Considering The Costs Of Human Uterusallotransplantation: A Survey Of Potential Candidates
Helen Xun, Darya Fadavi, BS, Halley Darrach, BS, Pooja Yesantharao, BS, MA, Nicole Fischer, BS, Franca Kraenzlin, MD, Justin M. Sacks, MBA, MD, FACS.
Johns Hopkins School of Medicine, Baltimore, MD, USA.
PURPOSE: Uterus transplantation (UTx) allow women with uterine factor infertility (UFI) to bear their own children. Led by an interdisciplinary team of obstetrician and gynecologists, transplant surgeons, and plastic surgeons, the protocol for UTx has been rapidly evolving, with over 60 uterus transplants completed to date, and 15 babies born. Currently, most research protocols provide coverage for the transplantation itself, but do not cover in vitro fertilization and associated costs. As UTx become more widely adopted by institutions and transitions from trial to standard of care, concerns about financial coverage and willingness of the patients to pay out of pocket should be explored. Our study is the first to investigate the financial willingness of women with UFI to undergo UTx, in the context of their attitudes, perspectives, and willingness to undergo the procedure in general.
METHODS: In an IRB approved study, anonymous questionnaires including education about UTx were distributed electronically to women who were diagnosed with UFI at The Johns Hopkins Hospital between the years 2003-2018. Questions covered demographics, medical history of UFI, knowledge of and attitudes towards UTx, financial willingness for UTx, and insurance coverage.
RESULTS: 31 women with UFI were identified, resulting in 10 completed surveys. Average age was 31.7 ± 6.31, and average age of diagnosis was 19.6 ± 4.75; all 10 surveyed women had congenital UFI. 80% of women agreed that UTx should be an option for women with UFI, and 90% of women would consider receiving a UTx (Figure 1). When asked to rank risks related to UTx in order of personal importance, only one woman ranked herself most important; the other women ranked fetus and donor as more important. The average annual household income was $99,500 ± 44,578.6, with a mode of more than $150,000 (30%), which is statistically significantly higher than the national average income of $48,150 (p<0.0001). All women had health insurance (70% had private insurance), and 90% of the women believed that UTx should be covered by health insurance.
CONCLUSION: We surveyed women with UFI and found that the majority are willing to have UTx and ranked their safety as the least important, indicating a high willingness to undergo the procedure despite associated risks. Consequently, woman with UFI should be considered a vulnerable population, requiring special considerations for UTx informed consents. Furthermore, it is surprising that the women with UFI had a higher than national average income, and all had insurance, indicating financial means of supporting UTx. However, given the context of potential vulnerability, regulations and guidelines should be placed to protect this population. Ethical concerns need to be addressed before, during and after potential transplantation. This would include transparency in expected costs, adequate informed consent, and counseling on realistic expectations and outcomes of the procedure.
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