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

Report on the Experiences of Females of Childbearing Potential in Controlled Distribution Programs for Multiple Myeloma Treatment

1.0 Participant Sociodemographic Profile

An analysis of participant characteristics reveals a specific socioeconomic cohort, highlighting considerations relevant to Sustainable Development Goal 10 (Reduced Inequalities). The study exclusively involved individuals identifying as women, with a diagnosis age ranging from 33 to 50 years.

• Gender: 100% female
• Ethnicity: 67% identified as White (European).
• Marital and Family Status: 73% were married, and 80% had children at home.
• Geographic Distribution: Participants resided across four Canadian provinces/territories and the United Kingdom, with a majority (73%) in medium or large urban centers.
• Socioeconomic Status: A significant majority reported high family income (80%) and post-secondary education (80%).

2.0 Thematic Analysis in the Context of Sustainable Development Goals

The study identifies critical challenges that Controlled Distribution Programs (CDPs) pose to the reproductive health, autonomy, and rights of women with Multiple Myeloma (MM). These challenges directly conflict with several key Sustainable Development Goals (SDGs), particularly those concerning health, gender equality, and institutional accountability.

2.1 Violations of SDG 5: Gender Equality and Reproductive Rights

The findings indicate that CDPs operate in a manner that undermines SDG 5 (Gender Equality) by infringing upon women’s reproductive autonomy and reinforcing systemic gender biases.

1. Paternalistic Program Structure: Participants universally described the CDP approach as “paternalistic.” Rigid, non-negotiable requirements for pregnancy monitoring and contraception were imposed without regard for individual circumstances, such as treatment-induced menopause or pre-existing decisions not to have children. This strips women of their reproductive agency, a core tenet of SDG Target 5.6 (ensure universal access to sexual and reproductive health and reproductive rights).
2. Systemic Distrust of Women: The program’s design implies a fundamental distrust in women’s capacity to manage their own reproductive health. The hyper-vigilant monitoring and mandatory “proof” of non-pregnancy were perceived as demeaning and condescending, treating participants as incapable of making responsible, informed decisions about their bodies and health. One participant noted, “this program is policing a woman’s body,” directly opposing the goal of eliminating all forms of discrimination against women.
3. Coercive “Non-Choice”: Access to life-prolonging medication was contingent on compliance with the CDP’s intrusive requirements. This created a coercive dynamic, forcing women to trade their reproductive autonomy for essential healthcare. Participants described this as a “non-choice,” highlighting an imbalance of power that contravenes principles of gender equality.

2.2 Detrimental Impacts on SDG 3: Good Health and Well-being

The implementation of CDPs was found to have significant negative consequences for participants’ psychosocial health, undermining the objectives of SDG 3 (Good Health and Well-being).

• Exacerbation of Psychological Distress: For women already coping with a MM diagnosis and treatment-induced infertility, the mandatory monthly pregnancy tests served as a painful and constant reminder of their loss of reproductive identity. This practice was described as “putting salt in the wound,” compounding emotional distress and negatively impacting mental well-being.
• Impediments to Timely Treatment: The requirement to have two forms of contraception in place before initiating treatment led to unnecessary delays for some participants. This administrative barrier to accessing timely, life-prolonging care is inconsistent with the goals of ensuring healthy lives.
• Burden of ‘Proof’: The logistical, mental, and emotional load of fulfilling CDP requirements was substantial. Participants reported that the burden of repeatedly disclosing sensitive personal information and navigating the system created significant stress, affecting their quality of life and intimate relationships.

2.3 (Re)claiming Agency and Advocating for Alignment with SDG 16

Despite the challenges, participants demonstrated resilience and actively sought to reclaim their autonomy, advocating for systemic changes that align with SDG 16 (Peace, Justice and Strong Institutions), which calls for effective, accountable, and inclusive institutions.

1. Acts of Resistance and Advocacy: Participants engaged in both subtle and overt acts of resistance, such as challenging their classification as “females of childbearing potential” and questioning program requirements. Many became advocates, participating in research and support groups to drive change.
2. Call for Patient-Centered and Inclusive Institutions: A primary recommendation was for CDPs to abandon the “one-size-fits-all” model in favor of a patient-centered, individualized approach. This reflects a demand for healthcare institutions to be more responsive, accountable, and inclusive of the lived realities of the people they serve.
3. Recommendations for Systemic Change: Participants proposed practical changes to make the programs less intrusive and more respectful of patient autonomy, including:
   • Utilizing at-home pregnancy tests to reduce logistical burdens and increase privacy.
   • Ensuring clear, transparent communication about program criteria and duration from the outset.
   • Evaluating program requirements on a case-by-case basis, considering factors like menopause and personal reproductive decisions.
   • Shifting from a model of mandated compliance to one of empowerment and trust, supporting women to manage their own reproductive health.

Analysis of Sustainable Development Goals in the Article

1. Which SDGs are addressed or connected to the issues highlighted in the article?

• SDG 3: Good Health and Well-being

  The article is fundamentally about health, focusing on women living with multiple myeloma (MM) and their access to life-prolonging medication. It explores how the conditions for accessing this treatment, specifically through Controlled Distribution Programs (CDPs), impact their psychosocial well-being and reproductive health.

• SDG 5: Gender Equality

  This goal is central to the article’s analysis. The research uses a “reproductive justice lens” to examine how the CDP’s policies disproportionately affect women, undermining their reproductive autonomy, agency, and rights. The article describes the program as “paternalistic” and an example of “policing a woman’s body,” which are issues of gender inequality.

• SDG 10: Reduced Inequalities

  The article highlights inequalities in the healthcare system’s approach. The “one-size-fits-all” nature of the CDP fails to account for the diverse realities of women, such as those who are in treatment-induced menopause or have made prior decisions not to have children. This rigid policy creates an unequal burden and outcome for patients based on their individual health status and life choices.

• SDG 16: Peace, Justice and Strong Institutions

  The article critiques the CDP as an institution, pointing out its lack of transparency, accountability, and patient-centricity. Participants report a “lack of clear and transparent communication” and describe the process as not being “patient-focused.” The coercive nature of withholding medication for non-compliance raises questions about justice and the development of effective and accountable institutions.

2. What specific targets under those SDGs can be identified based on the article’s content?

1. SDG 3: Good Health and Well-being

   • Target 3.7: By 2030, ensure universal access to sexual and reproductive health-care services, including for family planning, information and education, and the integration of reproductive health into national strategies and programmes.
     
     Explanation: The article directly addresses this target by discussing the CDP’s mandatory family planning requirements (contraception use). However, it shows a failure in providing adequate “information and education,” as participants reported receiving “limited information related to contraceptive options” and a “lack of timely information on the eligibility criteria.” The program is not integrated with women’s actual reproductive realities.

2. SDG 5: Gender Equality

   • Target 5.6: Ensure universal access to sexual and reproductive health and reproductive rights.
     
     Explanation: This is the most prominent target. The article’s central theme is the loss of reproductive rights and autonomy. One participant explicitly states the program “takes away a woman’s ability to autonomously manage her own reproductive rights.” The feeling of having a “non-choice” in trading reproductive autonomy for life-prolonging medication directly contravenes the principle of ensuring reproductive rights.

3. SDG 10: Reduced Inequalities

   • Target 10.3: Ensure equal opportunity and reduce inequalities of outcome, including by eliminating discriminatory policies and practices.
     
     Explanation: The CDP’s “standardized approach” and “one-size-fits-all” methodology is identified as a problematic practice. It fails to consider individual circumstances, such as a patient being “officially in menopause,” leading to an unequal and unnecessary burden on certain women. This rigid policy can be seen as a discriminatory practice that needs elimination.

4. SDG 16: Peace, Justice and Strong Institutions

   • Target 16.7: Ensure responsive, inclusive, participatory and representative decision-making at all levels.
     
     Explanation: The article critiques the CDP for its lack of participatory decision-making. Participants felt the process was “prescriptive, not a client- or patient-focused process.” The conclusion explicitly calls for “increased engagement of FCBP in the design and implementation of CDPs,” directly aligning with the goal of making decision-making more inclusive and responsive to the people it affects.

3. Are there any indicators mentioned or implied in the article that can be used to measure progress towards the identified targets?

The article provides qualitative evidence that can serve as a basis for measuring progress, rather than quantitative indicators.

1. For Target 5.6 (Reproductive Rights):

   • Implied Indicator: The degree to which women feel they can make their own informed decisions about contraceptive use and reproductive health.
     
     Explanation: The article provides extensive evidence of a negative outcome for this indicator. Participants’ statements that they are “not trusted,” that participation is a “non-choice,” and that the program “takes away a woman’s ability to manage her own reproductive system” are direct measures of the failure to ensure reproductive rights and autonomy.

2. For Target 10.3 (Eliminating Discriminatory Policies):

   • Implied Indicator: Reports from patients about feeling discriminated against or treated unfairly by a health policy.
     
     Explanation: The article is filled with such reports. Participants describe the program’s requirements as “paternalistic,” “demeaning,” “condescending,” and making them “feel like a child.” These feelings are a direct result of the policy’s failure to account for individual situations, thus serving as an indicator of a discriminatory practice.

3. For Target 16.7 (Participatory Decision-Making):

   • Implied Indicator: The extent of patient involvement in the design, implementation, and review of healthcare programs.
     
     Explanation: The article implies this indicator is currently at zero. The call for a “patient-centred, individualized” approach and the observation that there was “no mention of anyone, any women’s input or feelings about any of this” in the program’s justification highlights a complete lack of participatory decision-making. Progress would be measured by the active inclusion of patient voices in policy reform.

4. Table of SDGs, Targets, and Indicators

Source: reproductive-health-journal.biomedcentral.com