Reproductive health care in a post-dobbs landscape for people with sickle cell disease: Clinical practices and challenges from hematologist perspectives Free

Introduction:

The hematology community has recognized the potential impact of the 2022 Dobbs v. Jackson Women's Health Organization decision, which overturned the federal right to abortion, on how their medically complex patients access reproductive and sexual health (RSH) care as a whole. People with sickle cell disease (SCD) have a growing need for full-spectrum RSH care given implications of their disease and disease-modifying treatment on their reproductive goals, including menstrual management, pregnancy care, contraception safety, infertility and fertility preservation. This population also constitutes an underserved, high acuity demographic at risk for reinforced reproductive health disparities that are disproportionately influenced by the Dobbs decision. This study had two primary aims: 1) to evaluate SCD specialists' attitudes and practice patterns for RSH counseling and provision, and 2) to assess whether the Dobbs decision influenced their approaches to RSH care for people with SCD.

Methods:

We conducted semi-structured qualitative interviews with SCD specialists between November 2024 and April 2025. We recruited participants through a national survey and purposive sampling via provider networks; we specifically sampled to over-represent participants from states with restrictive policy environments post-Dobbs as defined by the Guttmacher Institute. Participants were asked about existing practices in addressing reproductive health topics and counseling; models of care in their practice environments; and their impressions on the impact of the Dobbs decision on patient access to RSH care. Interviews were double-coded and data analysis included applied thematic analysis in an iterative process to derive consistent themes.

Results:

Fifteen SCD specialists, including 13 physicians and 2 advanced practice clinicians, were interviewed. Six clinicians were from states with little legislative or policy change in RSH care post-Dobbs, and the remainder were from states with moderate or significant restrictions to RSH services post-Dobbs. With respect to approaches to reproductive health counseling, 3 themes were identified: 1) longitudinal patient-provider relationships that are integral to SCD care models help instill trust in providers in approaching RSH topics, 2) the transition period from pediatric to adult hematology care is a critical and vulnerable time for addressing RSH needs for people with SCD, and 3) SCD providers value referring to primary care and women's health providers who are knowledgeable about SCD-specific concerns, and seek out these providers to establish referral and communication patterns. Most providers described minimal changes in counseling and addressing RSH needs after the Dobbs decision; however, providers in restrictive environments expressed a higher sense of urgency and need for warm handoffs when referring for abortion services. Additionally, the pervasiveness of stigma around all RSH choices, including contraception and abortion, as well as the impact of community and cultural context, greatly influenced how their patients have accessed RSH services before and after the Dobbs decision. Clinicians across political climates cited the compounded and profound influence of intersectional factors, including racism, underinsurance, and other social determinants of health, impacting access to reproductive health care and all health services for individuals with SCD.

Conclusion:

Hematologists are aware of both the unique and universal RSH needs for people with SCD, recognizing the gaps in current care models and advocating for wrap-around and evidence-based RSH care provision for these patients. The Dobbs decision has likely deepened existing barriers in provision of RSH care in places where access was already compromised, particularly for medically complex patients.