Effects of health policy on the health of people with systemic autoimmune and rheumatic diseases

Systemic autoimmune and rheumatic diseases (SARDs) most often occur in women (80% of people with autoimmunity are women). Past research has shown that women with SARDs have a significantly increased risk of adverse pregnancy outcomes compared to the general population. However, little research has investigated health policies, the delivery of healthcare to people with SARDs, particularly around healthcare quality and access to effective treatment, and any associations on their health during reproductive years and the pregnancy and postpartum period. Similarly, little research has investigated the medical decision-making of rheumatologists—specialists in the healthcare of people with SARDs—and health policies. Using multi-method approaches, this study will provide an assessment of health policies and health outcomes and healthcare of reproductive-age women with SARDs. We will qualitatively interview women with SARDs who are or have been pregnant to understand their experiences with fertility and access to pregnancy care. We will interview rheumatologists to assess policy influences on medical decision-making, prescribing practices, and referrals for pregnancy and perinatal care. Using national claims data, we will evaluate pregnancy outcomes among women with SARDs (e.g., severe maternal morbidity), and healthcare-related outcomes among non-pregnant women with SARDs (e.g., prescription medication use). Findings from the study will inform a policy and public health response that enhances patient-centered healthcare for women with SARDs. Project Number: 5R01HD118690-02 | Fiscal Year: 2026 | NIH Institute/Center: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) | Principal Investigator: Mehret Talabi (+1 co-PI) | Institution: UNIVERSITY OF PITTSBURGH AT PITTSBURGH, PITTSBURGH, PA | Award Amount: $668,861 | Activity Code: R01 | Study Section: Special Emphasis Panel[ZRG1-HSS-C(02)M] View on NIH RePORTER: https://reporter.nih.gov/project-details/5R01HD11869002