As a highly polarized political debate over medical care for transgender youth has unfolded nationally, Oregon health officials behind the scenes have wrestled with questions about whether providers, insurers and families are getting the best guidance, newly released public records show.

Providers, civil rights advocates, medical experts and others say providing needed care to youths with gender dysphoria in a timely way can be life-saving given high reported rates of suicide and suicidal thoughts.

Such concerns drove Oregon in 2014 to become one of the first states to broadly cover transgender care through its Medicaid program for low-income people, the Oregon Health Plan.

State officials continue to support transgender rights and care. But since at least June 2023, records show, Oregon officials and experts have been quietly discussing questions that have divided the medical community around the U.S. and Europe over how the dominant transgender care guideline affects minors and whether they, their families and providers are receiving relevant information.

The discussion in Oregon serves as a microcosm of global tensions between the methods of evidence-based medicine, which are used to create formal standards to guide care, and the consumer-oriented philosophy embraced by advocates who view barriers as medical gatekeeping that has harmful consequences — for a population already shunned by some providers.

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The debate captured by public records took place within an alone-in-the-nation program set up by Oregon lawmakers to advise the Oregon Health Authority and make decisions about health care coverage in public, based on medical evidence.

Members of the state’s Health Evidence Review Commission, known as HERC, sought to apply its standard approach to the issue of youth transgender care. However, HERC collided with contested science and increasingly fraught politics over gender medicine that activists say put the lives of an already vulnerable population at risk.

Public records show the following:

• Questions raised  over the predominant guideline for youth gender care caused state-appointed experts to push health authority staff to revisit their earlier endorsement of the guideline to include other guidelines — essentially hedging their support.
• They were responding in part to advocates who obtained a previously unpublished Oregon Health & Science University report prepared for the commission that found questionable evidence for youth transgender care. Following lawmakers’ passage of a law in 2023 to ensure coverage of gender-affirming care, Oregon Health Authority officials halted work on the report.
• Records indicate that Oregon Health Authority leadership have been reluctant to let the discussion about care guidance happen in public, citing potential harm to patients, advocates and providers.
• Attorneys at the state Department of Justice appear to have registered concerns about the care guideline in a confidential memo. Health authority staff cited the memo in May 2024 to warn about “the risks” of a draft state press release highlighting the care guideline in question. For reasons that are unclear, the release was not issued.

The Oregon situation is mirrored on the national scene. In October, the New York Times reported that a $10-million National Institutes of Health-funded review of research on puberty-blocking drugs went unpublished due to concerns it would feed efforts to ban youth transgender care proliferating in red states.

The article drew notice in Oregon.

“Ultimately suppression, obfuscation, misrepresentation of evidence will paradoxically do more harm than good to the communities,” Dr. Devan Kansagara, an evidence-based medicine expert and OHSU professor who chairs HERC, wrote in an email to other commission members and Oregon Health Authority staff about the article. “As the parent of two children, I shudder to think that providers conducting shared decision-making with their patients about these really complex decisions don’t have a full set of information to work from. We can do better as a medical community.”

The records show that Kansagara, other members of the commission and Oregon health officials struggled with whether to publicly wade into a debate so fraught with emotion and politics that even a scholarly assessment of medical evidence is almost certain to not only be attacked, but weaponized — and by critics who want bans, not safeguards on youth gender medicine.

Estimates vary of the number of transgender people living in the United States. An estimate using more conservative methods concluded that as of 2022, Oregon was home to roughly 23,000 transgender people, 3,000 of whom were minors.

New transgender care standard sparked national debate

In Oregon, much of the internal debate surrounded the state’s endorsement of a medical care guideline issued by the World Professional Association for Transgender Health, known as “WPATH.” The 45-year-old organization studies how to care for trans people and offers guidance to providers regarding mental health support, administering hormone therapy, gender-affirming surgery for patients and other services.

Such standards of care guide insurance coverage and help shield providers against malpractice claims.

Blair Stenvick, spokesperson for Basic Rights Oregon, told The Lund Report that the state’s decision to require the WPATH standard will discourage discrimination and help transgender Oregonians access care in rural areas where they might have limited options. Stenvick said many transgender people avoid doctors after facing discrimination.

Stenvick said while conversations have focused on not enough guardrails for gender-affirming care, the bigger issue are barriers to care.

“This group of Oregonians does not have the same starting line in terms of mental health outcomes and work, housing and just participation in society,” Stenvick said.

A recent state report outlined the obstacles transgender people face to getting care and that many providers are untrained in services that are in demand.

Getting this care is essential for many members of this vulnerable population to live full lives.

Katherine Goforth, a Portland transgender woman and a professional vocalist, said during a hearing last month that her transition made it hard for her to find work, and without insurance coverage she is unable to access the care she needs.

“I would just like you to know that waiting and waiting and waiting is agony for me,” she said. “Like any person who requires medical care to heal, I just want my care. The more I have to wait, the more society has to wait for all the things I have to contribute.”

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Years in the making, the latest 260-page version of the WPATH guideline was meant to reflect a consensus of experts in medicine, psychology, speech pathology, social work and other disciplines.

Its instructions were “intended to be flexible to meet the diverse health care needs” of patients. Instead of rigid directives, it recommended an “informed consent approach” of letting patients make decisions after being fully informed of risks.

But the new guideline has sparked a medical debate that’s drawn coverage in publications including Medscape, Medpage Today, The Economist magazine, New York Times and The BMJ, formerly known as the British Medical Journal.

Some medical experts say WPATH’s new guideline used outdated methods, failed to systematically review research on trans care or transparently assess the quality of the evidence it cited — potentially glossing over risks.

A research review commissioned by the English government cited unknowns about the use of puberty suppression, hormones and other treatments on children. WPATH and others in the medical community have criticized the review. Still, English health officials responded by placing limits on the treatments, later approving an indefinite prohibition.

Other doubts swirled around WPATH’s decision to remove age minimums for some transgender procedures at the last minute, including 15 for breast removals and 17 for testicle removal. The group defended the decision as preserving access.

WPATH has said its standard “was created through a rigorous and methodological evidence-based approach that is firmly rooted in published literature” as well as in “consensus-based expert opinion.”

In addition to ensuring risks are fully explained, some medical authorities want additional safeguards on transgender care to avoid what’s known as “overtreatment,” a concern that’s common to many areas of health care.

Transgender activists dismiss such critics as “evidence-based dogmatists” who use evidence to hide their biases and discount patient experiences to create barriers to gender-affirming health. They say such concerns have become part of a campaign of misinformation and misrepresentation used by enemies of transgender care.

Moreover, no other transgender care standard is as comprehensive. WPATH is backed by the Oregon Medical Association and national groups such as the American Academy of Pediatrics.

Health authority spokesperson Robb Cowie called the WPATH standards “the appropriate and most broadly accepted standards for guiding gender-affirming care.”

Kellan Baker is the executive director of the Washington D.C.-based Whitman-Walker Institute that promotes the health and well-being of LGBTQ people. He told The Lund Report that conservatives’ criticisms of the WPATH standard rely on “gross mischaracterization.” Baker cited multiple studies showing transgender adolescents who receive treatments, including puberty blockers or hormone therapy, had improved mental health.

“The WPATH guidelines are no more or less interesting than any other (medical) guidelines,” he said. “The controversy that has been manufactured around them is unusual and it speaks to how politicized this issue has become.”

Oregon uses expert group to guide coverage

Unlike other states, for more than two decades Oregon has used HERC, an independent state-appointed commission of experts picked by the governor, to sift through research and hold public hearings to make decisions about health care coverage provided to low-income members of the Oregon Health Plan.

HERC, according to its website, works to ensure that medical procedures, devices and tests covered by the state “are safe and proven to work.”

In 2014, HERC made Oregon only the fourth state to broadly cover gender affirming care, including for youth. The same year, Oregon became the first state to cover puberty blockers for trans adolescents.

Starting in 2020, Oregon Health Plan providers and members began seeking better coverage of additional services then still considered cosmetic, such as hair removal and facial feminization.

In August 2023, HERC issued a guideline requiring Medicaid insurers’ coverage of gender affirming-care. In November, it modified the guideline to endorse WPATH’s standard of care. That came after providers and insurers asked for clarity on House Bill 2002, a new law guaranteeing and expanding access to transgender care.

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Controversy over care standard comes to Oregon

Paul Terdal, a business consultant and longtime autism advocate who at times has been a polarizing figure in health care policy, began bringing the WPATH controversy to the health evidence commission’s attention.

A self-described liberal Democrat who has two sons with autism, Terdal was concerned that by endorsing WPATH, the commission removed patient safeguards that could prevent children with mental health conditions from being “fast-tracked” into procedures with minimal diagnosis or assessments.

“I have a lot of concerns that what is in (the WPATH standard) is risky and unproven,” Terdal told The Lund Report.

Using the state’s records law, he uncovered an unpublished draft OHSU report prepared for the commission that seemingly was at odds with WPATH. It concluded there was little evidence to support some types of gender-affirming treatment for adolescents.

Health authority staff halted work on the report in June 2023, citing lawmakers’ passage that month of the new gender-affirming care law.

In his Jan. 3, 2024 testimony to the commissioners, Terdal highlighted “a recent surge in autistic adolescents identifying as transgender,” saying WPATH guidance lacks “safeguards to ensure that the right patients receive the right care.”

Privately, Kansagara, the chair of the commission, found Terdal’s testimony persuasive.

In a Feb. 2 email to fellow commissioners and HERC’s health authority staff, he said had been thinking “a lot” about Terdal’s testimony, and shared a New York Times op-ed spotlighting concerns over whether transitioning youths were receiving the information they needed to make informed decisions about care.

“I know I expressed a lot of hesitation about HERC getting involved,” he wrote. “I remain concerned about the potential for HERC to get politically marred if we enter this without a clear sense of scope and the role of HERC.”

But, he added, “It is remarkable that few medical organizations are engaging in this, and maybe it is the right thing to do to really clarify what is known and not known. Anyways, I for one would be happy to continue thinking about how we might do this carefully and productively.”

Asked about the comment, Kansagara said his thoughts at the time were based on a lot of reading he’d done on the issue, not just the Times piece. He learned more as the year went on.

Terdal shared with the commission an article in the BMJ journal that cited experts who argued that WPATH did not follow normal standard of care protocols and therefore made recommendations with an unclear evidence base.

Mark Helfand, professor of medical informatics and clinical epidemiology at Oregon Health and Science University, told the journal that WPATH did not differentiate the quality of evidence it relied on.

Weak evidence, he told The BMJ, “doesn’t just mean something esoteric about study design, it means there’s uncertainty about whether the long term benefits outweigh the harms.”

On Feb. 9, the top health authority staffer to HERC, Jason Gingerich, wrote to OHA higher-ups noting Helfand is “well regarded in Oregon.” But he said the commission should stay out of the issue, noting that lots of areas of medicine lack evidence and yet people need care.

“Legally, as they always do, providers need to use their judgment and operate within their scopes of practice except where there is clear evidence of harm and we don’t have that here,” he continued. “We have lots of observational evidence of benefit, and some such evidence of regrets which may or may not be harm. And there are regrets and harms from many procedures and medications.”

He added, “Meanwhile, the legislature has spoken about what coverage should be and put significant constraints on the role of payers in this area of controversy.”

Internal debate grows

Commissioners kept asking staff to review the issue, however.

On April 5, after reviewing the concerns raised by Terdal and his allies about the WPATH standard, the Oregon Department of Justice issued a confidential memo on the topic.

Gingerich wrote that the memo indicated the HERC should withdraw its guidance endorsing the WPATH care standard and that the state should instead cite it in a regulation, for legal reasons. The goal: to “lessen risk.”

Medications that delay puberty are sometimes prescribed to trans adolescents to prevent unwanted bodily changes. Proponents say these medications improve the well being of gender-distressed youth and buy time to consider surgery, since puberty is irreversible. Those raising concerns cite research indicating they could cause lower bone density and affect fertility.

Conservative critics oppose gender-affirming surgeries for youth, arguing they are irreversible. Some studies cite risk of complications.

Surgery for minors remains very rare. Terdal analyzed Oregon health insurance claims data from 2019 and found that 7,585 patients received gender-affirming care that year. Of those, roughly 700 had some kind of surgery, 35 of whom were under 18. Over 100 patients, all under 18, were prescribed puberty blockers, according to the analysis.

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On May 7, in a discussion between OHA managers about what restrictions would be appropriate for the newly covered transgender care benefits, the agency’s medical director for behavioral health, Margaret Cary weighed in. Asked whether there are “risks and concerns” in covering puberty blockers for youth diagnosed with gender dysphoria?, she wrote, “YES!”

The increase in requests for gender-affirming care was encouraging, she wrote, but added that in the last ten years she’d seen that “the eagerness to ensure access has sometimes resulted in skipping over steps and not considering the developmental and holistic context of the youth.”

She advised against adding any additional review of care claims for the moment. “Not at this time, but likely in the future,” she wrote.

“Given the attached DOJ memo,” Gingerich wrote, “I’m a little uncomfortable highlighting WPATH 8.0 so prominently.” He also cited the ongoing concerns being raised in public comments and warned to “be aware of the risks.”

The announcement was supposed to go out in time for Pride Month. But, as written, the draft June 3 release was never sent.

Instead, the additional benefits were cited in a more obscure state newsletter. On June 15, the state issued a press release highlighting resources for youth.

Later that month, on the national scene, reporting on released records showed the Biden administration had shared concerns that age minimums on transgender procedures contained in an almost-final draft of WPATH standard would have fueled political backlash. After the report, the Biden White House briefly came out against transgender surgery for youths before issuing a clarification.

Anti-trans push sparks civil rights, health concerns

Oregon lawmakers had passed HB 2002 in response to the Supreme Court’s rightward shift and as roughly half of U.S. states have enacted bans or restrictions on gender affirming care for minors.

In June, the U.S. Supreme Court agreed to hear a case that originated in Tennessee regarding whether states can ban adolescent gender-affirming care. Civil rights advocates say the outcome could threaten lives as well as decades of progress.

That month, records show the commission’s leaders again expressed “discomfort” to health authority staff about their earlier adoption of a guideline endorsing the WPATH standard. They hoped not to remove WPATH, but to add alternative standards of care, such as that of the University of California, San Francisco, to help guide providers and families.

In two internal meetings in October, four of the top commissioners on HERC and its subcommittees “expressed concern about the lack of change in the guideline in response to leadership’s request,” according to records. The commissioners “acknowledged the social and political environment.”

Gingerich and other staff began working on a written response.

“Our assessment is that a public discussion could result in harm to many (including OHP patients, advocates and providers who care for them), and is unlikely to provide clearer guidance to help Oregonians and the providers who service them,” according to the initial draft.

On Nov. 4, health authority staff met with top agency leaders to discuss three options to present to commissioners two days later. The options included withdrawing the commission’s endorsement of the WPATH standard or qualifying it by adding additional standards as alternatives.

Chris DeMars, an agency division director, told The Lund Report the discussion instead focused on HB 2002 overriding the commission’s ability to issue guidance.

On Nov. 5, Donald Trump, who demeaned trans people on the campaign trail, while vowing to stop gender-affirming care for minors, won the national election.

The Nov. 6 meeting planned to brief commissioners on options did not take place.

On Nov. 14, at a public hearing of the commission, DeMars read aloud a revised version of the statement that Gingerich drafted earlier.

“OHA staff and leadership have been meeting to decide next steps,” she said.

Dr. Karin Selva, a pediatric endocrinologist at Randall Children’s Hospital at Legacy Emanuel, suggested that the debate over evidence is overblown.

She said that even prominent criticisms of WPATH nevertheless support providing medical care for some transgender youth in “a holistic, comprehensive and individualized manner.” That approach, she said, is consistent “in all of Oregon pediatric gender clinics.”

Evidence of medical treatments’ effectiveness should be considered “along with risks, benefits, family values and resources,” she said.

“Gender care is nuanced,” the doctor added. “I can’t say that enough. This is precisely why evidence quality is not synonymous with clinical recommendation.”

Asked about the records, Kansagara, the evidence-based medicine expert who chairs HERC, told The Lund Report in an email that he “unequivocally” supports gender-affirming care for those who need it.

The issue that HERC had been wrestling with internally, he said, was the “fairly technical question” of “whether or not the WPATH standards of care adhere to current best practices for the development and reporting of clinical practice guidelines.

“The practical impact of answering this question is uncertain since HERC is not issuing a coverage guidance and since the current law already provides for access to gender-affirming care,” he continued. “WPATH remains a valuable resource and is, as far as I am aware, the most extensive document outlining standards of care available and reflects the input of a large group of international experts.”

Kansagara added that when evidence in medicine is limited or inconclusive, which is often,“we rely to a greater extent on clinical experience and the values and preferences of the individual being treated. This is no different for many aspects of medical practice in which the evidence has not reached a level of maturity to, on its own, guide decision-making.”

Nick Budnick contributed reporting.

This story was originally published by The Lund Report, an independent nonprofit health news organization based in Oregon. You can reach Jake Thomas at [email protected] or via X @jthomasreports

This republished story is part of OPB’s broader effort to ensure that everyone in our region has access to quality journalism that informs, entertains and enriches their lives. To learn more, visit our journalism partnerships page.

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