, examined research gaps, and published findings as peer-reviewed articles, patient and clinician toolkits, position statements, and other materials for diverse audiences. 

SWHR convened an interdisciplinary Autoimmune Policy Working Group of policy experts, researchers, clinicians, and patient advocates for a closed, roundtable meeting on August 4, 2022. During the roundtable, the Working Group discussed policy needs and opportunities as they relate to women’s autoimmune and immune-mediated diseases and conditions across the lifespan. 

Details

Date:
August 4
Time:
10:00 am - 3:30 pm EDT
Event Categories:
, , ,

Organizer

SWHR

Objectives

  • Consider health care policies and access barriers around autoimmune diseases, based on the science, to improve patient outcomes 
  • Identify current health disparities for women, subpopulations of women, and underserved populations with autoimmune diseases and conditions and identify whether current policies and practices exacerbate those disparities
  • Review the state of the science and explore the best means to further research and develop more effective outreach, diagnosis, and treatment adherence strategies
  • Develop educational materials to raise awareness about autoimmune and immune-mediated diseases among policy decision-makers as well as highlight barriers to access and coverage and offer recommendations on patient-centered health care policies for women with autoimmune diseases. 

Roundtable Participants

Nicole Boschi, Director of Regulatory Affairs, National MS Society

Sarah Buchanan, Director of Federal Government Relations & Health Policy, National Psoriasis Foundation

DeAnna Clark, Patient Advocate

Betty Diamond, MD, Director of the Institute of Molecular Medicine, Northwell Health’s Feinstein Institute for Medical Research

Quardricos Driskell, Vice President, Public Policy and Government Affairs, Autoimmune Association

Caren Heller, MD, MBA, Chief Scientific Officer, Crohn’s and Colitis Foundation

Anna Hyde, Vice President of Advocacy and Access, Arthritis Foundation

Presha Kardile, Patient Advocate

Sonia Manocha, Rheumatology Division, Allegheny Health Network

Carolyn Serraino, Director of Research, Global Autoimmune Institute

Sonia Sharma, Associate Professor, Center for Autoimmunity and Inflammation, Center for Cancer Immunotherapy, La Jolla Institute for Immunology

Sandy Werness, Executive Director, Global Autoimmune Institute

Learn more about Autoimmune Care

This Utilization Management Policies and Autoimmune Diseases fact sheet by SWHR explores autoimmune and immune-mediated diseases care options and related policy affects on provider and patient experiences. Download your copy today.

DOWNLOAD THE FACT SHEET

Sponsor

SWHR’s Autoimmune Program is supported by an educational sponsorship from Horizon Therapeutics. SWHR maintains editorial control and independence over educational content.