A California lawmaker is again attempting to ban medically unnecessary surgeries on intersex children in the Golden State. A similar legislative effort died last year in the Legislature, and it remains to be seen if the same fate awaits the bill this year.
Lawmakers in the state of New York are expected to also take up such legislation, and a federal bill is likely to be introduced in Congress this year. Should the state-level bills become law then California and New York would become the first states in the nation to restrict intersex surgeries on infants unless they are medically necessary.
Gay state Senator Scott Wiener (D-San Francisco) resubmitted his legislation late Thursday night in Sacramento. He is again working with intersex advocates and LGBTQ rights groups to adopt Senate Bill 225, known as the Bodily Autonomy, Dignity and Choice Act.
It would require parents and doctors to postpone elective surgery on intersex children until they are 6 years of age and can take part in making such a medical decision.
"This is a basic civil rights issue, and every year that these protections are delayed equates to more people, more babies that have this surgery that changes their life forever," Wiener told the Bay Area Reporter in a January 14 phone interview. "These are real human beings who are being harmed because doctors and parents are allowed to make this decision without the input of the person whose body is being fundamentally changed."
Approximately 1-2% percent of people are born with variations in bodily sex characteristics. Intersex is an umbrella term for differences in sex traits or reproductive anatomy. People are born with these differences or develop them in childhood. There are many possible differences in genitalia, hormones, internal anatomy, or chromosomes.
Physicians will perform sex assignment and genital modification surgeries on intersex infants in order that they can be classified as either male or female. The procedures can entail infant vaginoplasties, clitoral reductions, or the removal of gonadal tissues.
Condemned by rights groups
Those opposed to the practices point out that the medical intervention can result in extreme scarring, chronic pain, incontinence, lost sexual sensation, post-traumatic stress disorder, and incorrect gender assignment. Both Human Rights Watch and the World Health Organization have condemned performing surgeries on intersex infants, while the United Nations deems doing so akin to torture.
"Current medical practice allows surgeons to conduct life-altering and medically unnecessary surgeries on infants with variations in their sex anatomy simply to address the anticipated discomfort of others rather than the child's health and well-being," stated Shannan Wilber, youth policy director at the National Center for Lesbian Rights, which this year is an official co-sponsor of the bill. "These practices perpetuate gender stereotypes and may not reflect the child's choices when they are old enough to participate in the decision."
Three years ago Wiener was able to get his legislative colleagues to pass a nonbinding resolution that called for doctors to postpone performing surgeries on intersex individuals until they are able to give their informed consent. He did so in order to educate lawmakers and the public about the issue prior to moving forward with an official ban of most such procedures.
Since 2019, Wiener has tried to get a legislative ban passed by his colleagues to no avail. His Senate Bill 201 last year failed to pass out of the Senate's Committee on Business, Professions, and Economic Development in light of fierce opposition from medical groups in the state. Both the powerful California Medical Association opposed Wiener's bill, as did the Societies for Pediatric Urology.
A spokesman for the CMA did not respond to the B.A.R.'s request for comment on what its position will be this year on the bill.
The CMA and Wiener disagreed last year on the characterization of their discussions about his legislation. While Wiener accused the CMA of refusing to negotiate with him about the bill's language, the association noted that it had invited Wiener to address its council about the bill.
CMA 'engaging' this year
Wiener told the B.A.R. Thursday that he and the supporters of his legislation have been in talks with the CMA about the revised legislation he authored this year. He said he hopes to secure its support for the bill.
"Unlike last year CMA is actively engaging with us now," he said. "We had very positive meetings with them. Not that they are saying they are ready to support the bill."
Among the stated concerns with last year's bill was how it defined disorders of sex development (DSD) treatments. Pegging the timing of its restrictions on medically unnecessary procedures to when intersex children could provide "informed consent" rather than a specific age was also criticized as being too vague not only by medical groups but also lawmakers.
Wiener had revised his bill last year to specify the procedures should be postponed until intersex children turned 6 years old. He chose that age because it is when most children are expressing what gender they see themselves as and allows parents time to better understand what intersex means.
"A parent can make a much more educated, informed decision with input from the child," he said.
In addition to specifying a certain age, Wiener is also focusing his bill this year specifically on medical procedures done on intersex children. Those that would be delayed are procedures to reduce the clitoris, create vaginas, and remove hormone-producing tissues often performed on infants — such as clitoroplasty, clitoral reduction, clitoral recession, gonadectomy, procedures to lengthen or reroute a urethra from its native orifice, vaginoplasty, urogenital sinus mobilization, and vaginal exteriorization.
"We think as a matter of law we need to prohibit these medically unnecessary procedures on these babies," said Wiener.
Another change this year that will impact the legislation is state Senator Steven M. Glazer (D-Orinda) is no longer chair of or a member of the Senate committee that will debate whether to send the bill on for a full floor vote. Senator Richard D. Roth (D-Riverside) is now chairing the Business, Professions, and Economic Development Committee, whose members include freshman lesbian Senator Susan Talamantes Eggman (D-Stockton).
Wiener plans to soon meet with Roth, whom he called "a superb elected official who is a very thoughtful person," to discuss with him the merits of the bill. He told the B.A.R. he is optimistic about the legislation's prospects this year.
"I think we have a better chance this year than last year, particularly given CMA is now actively engaging with us," said Wiener. "It is a difficult bill, and difficult civil rights bills sometimes take a few tries."
The statewide LGBTQ advocacy group Equality California and interACT: Advocates for Intersex Youth are again co-sponsors of the bill, as is the American Civil Liberties Union of California. Bisexual freshman Assemblyman Alex Lee (D-San Jose) has signed on as a co-author.
At the urging of interACT, the Human Rights Campaign announced last year that its 2022 Healthcare Equality Index of more than 1,700 hospitals in the United States will include a new question about whether a hospital has policies to delay genital surgeries on intersex children. Also in 2020 two U.S. hospitals took steps to limit the kinds of surgeries done on intersex children.
In July, Lurie Children's Hospital of Chicago announced it would no longer perform irreversible genital procedures, particularly clitoroplasty, until patients could participate meaningfully in making the decision for themselves, unless medically necessary.
Shortly thereafter Boston Children's Hospital, the largest children's hospital in Massachusetts, announced it would not perform clitoral and vaginal surgeries on intersex infants.
In an email last month interACT Executive Director Kimberly Zieselman, an intersex woman, wrote that the organization would build on the "public promises to end certain intersex infant surgeries from two premier U.S. pediatric hospitals" and call for "more to do the same as well as statements from more major medical associations. We have resources available to help with this, and will continue to develop more guidance for affirming intersex care."
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