Introduction:

Reproductive health services are increasingly recognized as an important dimension of comprehensive sickle cell disease (SCD) care. People with SCD have unique reproductive health needs due to disease-associated complications such as priapism, menstrual pain and blood loss, infertility risks, contraception safety and high-risk pregnancy. People with SCD are especially prone to disparate access to reproductive services given existing demographic and structural barriers to care; changing policies and legislation affecting provision of these services nationally may deepen these inequities. This study aimed to define currently available resources and practice models for reproductive health service delivery at member sites of the National Alliance for Sickle Cell Centers (NASCC).

Methods:

Between July 2024 and April 2025, we distributed a survey to NASCC site directors. The survey included questions describing demographics of the patient population at the NASCC site and identifying available reproductive health sub-specialty services including urology, obstetrics and gynecology, reproductive endocrinology and infertility (REI), maternal-fetal medicine (MFM), adolescent medicine, complex family planning, and genetics. We also asked about clinic-specific reproductive health policies, including availability of contraception and fertility preservation services and nursing support, as well as barriers to addressing patients' reproductive healthcare needs.

Results:

We received responses from 44 of 88 NASCC recognized SCD centers. The sample distribution reflected the regional locations of all NASCC sites, with 45% located in the Southeast U.S. Responding sites reflected national realities for people with SCD: 86% of sites reported that most of their patients are publicly insured, and 94% reported that most of their patients are non-White. Most sites reported internal or external referral pathways for general gynecology (100%), obstetrics (91%), MFM (93%), REI (86%), urology (98%) and genetic counseling (82%); only 20% of sites had a referral pathway to complex family planning.

With respect to fertility preservation services, nine sites did not offer any fertility preserving interventions, and under 50% of sites offered standard fertility preserving methods. Many sites listed insurance concerns as a primary limitation for providing these services. The most common contraception services offered at NASCC clinics included depot medroxyprogesterone acetate (44%), followed by progesterone-only pills (30%), hormonal intrauterine devices (27%), and combined hormonal contraceptive pills (25%).

Common barriers to providing comprehensive reproductive health services at NASCC sites included gaps in care for pregnant young adults with SCD; time and clinic policy constraints; payment and insurance issues particularly related to infertility/fertility preservation care; limited referring provider availability; and lack of addressing male sexual health needs.

Conclusion:

This study highlights existing resources for reproductive health services at NASCC sites as well as identifies key deficiencies in provision of full-spectrum reproductive health care. Specifically, inconsistent and sparse fertility preservation services as well as lack of engagement with complex family planning posit opportunities to meet diverse and dynamic reproductive health goals for medically complex patients. Our findings inform innovative, multidisciplinary approaches to effective reproductive health care service delivery, particularly in the context of a changing national landscape for accessing reproductive health services.

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2025
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