ST. LOUIS — A mother in ºüÀêÊÓƵ County braced herself last month as she began reading an incriminatory account of the transgender treatment center where her child is a patient.
Paragraphs into what the mother calls “wild accusations,†she froze. She was reading about her son.
“It literally puts us in the bulls-eye,†the mother said.
Parents interviewed by the Post-Dispatch have expressed shock at allegations of negligence and malpractice made by a former case manager, Jamie Reed, against Washington University’s Transgender Center at ºüÀêÊÓƵ Children’s Hospital. But they also say they are fearful. They don’t know who has access to their children’s information — or what will be done with it.
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A narrative by Reed, including anecdotes about specific, unnamed patients, was , a new online media outlet, on Feb. 9. Her story, and a provided to Missouri Attorney General Andrew Bailey, prompted a state investigation and additional oversight by the university.
The following day, the mother lodged two federal privacy complaints and one with the university.
Reed “shared details in that article that put myself and my child at risk,†said the mother.
The Health Insurance Portability and Accountability Act, known as HIPAA, regulates how a patient’s health information can be stored, accessed and shared. The threshold for a violation is high. , more than two-thirds of challenges received by the U.S. Department of Health and Human Services are rejected after review.
Matthew Cortland, a health care lawyer and activist based in Washington, filed a complaint on March 12, citing Reed’s story and by journalist Jesse Singal.
In both, Reed references a “red flag list†of patients kept on a spreadsheet by her and another Transgender Center employee. The Substack piece also includes quotes from notes Reed said she kept on her iPhone from a therapist’s letter about a patient. , Singal published a screenshot of a partially redacted spreadsheet, including referral dates of new patients.
Whistleblowers, like Reed, are covered by an exception to the privacy rule in which they are allowed to disclose protected health information to certain oversight agencies and attorneys if they believe professional standards have been violated.
Journalists are not among that group.
Reed’s Free Press narrative alone raised “significant concerns,†Cortland said. “When Singal wrote about things Reed told him and had given to him — either what Singal has published is not true or Reed has violated the privacy rule.â€
HIPAA breaches often result in a corrective plan or technical assistance, but fines can also be levied. Criminal violations, which are rare, can incur fees or jail time; they involve knowingly and wrongfully obtaining and disclosing protected health information.
In an email sent last week, Ernie Trakas, an attorney for Reed and a member of the ºüÀêÊÓƵ County Council, said he was confident his client “has not violated any HIPAA patient identifying protections.â€
Trakas, with the Child and Parental Rights Campaign, continued: “Information she shared with news media was meticulously vetted and, if necessary, thoroughly redacted to prevent even speculative interpretive efforts at identifying patient health information. Finally, none of the information provided is remotely contained or included within any definition of ‘identifiers’ listed in the HIPAA safe harbor rule.â€
That is not consolation for a mom from south ºüÀêÊÓƵ.
“We do not know the extent of the information she collected and handed over to various entities,†the mom said. “The thought that (the lawyers) she is working with have had access to private info on trans patients is terrifying for me.â€
‘Everybody and their uncle’
Christine Hyman of St. Charles was on the phone with a compliance officer at Washington University the morning after Reed’s first-person narrative was published. She requested an account of all the times the medical records of her son, who has been treated at the Transgender Center since 2018, were touched.
Hyman, a board member of the support group TransParent, said she is not sure when she will receive the report from the university.
“Everybody and their uncle has asked for the same thing,†she said the compliance officer told her. “So it’s going to take a while to get through it.â€
A mother from St. Charles also called Washington U. on Feb. 10 to lodge a privacy complaint.
The compliance officer suggested adding a “break glass†step to her daughter’s record, which requires documenting a reason every time someone logs in.
The mother said she felt good about the university’s response but worries that Reed, who is now employed in another part of WU’s School of Medicine, could continue to access Transgender Center files through the university’s online system.
Washington University did not respond to a question on whether that was possible, but a spokeswoman said in an email: “We continue to look into this matter to ascertain the facts, including the handling of confidential patient health information.â€
Several other parents are weighing whether to officially submit a grievance against an institution they believe has provided quality care to their children.
“We are concerned about the fallout around the reputation of the Transgender Center,†said Amanda Stuart of ºüÀêÊÓƵ. “But it really sounds like Jamie should have been fired.â€
‘Freaking out’
Becky Hormuth of Wentzville is worried about compounding the backlash she and her family have already endured. Just after Reed’s story was published, a commenter on Hormuth’s Twitter feed referenced personal details about her son that she had not shared online.
The tweet also said Hormuth is “steralizing her child, ensuring ‘he’ will have severe health complications forever.â€
“I was freaking out over the tweet,†Hormuth said.
She said her son is so fearful that the center will close that he wants to move. She is scared, too.
“It’s not just the center,†Hormuth said. “We’ve got our hands tied because we’ve also got Jeff City holding the cards.â€
Republican lawmakers in the Missouri Senate have vowed that a bill prohibiting gender-affirming health care for minors will be voted on this week. Supporters of the legislation plan to hold a rally Monday at the Capitol.
The ºüÀêÊÓƵ County mother who recognized her son in Reed’s Free Press story has been on high alert for more than a month. Her blood pressure is up. A piece of mail without a return address — that turned out to be junk — made her hands shake. She feels exposed.
Dozens of families are coping with the repercussions of Reed’s allegations, she said.
So in addition to the HIPAA complaint, she submitted one about Reed to the federal Office for Civil Rights on the basis of sex discrimination.
“This was an attack on the trans community,†the mother said. “She is damaging an entire group of people who were already marginalized.â€