Congresswoman Nikema Williams Calls on Secretary Robert F. Kennedy to Take Action on Endometriosis Diagnosis and Care

Resources / Press Share on Congresswoman Nikema Williams Calls on Secretary Robert F. Kennedy to Take Action on Endometriosis Diagnosis and Care Sep 01, 2026 Expanding Access to Health Care Press WASHINGTON, D.C. – Congresswoman Nikema Williams (GA-05 ) sent a congressional oversight letter to U.S. Department of Health and Human Services Secretary Robert F. Kennedy inquiring about what action the Department of Health and Human Services is taking to improve diagnosis and access to care for individuals living with endometriosis. Congresswoman Nikema Williams wrote: “Endometriosis is a chronic, systemic, inflammatory disease affecting millions of Americans and an estimated 200 million people worldwide. Despite its increasing prevalence and substantial health burden, patients continue to face prolonged diagnostic delays, limited access to knowledgeable providers, inconsistent insurance coverage, and barriers to evidence-based care. These barriers contribute to unnecessary suffering, increased healthcare costs, disease progression, and poorer health outcomes.” “As scientific knowledge continues to evolve, we respectfully seek information regarding how the Department of Health and Human Services is working to improve diagnosis and access to care for individuals living with endometriosis.” In the letter, Congresswoman Nikema Williams requested answers to the following questions regarding diagnosis and access to care: What steps has HHS taken to reduce diagnostic delays for individuals with endometriosis? Has HHS established measurable goals or benchmarks to improve timely diagnosis? Has HHS evaluated the downstream consequences of prolonged diagnostic delay, including disease progression, infertility, repeated surgeries, chronic pain, mental health conditions, organ dysfunction, and preventable healthcare utilization? Has HHS assessed the economic impact of delayed diagnosis and inadequate treatment, including healthcare utilization, productivity loss, disability, and workforce participation? What initiatives are underway to promote earlier diagnosis through evidence-based imaging, clinical evaluation, and referral pathways? Has HHS evaluated disparities in diagnosis among adolescents, racial and ethnic minority populations, rural communities, and medically underserved populations? What actions has HHS taken to improve recognition of endometriosis in adolescents, given evidence that symptoms can begin in childhood and delayed intervention may contribute to disease progression and long-term disability? Congresswoman Nikema Williams also requested answers to the following questions regarding coding and reimbursement: Has HHS evaluated whether existing coding accurately captures the full range of endometriosis presentations, including multi-organ disease and multidisciplinary surgical management? Has HHS evaluated whether current ICD-10 and CPT coding adequately reflects the complexity of diagnosing and treating endometriosis? What steps has HHS taken to ensure adequate reimbursement for endometriosis diagnostics, including exploratory surgery when clinically appropriate? What steps has HHS taken to ensure adequate reimbursement for the treatment of endometriosis, including complex excision surgery? Has HHS evaluated whether current reimbursement policies adequately support multidisciplinary care frequently required for bowel, bladder, ureteral, diaphragmatic, and thoracic endometriosis? Has HHS evaluated barriers created by prior authorization requirements for advanced imaging, pelvic floor physical therapy, fertility preservation, multidisciplinary surgery, and chronic pain management? What actions has HHS taken to improve insurance coverage for evidence-based diagnosis and treatmentof endometriosis? Will HHS work with CMS and relevant stakeholders to improve coding and reimbursement for evidence-based endometriosis care? The letter was co-signed by Rep. Eleanor Holmes Norton (DC At Large), Rep. Yvette D. Clarke (NY-09), Rep. Nydia M. Velázquez (NY-07), Rep. Debbie Dingell (MI-06), Rep. Rashida Tlaib (MI-12), Rep. Joyce Beatty (OH-03), Rep. Yassamin Ansari (AZ-03), Rep. Emily Randall (WA-06), Rep. Bonnie Watson Coleman (NJ-12), Rep. Lauren Underwood (IL-14), and Rep. Sydney Kamlager-Dove (CA-37). Read the full letter to Secretary Robert F. Kennedy here . Share on