Federal officials, medical organizations, and reproductive health advocacy groups have expressed outrage in response to STAT’s recent investigation revealing that women with sickle cell disease have felt pressured into sterilizations as recently as 2017 and 2022.
Some said they knew of other contemporary instances of tubal ligations with questionable consent — in people with severe disabilities, for instance, or situations in which patients didn’t understand that the procedure should be considered permanent — and said STAT’s reporting uncovered a new dimension of this troubling pattern. For many, it also showed the need for improvements in access to care, reproductive counseling, education for physicians and patients, and federal sterilization policy.
“For far too long, racial inequities and underrepresentation in our health system have contributed to adverse health outcomes for Black women in the United States. Before making major life decisions, every woman deserves to be fully informed about her reproductive health options — anything less is unacceptable,” said U.S. Rep. Robin Kelly (D-Ill.), chair of the Congressional Black Caucus Health Braintrust.
In a statement, the American Medical Association said it “strongly opposes the performance of nonconsensual medical procedures, including forced sterilizations of any kind, and has established clear guidance and policies to safeguard patients’ rights and ensure clear communication fosters informed decisions by patients about their care.”
Among 50 women with sickle cell disease interviewed so far for STAT’s “Coercive Care” investigation, 7 described feeling pushed toward tubal ligations or hysterectomies that they weren’t sure they wanted and about which they weren’t given adequate information — and patient advocates and physicians said they’ve directly heard of dozens of other cases. The pattern extends across at least seven states, surgeries taking place at the hands of different OB-GYNs, who often frame it as a way of keeping mothers safe from the increased risks of pregnancy complications associated with sickle cell, patients said. Some 100,00 Americans live with the illness, about 90% of whom are Black.
Some of the sterilizations in STAT’s reporting were covered by Medicaid, entailing reimbursement from the Centers for Medicare and Medicaid Services, which is under the umbrella of the U.S. Department of Health and Human Services. A spokesperson for HHS said, “Every woman should have the right to make fully informed choices about their own body, medical decisions, and family,” and added that “CMS is committed to ensuring facilities that are certified as a Medicare and Medicaid provider meet quality standards, and acts when it receives information that a facility may not be in compliance.”
The agency declined to comment further when asked whether it is considering any policy changes to prevent such situations from arising in the future.
Kate McEvoy, executive director the National Association of Medicaid Directors, suggested that this may be “a standard of practice issue as opposed to a policy issue,” and pointed out that there are federal rules meant to protect public insurance recipients from coercive sterilization, including a specific consent form that has to be signed at least 30 days before the procedure and a stipulation that the patient must be at least 21 and mentally competent.
For many, though, these cases of sterilization with questionable consent raise questions about how well that policy is working. As Megan Kavanaugh, a principal research scientist at the Guttmacher Institute, put it, “Coercive practices like these fly in the face of reproductive justice and are an example of why systems like the Medicaid sterilization form need to be rebuilt and reimagined through the lens of sexual and reproductive health equity.”
Researchers have pointed out, for instance, that the form can be hard for patients to understand, among other critiques. HHS declined to comment when asked about these issues.
“It is so unfortunate that any health care provider would impose their beliefs and their discriminatory attitudes on a patient and take away someone’s reproductive capacities,” said Yolanda Lawson, an OB-GYN in independent practice in Dallas, and the president of the National Medical Association, which represents African American physicians.
She added that she has had patients come see her who didn’t understand that the tubal ligation they’d gotten from another doctor should’ve been considered permanent, and were asking for her help getting pregnant. Then again, Lawson also pointed out that post-sterilization regret is common and may be playing an important role in some cases in which a doctor’s words seem coercive in retrospect. That’s part of the reason she checks in with her patients on three separate occasions, to make sure that sterilization is what they actually want and that they fully understand the procedure.
“If you have even the sliver of a doubt, I don’t recommend you proceed with sterilization,” she said.
Ma’ayan Anafi, senior counsel for health equity and justice at the National Women’s Law Center, said these stories from the sickle cell community are “horrifying and disturbing, but sadly not surprising. While eugenics ostensibly has become less popular, the narratives that it was based on never really went away, they only evolved.”
Between the 1920s and 1970s, some 70,000 Americans were forcibly sterilized, many of them poor, disabled, or people of color, because they were viewed as “unfit,” their reproduction seen as a threat to society. According to Anafi, 31 states, plus Washington, D.C., still legally permit the coercive sterilization of people with certain kinds of disabilities. Those laws aren’t old: Some were passed as recently as 2019. It’s hard to know how often those cases occur, Anafi went on, because they tend to require a judge’s order, and the court cases in question are often sealed.
Part of the solution, advocates say, is education: Better sex education, so people have a clearer understanding of the variety of contraceptive options; better medical education, so doctors are better trained to have these consent conversations; and better history education, so people understand medical abuses of the past and how they continue to shape the present.
“I had not heard of this,” Miroslava Chavez-Garcia, a professor of history at the University of California, Santa Barbara, said about coercive sterilizations of sickle cell patients. Chavez-Garcia is a leader of the California Eugenics Legacies Project, which aims to increase public awareness of these issues. “It definitely reflects long held practices and beliefs about who is fit to reproduce.”
Alison Whelan, chief academic officer of the Association of American Medical Colleges, said doctors-in-training are taught the aptitudes that come into play when discussing informed consent. “Pressuring patients into unwanted sterilizations is unacceptable,” she said, emphasizing that physician-patient communication is critical for good care. “Medical students learn the critical competencies of communication and bedside manner in medical school, and each school designs their own curriculum to teach these core skills.”
Another important element is improving access to good care and information. “Patients could be better informed that pregnancy in sickle cell disease does carry high risks to mother and baby, even with good medical care,” said Lewis Hsu, director of the University of Illinois at Chicago’s pediatric sickle cell program. These decisions can be difficult, he went on, and to him the best solution is to have time to discuss a “Reproductive Life Plan,” strategizing about how best to ensure a safe pregnancy if one is desired, and how to avoid it if not.
Some point out that new gene therapies for sickle cell disease might render the discussion of sterilization moot, but such therapies carry their own questions of reproductive freedom: Because they involve drugs that can damage someone’s ability to have a child, some patients find themselves choosing between a potential cure and fulfilling their reproductive dreams, because fertility preservation isn’t always covered by insurance.
“It is unacceptable that choices about reproductive health are being taken away from women living with sickle cell disease (SCD). SCD is a complex and serious disease that requires coordinated and comprehensive treatment, particularly during pregnancy — from prenatal care and complication management to birth. No woman should ever be denied a voice in her own care decisions,” said Mohandas Narla, president of the American Society of Hematology.
“Health equity isn’t a buzzword. It’s a promise that can’t be fulfilled without also addressing patient autonomy, including reproductive autonomy. Whether patients are considering abortion care, breast cancer screenings, gender-affirming care, or any form of contraception — including sterilization — they must be able to do so freely and on their own accord,” said Kersha Deibel, senior advisor on Black health equity at the Planned Parenthood Federation of America.