Expecting more: the case for incorporating fertility services into comprehensive sickle cell disease care

• Type of Material: Article
• Authors: Lydia H Pecker, Johns Hopkins University; Eugene Oteng-Ntim, King’s College London; Alecia Nero, UT Southwestern Medical Center, Dallas; Sophie Lanzkron, Johns Hopkins University; Mindy S Christianson, Johns Hopkins University; Teonna Woolford, Sickle Cell Reproductive Health Education Directive, MD; Lillian R Meacham, Emory University; Adrienne D Mishkin, Columbia University
• Language: English
• Date: 2023-02-27
• Publisher: ELSEVIER SCI LTD
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2022 Elsevier Ltd. All rights reserved.
• Final Published Version (URL): http://dx.doi.org/10.1016/S2352-3026(22)00353-2
• Title of Journal or Parent Work: LANCET HAEMATOLOGY
• Volume: 10
• Issue: 3
• Start Page: E225
• End Page: E234
• Grant/Funding Information: LHP declares grant funding from NIH/NHLBI K23HL146841 and U01 HL156620-01, the American Society of Hematology, Doris Duke Charitable Foundation Grant #2020147, and the Mellon Foundation, consulting fees from Global Blood Therapeutics and Novo Nordisk, support for meeting attendance from the American Society of Hematology and the Hemostasis and Thrombosis Research Society, serves on the CRESCENT DSMB and is an advisor to the Sickle Cell Reproductive Health Education Directive, serves in a leadership role at the Foundation for Women and Girls with Blood Disorders’ Sickle Cell Disease Learning Action Network and on the American Society of Hematology’s Maternal Health Working Group. AN declares grant funding from Global Blood Therapeutics, consulting fees from Global Blood Therapeutics, Bluebird Bio, Novartis and Dispersol, received honoraria from the American Society of Pediatric Hematology, support for meeting attendance from the Foundation for Women and Girls with Blood Disorders (FWGBD), serves on DSMB for Editas Medicine, the PIVOT Trial and the PUSH UP Trail, and serves in a leadership role at the Foundation for Women and Girls with Blood Disorders’ Sickle Cell Disease Learning Action Network. SL declares grant funding from PCORI, HRSA, NIH and CHRC MD, consulting fees from Novartis, Pfizer, Bluebird Bio, Novo Nordisk, and Magenta, participates in DSMBs for OSMB SPARCO (NIH) and on an ad hoc basis for ASBMT, serves the Vice President of the National Alliance for Sickle Cell Centers, and holds stock in Pfzier and Teva. TW declares consulting fees from Agios Pharmaceuticals, Novo Nordisk, Fulcrum, Global Blood Therapeutics and Bluebird Bio, support for travel provided by Agios Pharmaceuticals. ADM declares honoraria from PhenX and support from the Wharton Foundation. LRM, EON, MSC have no conflicts of interest to declare.
• Keywords: Science & Technology; WOMEN; ACCESS; HYDROXYUREA; CHILDREN; TRANSPLANTATION; Life Sciences & Biomedicine; Hematology; VIEWS; DOCTORS; PRESERVATION
• Research Categories: Health Sciences, Obstetrics and Gynecology; Health Sciences, Oncology; Health Sciences, Medicine and Surgery

Abstract

Assisted reproductive technologies (ART) are not yet systematically available to people with sickle cell disease or their parents. Fertility care for these groups requires addressing sickle cell disease-associated infertility risks, fertility preservation options, pregnancy possibilities and outcomes, and, when needed, infertility treatment. People with a chance of having a child with sickle cell disease can use in-vitro fertilisation with preimplantation genetic testing to conceive a child unaffected by sickle cell disease. Also, parents of children with sickle cell disease can use this technology to identify embryos to become potential future matched sibling donors for stem cell transplant. In the USA, disparities in fertility care for the sickle cell disease community are especially stark. Universal screening of newborn babies' identifies sickle cell disease and sickle cell trait, guidelines direct preconception genetic carrier screening, and standard-of-care fertility preserving options exist. However, potentially transformative treatments and cures for patients with sickle cell disease are not used due to iatrogenic infertility concerns. In diversely resourced care settings, obstacles to providing fertility care to people affected by sickle cell disease persist. In this Viewpoint, we contend that fertility care should be incorporated into the comprehensive care model for sickle cell disease, supporting alignment of treatment goals with reproductive life plans and delivering on the promise of individualised high-quality care for people with sickle cell disease and their families. We consider the obligation to provide fertility care in light of medical evidence, with acknowledgment of formidable obstacles to optimising care, and powerful historical and ethical considerations.