New Fibroids Policy Must Be Part of the Black Maternal Health Agenda
Although fibroids are benign tumors, pervasive atrocities of medical bias and racism have consistently resulted in negative maternal health outcomes for Black women who experience them, including late detections of diagnoses, increased rates of surgery-related mortality, and increased rates of hysterectomies. These conditions are unacceptable: Black women deserve access to high-quality and equitable health care for all maternal health needs, including the treatment of fibroids. Increased education and advocacy on fibroids prevention, symptoms, treatment, and care— as well as adequate insurance coverage—are necessary to improve this aspect of Black women’s maternal health and fertility. This piece will strengthen discussions of Black women and fibroids and the U.S. maternal health crisis, by describing the severity of the condition for Black women in particular, and by presenting and analyzing the socioeconomic justice and policy reforms necessary for improved coverage and care.
How a Fibroids Diagnosis Changes Black Women’s Lives
Fibroids, also known as leiomyomas or myomas, are a kind of tumor whose growth is often accelerated by development of the estrogen and progesterone hormones along the uterine lining. They can be any size, and develop singularly or in clusters. In addition to prevalence, treatment, and mortality disparities with cardiovascular disease and breast cancer, Black women also produce fibroids at an increased rate, due to race and heredity. Although weight and diet are addressed with fibroids treatment plans, there are no clear-cut causes for fibroids development. Women of childbearing ages are most likely to develop fibroids, and while some women produce fibroids during pregnancy that shrink naturally post-delivery, other women will undergo a variety of medical procedures to shrink and/or remove fibroids, and alleviate severe menstruation, in order to improve their likelihood of successful fertility. The disproportionate impact of severe, symptomatic fibroids and fibroids treatment on Black women often translates into increased rates of Black women experiencing invasive fibroids removals, pelvic pain, pain during intercourse, tumultuous fertility, decreased mental health, debilitating menstruation, bloating, inconvenienced work and relationships, frequent urination, and even constipation.
Some Black women are ultimately unsuccessful with natural conception as a result of fibroids. Additionally, risks of delivering babies in breech, deferring to cesarean sections, and delaying in labor are all increased by the presence of fibroids. The maternal health crisis persists as a result of the former. As Black women of all ages, sexualities, and identities across the world have documented, there can be overwhelming biological impacts, but also socioeconomic, emotional, and interpersonal implications for women experiencing fibroids. Black women with fibroids of all socioeconomic statuses and education levels suffer from a lack of fibroids relief because of non-comprehensive and costly treatment plans, minimal insurance coverage for scans, and harmful, invasive removals.
Black women with fibroids of all socioeconomic statuses and education levels suffer from a lack of fibroids relief because of non-comprehensive and costly treatment plans, minimal insurance coverage for scans, and harmful, invasive removals.
There are ongoing medical implications of the distinctly traumatic medical experiences of Black women. Although it appears that Black women with a higher socioeconomic standing are more aware of fibroids removal and treatment alternatives, most Black women are still primarily influenced when making decisions regarding fibroids by their clinician’s recommendations. The relationship between clinicians and Black women’s medical decision-making is a fraught one: Black women express feeling dismissed and not believed by doctors, a mistrust borne of a long history of medical complications and/or death of Black mothers and their children. This reality underlines the maternal health crisis for Black women in the United States. Examples of negative clinician influence include encouragement of invasive fibroids removals, or encouragement of delaying fibroids removals, both problematic recommendations. In either of these cases, the perspective of the clinician may be more reflective of their own bias, rather than of their patient’s best interest. The corresponding relationship between Black women’s health decision-making and clinician influence indicates why a medical model consisting of cultural competency education, patient-centered care, and increasing the prevalence of clinicians who resemble the communities they serve is imperative for equitable healthcare outcomes.
Black women who desire to conceive and birth their children deserve the benefit of learning all their options, and thus full agency in preventing fertility complications. Instead of being recommended myomectomies (surgical removals of fibroids) and hysterectomies (surgical removals of the uterus) again and again, Black women deserve to experience support amidst their most vulnerable and personal medical experiences. The lack of fibroids-related policy, research, and funding remain injurious and deplorable. The undeniably distinct impact of fibroids on Black women must be addressed as a maternal health disparity.
Figure 1
Research, legislation, education, and advocacy for improved fibroids removal, care, and treatment remain almost stagnant. This is in spite of the efforts of Representative Yvette Clark, who has proposed increased public education, research, culturally competent clinical care, and Medicaid coverage for treatment through H.R. 6383, the Uterine Fibroid Research and Education Act of 2020. Before this proposal, the only legislation to reach Congress dates back twenty years—a bill presented by Congresswoman Stephanie Tubb Jones of Ohio for a chronic conditions database and increased funding. To date, no fibroids bill has been passed. This simply cannot remain the case: the need for policy solutions is long overdue.
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My Mother’s Experience at the Intersection of Fibroids and Maternal Health
My own mother’s experience illustrates these issues. “The fibroid/pregnancy/hormone therapy process is not to be taken lightly… They’re carcinogens. You never can tell the long-term effect,” said Carrol Mondesir, after surviving two myomectomies; both done laparoscopically, which involves incisions in the abdomen, at ages 34 and 36, preceded by hormone therapies, or non surgical treatments for fibroids to help alleviate severe fibroids symptoms. Thereafter, Carrol experienced a dilation of the cervix, a process that health care staff can utilize to observe and assess case by case scenarios in depth, prior to a round of IVF, which refers to the method of assisted reproduction outside of the body, at 38. A hysterectomy was never suggested to her, as they often are for Black women, but Carrol’s position as professional, married, home-owning, and middle-class may have had an influence; that said, the extremely invasive treatment she did receive demonstrates that neither finances, profession, nor education necessarily alleviate medical discrimination for members of marginalized groups.
Perhaps this was a function of the time? Well, we now live in a time in which all are aware that a woman can have a child after 35 safely, and still it seems that, even with numerous viable alternatives of less invasive removal procedures, such as an MRI-guided focused ultrasound (FUS), hysterectomies are still presented to Black women for primary consideration. From the year I was born, 1994, to 1999, 492,743 hysterectomies out of the total 3,525,237 performed in the country during that period were performed on Black women. Fortunately, Carrol gave birth, at 39, to a healthy, 8 lb., 20.5-inch-long girl. I’m Carrol’s daughter.
Left to right: Carrol Mondesir, Chloe A. Mondesir, Dr. Niels Lauersen, Alix Mondesir, Esq. Source: Alix Mondesir’s personal album.
Like my mother, I was diagnosed with fibroids in my 20s. Similarly, as someone who desires to ultimately have children, I will have to embark on fibroids removal as well. At the same time, I’ve not yet felt trusting enough of a clinician to permit any fibroids removal. My hesitancy to receive treatment for fibroids, as a result of institutionalized racism within medical institutions, is indicative of the many dilemmas for marginalized communities navigating health care, irrespective of socioeconomics and education, and for Black women in particular.
My hesitancy to receive treatment for fibroids, as a result of institutionalized racism within medical institutions, is indicative of the many dilemmas for marginalized communities navigating health care, irrespective of socioeconomics and education, and for Black women in particular.
While interviewing my mom for this commentary, she said, “I trusted my doctor, which is key… He knew what he was looking for every step of the way.” Her assertion has left me with many difficult questions. How did her clinician earn this trust? Is that trust something I can actively seek out and cultivate, or is it a matter of luck? I felt caught in a double-bind that removed all my agency from the decision: it seemed that either I would agree to treatment in the absence of trust, or defer removal until invasive surgery became unavoidable. These inquiries reaffirm that without self-advocacy, marginalized communities, including Black women, will continue to suffer even from common diagnoses like fibroids. This disparity should matter to everyone. Ensuring Black women’s well-being is integral to bettering our society, from the White House to the Supreme Court.
Modest, but Crucial, Beginnings in Fibroids Research and Policy
The current state of research and policy that centers fibroids remains dismal. However, a few efforts offer some hope for change in this trend, and should be supported and used as models.
In Michigan, State Representative Kyra Bolden’s office has worked with Michigan’s governor to secure $500,000 in the FY 2023–2024 executive recommendation general omnibus budget to conduct an education and outreach program on uterine fibroid disparities among minority populations. The work of Dr. Tamara A. Henry, along with fellow researchers at the George Washington University’s Milken Institute School of Public Health, similarly brings promise to addressing this pressing issue. With a new study underway, the project examines the impact of fibroids on Black women, and correspondingly on Black fertility rates, with the intention of advancing education and enhancing transparent conversations and decision-making.
Additional efforts, in research as well as policymaking, must join in soon if any progress is to be made. Of particular necessity are efforts focusing on comprehensive insurance coverage and quality care, which should include comprehensive coverage for fibroids treatment plans such as birth control, fibroids scans and ultrasounds, and fibroids surgery removals and post-op care.
In the meantime, the state of Black women’s maternal health at large, including fibroids health, remains critically unjust and inequitable. As the issue becomes increasingly more visible, hopefully the movement to create change will rise as well.
Chloe A. Mondesir, MSOL, associate director of policy and advocacy, National Women's Health Network, is a Spelman College BA and Mercer University MS recipient. Chloe’s specialties are senior-level program development and management, policy and advocacy training, strategic partnerships, and capacity-building.
New Fibroids Policy Must Be Part of the Black Maternal Health Agenda
Although fibroids are benign tumors, pervasive atrocities of medical bias and racism have consistently resulted in negative maternal health outcomes for Black women who experience them, including late detections of diagnoses, increased rates of surgery-related mortality, and increased rates of hysterectomies. These conditions are unacceptable: Black women deserve access to high-quality and equitable health care for all maternal health needs, including the treatment of fibroids. Increased education and advocacy on fibroids prevention, symptoms, treatment, and care— as well as adequate insurance coverage—are necessary to improve this aspect of Black women’s maternal health and fertility. This piece will strengthen discussions of Black women and fibroids and the U.S. maternal health crisis, by describing the severity of the condition for Black women in particular, and by presenting and analyzing the socioeconomic justice and policy reforms necessary for improved coverage and care.
How a Fibroids Diagnosis Changes Black Women’s Lives
Fibroids, also known as leiomyomas or myomas, are a kind of tumor whose growth is often accelerated by development of the estrogen and progesterone hormones along the uterine lining. They can be any size, and develop singularly or in clusters. In addition to prevalence, treatment, and mortality disparities with cardiovascular disease and breast cancer, Black women also produce fibroids at an increased rate, due to race and heredity. Although weight and diet are addressed with fibroids treatment plans, there are no clear-cut causes for fibroids development. Women of childbearing ages are most likely to develop fibroids, and while some women produce fibroids during pregnancy that shrink naturally post-delivery, other women will undergo a variety of medical procedures to shrink and/or remove fibroids, and alleviate severe menstruation, in order to improve their likelihood of successful fertility. The disproportionate impact of severe, symptomatic fibroids and fibroids treatment on Black women often translates into increased rates of Black women experiencing invasive fibroids removals, pelvic pain, pain during intercourse, tumultuous fertility, decreased mental health, debilitating menstruation, bloating, inconvenienced work and relationships, frequent urination, and even constipation.
Some Black women are ultimately unsuccessful with natural conception as a result of fibroids. Additionally, risks of delivering babies in breech, deferring to cesarean sections, and delaying in labor are all increased by the presence of fibroids. The maternal health crisis persists as a result of the former. As Black women of all ages, sexualities, and identities across the world have documented, there can be overwhelming biological impacts, but also socioeconomic, emotional, and interpersonal implications for women experiencing fibroids. Black women with fibroids of all socioeconomic statuses and education levels suffer from a lack of fibroids relief because of non-comprehensive and costly treatment plans, minimal insurance coverage for scans, and harmful, invasive removals.
There are ongoing medical implications of the distinctly traumatic medical experiences of Black women. Although it appears that Black women with a higher socioeconomic standing are more aware of fibroids removal and treatment alternatives, most Black women are still primarily influenced when making decisions regarding fibroids by their clinician’s recommendations. The relationship between clinicians and Black women’s medical decision-making is a fraught one: Black women express feeling dismissed and not believed by doctors, a mistrust borne of a long history of medical complications and/or death of Black mothers and their children. This reality underlines the maternal health crisis for Black women in the United States. Examples of negative clinician influence include encouragement of invasive fibroids removals, or encouragement of delaying fibroids removals, both problematic recommendations. In either of these cases, the perspective of the clinician may be more reflective of their own bias, rather than of their patient’s best interest. The corresponding relationship between Black women’s health decision-making and clinician influence indicates why a medical model consisting of cultural competency education, patient-centered care, and increasing the prevalence of clinicians who resemble the communities they serve is imperative for equitable healthcare outcomes.
Black women who desire to conceive and birth their children deserve the benefit of learning all their options, and thus full agency in preventing fertility complications. Instead of being recommended myomectomies (surgical removals of fibroids) and hysterectomies (surgical removals of the uterus) again and again, Black women deserve to experience support amidst their most vulnerable and personal medical experiences. The lack of fibroids-related policy, research, and funding remain injurious and deplorable. The undeniably distinct impact of fibroids on Black women must be addressed as a maternal health disparity.
Figure 1
Research, legislation, education, and advocacy for improved fibroids removal, care, and treatment remain almost stagnant. This is in spite of the efforts of Representative Yvette Clark, who has proposed increased public education, research, culturally competent clinical care, and Medicaid coverage for treatment through H.R. 6383, the Uterine Fibroid Research and Education Act of 2020. Before this proposal, the only legislation to reach Congress dates back twenty years—a bill presented by Congresswoman Stephanie Tubb Jones of Ohio for a chronic conditions database and increased funding. To date, no fibroids bill has been passed. This simply cannot remain the case: the need for policy solutions is long overdue.
Sign up for updates.
My Mother’s Experience at the Intersection of Fibroids and Maternal Health
My own mother’s experience illustrates these issues. “The fibroid/pregnancy/hormone therapy process is not to be taken lightly… They’re carcinogens. You never can tell the long-term effect,” said Carrol Mondesir, after surviving two myomectomies; both done laparoscopically, which involves incisions in the abdomen, at ages 34 and 36, preceded by hormone therapies, or non surgical treatments for fibroids to help alleviate severe fibroids symptoms. Thereafter, Carrol experienced a dilation of the cervix, a process that health care staff can utilize to observe and assess case by case scenarios in depth, prior to a round of IVF, which refers to the method of assisted reproduction outside of the body, at 38. A hysterectomy was never suggested to her, as they often are for Black women, but Carrol’s position as professional, married, home-owning, and middle-class may have had an influence; that said, the extremely invasive treatment she did receive demonstrates that neither finances, profession, nor education necessarily alleviate medical discrimination for members of marginalized groups.
Perhaps this was a function of the time? Well, we now live in a time in which all are aware that a woman can have a child after 35 safely, and still it seems that, even with numerous viable alternatives of less invasive removal procedures, such as an MRI-guided focused ultrasound (FUS), hysterectomies are still presented to Black women for primary consideration. From the year I was born, 1994, to 1999, 492,743 hysterectomies out of the total 3,525,237 performed in the country during that period were performed on Black women. Fortunately, Carrol gave birth, at 39, to a healthy, 8 lb., 20.5-inch-long girl. I’m Carrol’s daughter.
Like my mother, I was diagnosed with fibroids in my 20s. Similarly, as someone who desires to ultimately have children, I will have to embark on fibroids removal as well. At the same time, I’ve not yet felt trusting enough of a clinician to permit any fibroids removal. My hesitancy to receive treatment for fibroids, as a result of institutionalized racism within medical institutions, is indicative of the many dilemmas for marginalized communities navigating health care, irrespective of socioeconomics and education, and for Black women in particular.
While interviewing my mom for this commentary, she said, “I trusted my doctor, which is key… He knew what he was looking for every step of the way.” Her assertion has left me with many difficult questions. How did her clinician earn this trust? Is that trust something I can actively seek out and cultivate, or is it a matter of luck? I felt caught in a double-bind that removed all my agency from the decision: it seemed that either I would agree to treatment in the absence of trust, or defer removal until invasive surgery became unavoidable. These inquiries reaffirm that without self-advocacy, marginalized communities, including Black women, will continue to suffer even from common diagnoses like fibroids. This disparity should matter to everyone. Ensuring Black women’s well-being is integral to bettering our society, from the White House to the Supreme Court.
Modest, but Crucial, Beginnings in Fibroids Research and Policy
The current state of research and policy that centers fibroids remains dismal. However, a few efforts offer some hope for change in this trend, and should be supported and used as models.
In Michigan, State Representative Kyra Bolden’s office has worked with Michigan’s governor to secure $500,000 in the FY 2023–2024 executive recommendation general omnibus budget to conduct an education and outreach program on uterine fibroid disparities among minority populations. The work of Dr. Tamara A. Henry, along with fellow researchers at the George Washington University’s Milken Institute School of Public Health, similarly brings promise to addressing this pressing issue. With a new study underway, the project examines the impact of fibroids on Black women, and correspondingly on Black fertility rates, with the intention of advancing education and enhancing transparent conversations and decision-making.
Additional efforts, in research as well as policymaking, must join in soon if any progress is to be made. Of particular necessity are efforts focusing on comprehensive insurance coverage and quality care, which should include comprehensive coverage for fibroids treatment plans such as birth control, fibroids scans and ultrasounds, and fibroids surgery removals and post-op care.
In the meantime, the state of Black women’s maternal health at large, including fibroids health, remains critically unjust and inequitable. As the issue becomes increasingly more visible, hopefully the movement to create change will rise as well.
Tags: health care, black maternal health, fibroid