LGBTQ Agenda: InterACT hails HHS intersex rule proposal for ACA

  • by Eric Burkett, Assistant Editor
  • Tuesday August 2, 2022
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Erika Lorshbough is the new executive director of interACT, which advocates for intersex youth. Photo: Courtesy interACT<br>
Erika Lorshbough is the new executive director of interACT, which advocates for intersex youth. Photo: Courtesy interACT

It was an announcement Maddie Moran, and countless others like them, had waited a long time to hear. The U.S. Department of Health and Human Services announced a proposed rule last week making clear that, among the Affordable Care Act's various non-discrimination protections, discrimination against intersex people within federally funded programs is forbidden.

The proposal states that sex discrimination includes discrimination based on pregnancy and related conditions, sexual orientation, gender identity, sex stereotypes, and sex characteristics, including intersex traits. It's that last category that sang out to Moran, an intersex person in Philadelphia who works for interACT, an organization that advocates on behalf of intersex children in an effort to end what the group argues is unnecessary surgery often performed on children born with intersex traits.

"The rules will soon be finalized," Moran, who is 29 and nonbinary, told the Bay Area Reporter. "We're really looking forward to the finalizing and enforcing of the rules."

Such enforcement could mean, for many, a reprieve from the frequent misunderstandings of medical professionals who more often than not have little to no experience with intersex patients. Often enough, Moran said, they're well-intended, but even so the results for intersex patients can be disastrous.

And then there's the discrimination.

"We are pleased to see this administration affirm that intersex people deserve access to care free from discrimination," said interACT's new Executive Director Erika Lorshbough. "People with intersex traits can face various forms of discrimination in health care settings, from harassment to outright denial of care."

Lorshbough, who started at interACT July 11, previously worked for the New York Civil Liberties Union, where they served as deputy director for policy. They received a J.D. degree from Brooklyn Law School.

Intersex is an umbrella term and intersex traits include a wide range of variations. According to interACT's website, those traits can include variations "in a person's chromosomes, genitals, or internal organs like testes or ovaries. Some intersex traits are identified at birth, while others may not be discovered until puberty or later in life."

And even then, individuals may not get the information they're looking for or need, according to Lorshbough.

"Intersex adults can be misled by doctors about the existence or nature of their own intersex characteristics, and young children are too often subjected to unnecessary, nonconsensual genital surgeries because of bias against their sex trait variations," Lorshbough stated in a release. "This rule is an important step toward a future where people with intersex traits are never treated with anything less than the dignity and respect we all deserve."

For years, according to Moran, it's been standard practice for doctors to perform surgery on infants and young children when they don't exhibit what are generally regarded as standard sexual traits. But that surgery is "almost always" unnecessary, Moran said.

"It's almost always better to have surgery later in life when there are less complications and people can fully consent," Moran said. "It is very, very rare that a surgery needs to be done at birth."

Those complications can include a dizzying array of potentially awful outcomes, according to National Health Law Program, an organization committed to equity in health care. Long-term complications include scarring, chronic pain, chronic incontinence, loss of sexual sensation, sterilization, inaccurate gender assignment, and trauma — all from surgeries typically performed on children under 2 years old.

Past legislative efforts

There have been efforts to put an end to these surgeries but, so far, they've been unsuccessful. Gay state Senator Scott Wiener (D-San Francisco) introduced groundbreaking legislation in California in 2109 that would have prohibited genital surgery on children, allowing them to delay it — should they ever decide they want it — until they were old enough to make their own decisions about the matter. It would not have prohibited medically necessary surgery but Senate Bill 201 faced immediate opposition from medical professionals, including the powerful California Medical Association and the American Urological Association.

That same year, Dr. Lane Palmer, president of the Societies for Pediatric Urology and number of similar professional groups, wrote in an opinion piece for the B.A.R. critical of Wiener's proposed legislation, calling it "anti-choice, anti-parental rights, anti-science, and anti-patient."

Palmer cited incidents of congenital adrenal hyperplasia, a genetic condition that limits hormone production in the adrenal glands, as being of primary concern. The most common form, however, non-classical CAH, rarely needs surgery and that can often be postponed until later in life, if needed at all. Rare Disease Database notes that non-classical CAH "is not life-threatening and relatively mild. People who have no obvious symptoms of non-classical CAH do not require surgery or medical treatment."

The bill went through two iterations but due to well-funded opposition, died in 2020. Speaking to the B.A.R. last week, Wiener said he had no plans to try to introduce another version of the legislation although he is "always open to working with the intersex community on legal protection under California law."

Wiener's latest effort, SB 225, died in committee earlier this year, as the B.A.R. reported.

Some intersex people are wary of interacting with doctors.

Mari Wrobi, a queer nonbinary social worker in Sacramento, said they do their best to avoid visits to the physician. So do many of their friends, they added.

"I have gone through really challenging, traumatic medical experiences," the 25-year-old said, and they're convinced the major reason pediatric urologists and other medical professionals opposed SB 201 has less to do with preserving parental rights or even the health of the children in question, than in simply making money.

But the problems with doctors extend well beyond those who have a stake in surgeries on intersex children.

"Doctors are taught to essentially get intersex people to conform to 'the norm' of what male and female bodies are," Wrobi said. And when they're faced with an individual like Wrobi, they're frequently at a loss.

Wrobi recalled one visit with a doctor who had no experience working with intersex patients; he was actively Googling information as they spoke with him in his office, they said.

"I get panic attacks every time I go to the doctor," said Wrobi. Both Wrobi and Moran said one of the experiences they hated the most was "the parade of medical students" or essentially being put on exhibit during medical appointments.

"It feels like animals in a zoo," said Moran.

And that attention belies the normalcy of having intersex traits. Between 1% and 2% of people are born intersex in the United States, "as common as redheads," Moran noted. That's almost 7 million people.

The proposed rule by HHS, which the agency is already enforcing for those who get their coverage through the ACA, will put an end to the medical student parades as well as the greater discrimination intersex individuals endure. Or, at least, Moran and Wrobi are hopeful it will. Similar efforts introduced earlier were scrapped entirely during the Trump administration.

What this all comes down to is the issue of bodily autonomy, Wrobi and Moran said.

"There are a great number of people in the intersex community that are comfortable with the gender they were assigned," Moran said. "Some don't identify with intersex identity at all. They're still facing the same discriminatory problems as many other folks. There are many who deal with discrimination from the medical community. So many is folks are refusing to be treated by doctors who are uncomfortable with their sex traits."

For Wrobi, the protections offered under the new rule means being able to do things everyone else gets to do, such as going to the doctor. Things could be getting better, they said.

"At the end of the day, it's not going to change everything all at once," Wrobi said. "But having literal protections would make me feel so much more comfortable in a casual capacity. I would still be researching intersex affirming doctors... but there's a lot less fear going into that."

LGBTQ Agenda is an online column that appears weekly. Got a tip on queer news? Contact Eric Burkett at [email protected]

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