Table 2.
Approaches to address fertility care for haemoglobinopathy trait carriers and people with sickle cell disease in the USA require coordinated actions by institutions and organisations
| Actions to address, clinical care, research and access gaps | ||
|---|---|---|
| Screening for hemoglobinopathy traits | CDC, USPTF, ACOG, ASH, AAP | Universal pre-conception genetic counseling |
| Opportunity for hemoglobinopathy testing | ||
| Clinical Care | NHLBI/NIH, ASH, ACOG, ASRM, AAP, ASPHO, SMFM, NASCC | Comprehensive reproductive care guidelines |
| Systematic approach to fertility and preconception counseling, evaluations, referrals | ||
| Research | CDC ART Surveillance & Research Team, SART | Create ART Surveillance Systems to identify SCD-related use & define outcomes for IVF+PGT in couples without infertility diagnosis |
| NIH (NHLBI, NICHD, ORWH), ASH, ASRM, AUA | Create RFAs for high-quality clinical fertility research in SCD | |
| Policy Changes | CMS, HRSA, State and Federal Lawmakers | Fund comprehensive SCD care |
| Fund or mandate coverage for patients anticipating iatrogenic infertility | ||
| Comprehensive, non-coercive genetic counseling and ART coverage for people with SCD and hemoglobin carrier couples | ||
ACOG: American College of Obstetrics and Gynecology, ASH: American Society of Hematology, ASPHO: American Society of Pediatric Hematology & Oncology, ASRM: American Society of Reproductive Medicine, ART: Artificial Reproductive Technology, AUA: American Urological Association, CDC: Centers for Disease Control and Prevention, CMS: Centers for Medicaid and Medicare, HRSA: Health Resources and Services Administration, IVF++PGT: In Vitro Fertilization + Preimplantation Genetic Testing, NICHD: National Institute of Child Health and Human Development, NIH: National Institutes of Health, NHLBI: National Heart, Lung and Blood Institute, ORWH: Office for Research in Women’s Health, NASCC=National Alliance for Sickle Cell Centers, RFA: Research Funding Announcement; SART: Society for Assisted Reproductive Technologies, SMFM, Society for Maternal and Fetal Medicine, USPTF: United States Preventive Task Force