December 2, 2022

New Autoimmune Agenda Highlights Policy Measures to Improve Outcome for Women Living with Autoimmune Diseases

black woman microscope

Autoimmune diseases and conditions, a group of more than 80 chronic diseases that develop when the immune system mistakenly attacks the body’s own healthy organs, tissues, and cells, affect more than 23.5 million people in the United States, with some estimates ranging up to 50 million people. However, women are disproportionately affected; 80 percent of autoimmune patients are women, though gender ratios may differ across different autoimmune diseases.

Managing an autoimmune disease can be complex for women, both as patients and caregivers. In addition to women representing the majority of patients diagnosed with autoimmune diseases, the burden of disease is also arguably greater, as discussed by SWHR in a 2022 commentary, due to “gender and cultural influences that have psychosocial effects and create expectations of caregiving for children, partners, and parents who may suffer from these chronic conditions.”

Among the areas of concern related to women with autoimmune diseases are that the path to diagnosis can be long (the Autoimmune Association says that the average time to autoimmune diagnosis is three to four years); there can be lengthy wait times to see specialty care providers, such as rheumatologists; and insurance policies can affect access to prescribed medications.

Each of these points was expounded upon during an interdisciplinary roundtable conversation hosted by the Society for Women’s Health Research (SWHR) in August 2022, which convened policy experts, researchers, clinicians, and patient advocates. During this roundtable, working group members discussed policy needs and opportunities that could shape health and quality of life outcomes for women with autoimmune diseases and conditions.

In response to that conversation and in light of the growing prevalence of autoimmune diseases and conditions in the United States and their impact on women, SWHR this month launched the policy agenda, Improving Outcomes for Women with Autoimmune Diseases and Conditions: A Call to Action. The policy agenda, which covers research needs and opportunities; education, awareness, and advocacy; clinical care needs; and coverage and access, is intended to serve as a roadmap for policymakers. Through this policy agenda, SWHR hopes to bring awareness to policies changes that have the potential to improve health and quality of life outcomes for women impacted by autoimmune diseases and conditions.

Read the policy agenda online here.

For more autoimmune policy resources from SWHR, visit the following: