Reproductive autonomy of women living with multiple myeloma participating in a pregnancy prevention program

TL;DR

This study explores how pregnancy prevention programs for women with multiple myeloma affect their reproductive autonomy and rights.

Contribution

The paper introduces a feminist reproductive justice perspective to analyze the impact of controlled drug distribution programs on women's reproductive autonomy.

Findings

Controlled distribution programs impose significant burdens on women's reproductive health and autonomy.

Participants perceived these programs as paternalistic and distrustful of women's decision-making.

Women advocated for changes to reclaim their reproductive agency.

Abstract

Multiple myeloma is an incurable hematologic cancer that primarily affects older adults. Females of childbearing potential represent a small but uniquely affected proportion of the multiple myeloma population. The immunomodulatory agents (thalidomide, lenalidomide and pomalidomide) are highly effective treatments in improving prolonged periods of deep remission and long-term survival in Multiple Myeloma, is dispensed through controlled distribution programs that require pregnancy monitoring for females of childbearing potential to reduce the risk of fetal exposure. There is limited understanding of the impact of pregnancy prevention and monitoring measures on the reproductive health, autonomy, and rights of women living with multiple myeloma.

This critical qualitative study is informed by a descriptive methodological approach, and a feminist reproductive justice theoretical framework informed the data analysis and interpretation. We employed purposive sampling to identify and conduct interviews with females of childbearing potential, living with multiple myeloma, that have experience participating in a controlled distribution program.

This study reflects the experiences of 15 females of childbearing potential living with MM, all of whom identified as women and ranged in age from 33–50 at diagnosis. Participants were situated in provinces across Canada, with most identifying as White, married, and of higher socioeconomic status. Findings illuminate a multitude of ways in which controlled distribution programs imposed threats to the reproductive health and autonomy of these women. Although many participants acknowledged the importance of preventing fetal exposure to teratogenic medications, the prescriptive and controlling nature of hyper-vigilant pregnancy monitoring programs and practices imposed significant burden and constraints on females of childbearing potential. Key analytic themes highlight the perceived paternalistic nature of controlled distribution programs, the systemic distrust of females of childbearing potential, and women’s actions and advocacy efforts to (re)claim their reproductive agency.

Participant-informed adaptations to the design and delivery of pregnancy monitoring and prevention requirements in existing controlled distribution programs to promote the reproductive autonomy and agency of females of childbearing potential are both necessary and feasible. Key recommendations include increased provision of timely, comprehensive information and education, psychosocial support, as well as modifications to programs and regulatory bodies to recognize women as trustworthy and capable of autonomous, reproductive health decision-making.

The online version contains supplementary material available at 10.1186/s12978-025-02182-z.

Multiple myeloma is an incurable type of blood cancer that primarily affects older adults. Females of childbearing potential represent a small but uniquely affected proportion of the multiple myeloma population. Recent advances in treatment have contributed to long-term improvements in survival yet pose potential risks for fetal exposure among females of childbearing potential. Treatments for multiple myeloma, particularly thalidomide and its derivatives lenalidomide and pomalidomide (otherwise known as immunomodulatory agents (IMiDs)), have led to the establishment of controlled drug distribution programs to prevent fetal exposure, requiring pregnancy monitoring for females of childbearing potential. However, there is limited understanding of the impact of pregnancy prevention and monitoring measures on the reproductive health, autonomy, and rights of women living with multiple myeloma. In this descriptive qualitative study, informed by feminist reproductive justice theory, we conducted interviews with 15 females of childbearing potential living with multiple myeloma that have experience participating in a controlled distribution program. Our findings demonstrate that although participants acknowledged the importance of preventing fetal exposure to IMiDs, controlled distribution programs represent a significant burden and threat to individuals’ reproductive health and autonomy. Themes produced and explored in this paper highlight the perceived paternalistic nature of controlled distribution programs, distrust of females of childbearing potential, and women’s actions and advocacy towards reclaiming their reproductive agency. Participant-informed adaptations to the design and delivery of pregnancy monitoring and prevention requirements in existing controlled distribution programs are provided.

The online version contains supplementary material available at 10.1186/s12978-025-02182-z.

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