Endometriosis and Disability: Analysis of Federal Court Appeals of Social Security Disability Insurance and Supplemental Security Income Claims by Individuals Suffering From Endometriosis

Martha Grace Cromeens; Kathleen Knafl; Whitney R Robinson; Erin T Carey; Zakiya Haji-Noor; Suzanne Thoyre

doi:10.1016/j.whi.2023.11.008

Endometriosis and Disability: Analysis of Federal Court Appeals of Social Security Disability Insurance and Supplemental Security Income Claims by Individuals Suffering From Endometriosis

Womens Health Issues. 2024 Feb 27:S1049-3867(23)00209-8. doi: 10.1016/j.whi.2023.11.008. Online ahead of print.

Authors

Martha Grace Cromeens¹, Kathleen Knafl², Whitney R Robinson³, Erin T Carey⁴, Zakiya Haji-Noor⁵, Suzanne Thoyre²

Affiliations

¹ University of North Carolina, School of Nursing, Chapel Hill, North Carolina; Indiana University School of Nursing, Indianapolis, Indiana. Electronic address: cromeens@uw.edu.
² University of North Carolina, School of Nursing, Chapel Hill, North Carolina.
³ University of North Carolina, Carolina Population Center, Chapel Hill, North Carolina; Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, North Carolina.
⁴ Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, North Carolina; Department of Obstetrics and Gynecology, University of North Carolina, Chapel Hill, North Carolina.
⁵ Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, North Carolina.

PMID: 38418360
DOI: 10.1016/j.whi.2023.11.008

Abstract

Background: Endometriosis, a chronic noncancerous gynecologic condition commonly characterized by disruptive physical and psychosocial symptoms, can be disabling. Individuals in the United States with endometriosis who are unable to work before retirement age can apply for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI). Given the multi-step process of disability review, it is important to better understand how disability decisions are made. This study aimed to examine approaches and rationales of U.S. federal appeals courts reviewing SSDI and/or SSI claims involving endometriosis-related issues of appeal.

Methods: We searched Westlaw and Nexis Uni records, available as of January 2021, for federal appeals of SSDI and SSI claims including endometriosis as an impairment. Two independent reviewers screened full-text cases and extracted data. Framework Analysis was applied to courts' rationales regarding endometriosis-related issues of appeal.

Results: Eighty-seven appeals addressed an endometriosis-related issue. Three themes-evidence, treatment, and time-were identified across the decisions. The courts' discussions across themes exposed rationales and evidentiary requirements that posed challenges for claimants with endometriosis. The courts found subjective reports of symptoms insufficient evidence of impairment and positive responses to treatments to indicate cures or prevent claimants from demonstrating the necessary continuous 12 months of impairment. Some courts expected claimants to use treatments such as contraception or hysterectomy without addressing the risks of such treatments or the fact that they might have been counter to claimants' needs and preferences.

Conclusions: Individuals with endometriosis face evidentiary obstacles and common misconceptions about disease, diagnosis, and treatment in disability claims. SSDI and SSI endometriosis claims are systematically disadvantaged, particularly among those without access to care. The health care, policy, and legal systems can leverage the findings in this study to create a more equitable disability application and review system for those with chronic pain conditions such as endometriosis.