When Surgeons Fail Their Trans Patients

These patients’ experiences and their difficulty finding recourse aren’t about one doctor.

When Surgeons Fail Their Trans Patients

Carlie had just returned to Louisiana when she went to the movies with her girlfriend and had trouble sitting down comfortably. It was the spring of 2017 and about two weeks prior Carlie, a 34-year-old trans woman, had undergone a vaginoplasty: a surgery sometimes performed after injuries or post-cancer but most commonly associated with transition-related care. Carlie chose a surgeon, Dr. Kathy Rumer, who was based in the Philadelphia area and specialized in gender-affirming procedures.

The two had spoken on Skype a few months before the surgery but never had an in-person pre-op appointment. Carlie says she saw the doctor briefly before being wheeled into the operating room, but didn’t see Dr. Rumer again during her three days of recovery in the hospital. Her follow-up appointment, a week after the surgery, was administered by a nurse.

Returning home from the movie back in Louisiana, Carlie took a closer look at her new vulva. While most two-week-old post-op vulvas won’t be pretty to look at, Carlie was alarmed when she found a “large, thumb-sized piece of dead skin kind of floating out of it,” she says. The next morning, she called the emergency number she had been given and sent an email to Dr. Rumer’s office. On Monday, the office suggested Carlie email photographs of the area of concern so the surgeon could take a look. A few days later, Carlie and her mother say they heard from the doctor, who was on vacation and told Carlie she shouldn’t be concerned. If it continued to hurt, her mother, a retired surgeon, could cut off the hanging skin, Dr. Rumer said.

The advice shocked both Carlie and her mother. She says her genitalia smelled “horrible” and her labia was hanging by a thin string of skin. A week after the conversation with Dr. Rumer, Carlie says she visited a local gynecologist, who was alarmed and brought Carlie to Oschner Baptist Hospital in New Orleans for emergency surgery. Part of Carlie’s vagina had been affected by necrotizing fasciitis, an infection that’s a risk in any surgery. Generally, it results in a loss of tissue in the infected area.

“‘If you think you can do better, why don’t you just give her a vagina?’”

A team of doctors, none of whom had experience with a post-op vulva or vagina—post-op genitalia are slightly different from their cisgender counterparts—operated on Carlie. She spent two days in the intensive care unit and five days total at the hospital. During this time numerous calls from Carlie’s mother and her OBGYN to Dr. Rumer’s office went unanswered, both she and her mother say.

When they heard back from Dr. Rumer’s office—there had been an administrative mix-up with Carlie’s records—the surgeon was upset that Carlie hadn’t arranged to fly to Philadelphia to have the doctor fix the issue. According to Carlie and her mother, Dr. Rumer snapped at them in a phone call with Carlie’s mother: “I remember hearing it clear as day,” says Carlie, who could overhear the conversation. “Dr. Rumer goes, ‘I followed the WPATH guidelines on how to treat my patients. If you think you can do better, why don’t you just give her a vagina?’”

Dr. Rumer was referring to World Professional Association for Transgender Health, or WPATH, the organization that sets out guidelines and best practices for trans-related health worldwide. The organization serves as an active gatekeeper, laying out strict guidelines for which patients are allowed access to transition-related surgical procedures, but it does not expressly oversee the practices that perform them. In finding a doctor to perform a surgery prospective patients like Carlie are largely on their own.

Dr. Rumer is an experienced surgeon: she has operated her own practice since 2007 and since 2016 has focused exclusively on trans patients, performing as many as 400 gender-affirming surgeries a year, including facial feminization surgery, breast augmentation, and GRS. In 2018, Dr. Rumer was featured in an NBC documentary about a college student’s transition. According to her website, she is one of the few female board-certified plastic surgeons in the Philadelphia tri-state area, a fellow of the American College of Osteopathic Surgeons, and a site director for the Philadelphia College of Osteopathic Medicine (PCOM) Plastic and Reconstructive Surgery Fellowship. She’s been a member of WPATH since 2010. (For full disclosure: I paid $100 for a surgical consultation over Skype with Dr. Rumer in late September 2017 but ultimately decided to go with another surgeon.)

In finding a doctor to perform a surgery prospective patients like Carlie are largely on their own.

Many patients who go to Dr. Rumer for bottom surgery are happy with their results. But the people who are not satisfied with their surgeries, at the hands of Dr. Rumer or others, have found it difficult to have their complaints meaningfully addressed. In the highly politicized world of gender-affirming surgery, answers about standard measures of care can be hard to find. Advocates describe a patchwork of surgical practices and “transgender centers for excellence” overseen by local hospitals and state medical boards. Offices can vary widely when it comes to patient-to-doctor ratios and what kind of specialized training a surgeon receives.

When problems occur, speaking out about such a private issue can be difficult—Carlie requested a pseudonym, concerned about harassment and being identified publicly with such an intimate issue in the press. And speaking out after a traumatic experience, in a moment when so few are able to access care, can either be weaponized by anti-trans activists or interpreted by advocates as a step back.

When she posted about her experience with Dr. Rumer on message boards in an attempt to warn other potential patients, Carlie’s words were reprinted on anti-trans forums. A complaint she filed with the Pennsylvania Bureau of Professional and Occupational Affairs resulted in no formal action. Jezebel spoke to four others who say they experienced issues with surgeries performed by Dr. Rumer, ranging from allegations of poor post-operative care to construction of their vaginas that left them in significant pain or with vulvas that didn’t look anatomically correct. Additionally, since 2016 there have been four malpractice suits filed against the doctor over similar issues, all of which were eventually arbitrated out of court. In 2018, another group of trans people who saw her speak at a trans medical conference filed a complaint accusing the doctor of falsifying success rates, after which the Pennsylvania State Medical Board communicated with the surgeon but took no disciplinary action.

Speaking out after a traumatic experience, in a moment when so few are able to access care, can be weaponized by anti-trans activists

It seems likely Dr. Rumer would say, as she writes on her website and argued in court, that these complications are the result of poor adherence to her office’s postoperative directions, or are part of the reasonable risk of any surgery of this kind. But when Jezebel reached out to Dr. Rumer with a detailed list of questions and patient allegations, we heard back from a lawyer instead. In April, Dr. Rumer’s counsel attempted to subpoena me in an unrelated libel case, demanding I hand over “all notes, emails, documents and research” related to this story. Just prior to publication, Dr. Rumer again declined to comment and through her attorney threatened to add Jezebel to her pending libel suit.

These patients’ experiences and their difficulty finding recourse aren’t about one doctor. There is a larger concern that is poised to swell as demand for GRS grows: that without a specific reporting mechanism for patients who feel wronged or an institutional body tasked with regulating the specifics of trans-affirmative care, patients who seek these surgeries are locked in a devil’s bargain, unable to be assured of the quality of care when they sign on and unclear how to move forward when they’re unhappy with the results.

While any surgery, especially one performed on the body’s most sensitive bits, carries risk there’s nothing inherently dangerous about GRS for trans women. According to a 2018 study, the percentage of trans people who end up regretting vaginoplasty is about 1 percent, significantly lower than your average knee surgery. The most common reason for regretting trans-affirming surgery, in fact, is inadequate surgical outcomes.

The modern technique for vaginoplasty was developed over 100 years ago in Europe and has been practiced in the United States for at least the last 50 years. In 1979, Johns Hopkins stopped offering GRS for political reasons despite being one of the leading-edge American hospitals to develop the practice. Many other hospitals followed suit and the Department of Health and Human Services banned Medicare coverage of the procedure in 1981, prompting most insurance companies to explicitly exclude trans-related coverage from private insurance plans shortly after.

As a result, only a handful of specialists in the U.S. even offered bottom surgery in the first place, catering to a narrow pool of patients who could actually afford the procedure. Most trans people were forced to pay for surgeries out of pocket until 2014, when the Obama administration restored coverage of gender-affirming surgeries on Medicare and instituted a ban on insurance exclusions of transition surgeries in 2016. Once the Obama-era policies were implemented and more trans people could pay for these procedures with insurance or Medicaid, some hospitals rushed to meet the pent-up demand.

Still, such procedures are expensive: It can cost around $25,000 for a vaginoplasty. A 2018 study by researchers at Harvard University and Johns Hopkins indicated that the number of trans-affirming surgeries showed significant growth between 2000 and 2014, with an increasing number of them paid for through private insurance or Medicaid. “As coverage for these procedures increases, likely so will demand for qualified surgeons to perform them,” the researchers concluded. But there are few standardized rules around what “qualified” means, and gender reassignment is plagued by issues that affect other areas of the medical industry. Surgeons are accountable to a patchwork of institutions and GRS training can vary between a week of observation with an established surgeon to a years-long apprenticeship program. There is no independent resource where patients can get data on a surgeon’s complication rate. Often, patients rely completely on a surgeon’s self-reported data.

GRS training can vary between a week of observation with an established surgeon to a years-long apprenticeship program

While insurance coverage for GRS has benefited countless lives, an unintentional side effect has been what Dr. Marci Bowers, a San Francisco-based gender surgeon who has been practicing for three decades, refers to as a culture of “permissiveness”: “As far as an insurance company goes, if the patient survived the operation, leaves the hospital in a prescribed amount of time, and doesn’t die of some hideous complication or is not readmitted multiple times,” she says, “that is their measure of success.” Providers like Dr. Rumer, she says, understand the industry and sign contracts to become “preferred providers,” effectively funnelling new patients into their practice based on these metrics.

In May 2018, 192 post-op trans patients penned an open letter to WPATH laying out several concerns about the current system, among them that surgeons were offering “free or low-cost surgeries to under-resourced patients in order to gain operating experience in procedures for which they have incomplete professional training,” falsifying complication rates in “preoperative counseling, academic publishing, and public presentations,” providing experimental surgeries without informed consent, presenting inaccurate medical information to patients, and providing insufficient aftercare for patients.

“There’s still an imbalance between the demand and the number of individuals who are trained to do these surgeries,” says Dr. Loren Schechter, president-elect of the American Society of Gender Surgeons. “Our goal, of course, is to train more people so that at least in major areas people don’t have to travel … So there’s also that lag time between getting people trained appropriately and getting institution centers [and] hospitals up and running.”

Cutting down on that lag time to meet the growing demand for gender-affirming surgeries can often mean cutting valuable training corners for hospitals and surgeons. “Basically two steps forward, one step back,” says former WPATH president and current communications director Jamison Green of the explosion in surgical growth. The step back, he says, is that some surgeons may not opt to train in the most rigorous environments: “They don’t join WPATH. They don’t make themselves available for trainings. Maybe they go and scrub in with one surgeon on one surgery and they say, ‘Oh yeah, now I know how to do this.’” As one anonymous surgeon quoted in a 2017 survey put it—”someone is going to see someone with a reputable name; they learn for a week, and they start doing them. And that is completely unethical!”

“If the patient survived the operation…and doesn’t die of some hideous complication or is not readmitted multiple times, that is their measure of success.”

Constantly shifting insurance plans and laws governing insurers in the U.S. mean that trans people are often anxious to take on such procedures, fearing that while vetting a potential surgeon an insurance company might change its coverage rules. Insurance coverage often dictates where patients receive care, as it did for Danielle, a 42-year-old trans woman who lives in Portland, Oregon, and depends on Medicaid. In her state, some gender affirming surgeries are covered by the state’s Medicaid program, but with trans healthcare a political target for the Republican party, Danielle felt some urgency to have it done quickly back in 2015.

“I was like, I need to get a vagina before we have a Republican president,” she told Jezebel in an interview in the spring of 2018. Medicaid sent her to see Dr. Daniel Dugi in Portland, who she says informed her that she was his 12th transgender vaginoplasty patient ever. Once she woke up from the anesthesia, she was told that the procedure had taken twice as long as normal because her genitalia had been difficult to dissect.

Though she says her visual and sensorial results were good, Danielle’s experience in the hospital left much to be desired. “Nobody in that ward knew how to deal with peoples’ trauma,” she says. She says she felt ignored and hastily cared for after a long and invasive surgery. Jezebel spoke with several other patients of Dr. Dugi, who together ended up filing an official complaint with the hospital. While Danielle’s complaints centered on her experience with post-op care within the hospital, others found themselves struggling to deal with serious complications, including fistulas and incontinence after surgery. According to one source with knowledge of the group’s discussions with the hospital, the group felt that the hospital’s complication rates were much higher than other hospitals offering similar procedures.

In response to several questions from Jezebel, Dr. Dugi says the hospital does not address specific patient interactions because of privacy laws but does admit the staff had several discussions with transgender patients. “Over time, we have participated in several in-person meetings with individuals and groups. These meetings are ongoing until a consensus is reached regarding current patient concerns, the goals of the discussion have been addressed, and plans are in place to prevent recurrence,” Dr. Dugi writes in an email.

Specifically, the hospital started a community advisory board comprising of local trans and gender non-conforming people who consult with staff and leaders from OHSU’s Transgender Health Program, patient relations department, and other relevant parties.

Dr. Dugi tells Jezebel that surgical complications at the hospital are tracked and used to improve outcomes and that their complication rates are in line with or better than the published results of other expert surgeons. “Our surgeons strive for perfection, but occasionally there are complications,” he says. “All OHSU clinicians engage in regularly scheduled internal reviews of their medical and surgical outcomes through morbidity and mortality conferences that are coordinated by each department’s quality medical directors.”

Dr. Dugi notes that staff concerns about the quality and outcome of care are elevated to a peer review process, which can be escalated further to an institutional peer review committee. “This standard is followed by all medical centers and defined by national accrediting agencies,” he says.

While the OSHU patients negotiated with hospital officials over possible reforms, some former patients of Dr. Rumer have taken more extreme action. Over the course of 2018, four former patients of the surgeon’s filed separate malpractice suits in Pennsylvania’s Eastern District court. Each was represented by the same law firm, and alleged that Dr. Rumer’s work had been so poorly done in their cases it required the plaintiffs, all residents of New York City, to undergo revision surgery at Mt. Sinai.

Each of the plaintiffs described strictures and damages to their urethras, vaginal cavities, and labias along with bulges or misshapen clitoral hoods, issues characterized as “permanent injury” such that the plaintiffs would “never have sexual function again.”

The suits described “humiliation” and “severe psychological trauma” as a result of Dr. Rumer’s work, and each originally demanded a jury trial but was eventually submitted for voluntary private arbitration. In one case, according to a pre-trial memo, attorneys intended to bring Dr. Jess Ting, a surgeon and medical school professor specializing in GRS at Mt. Sinai, to the stand. He was expected to testify that even after three surgical revisions, Dr. Rumer’s work left the plaintiff unable to “achieve orgasm or sexual satisfaction without pain,” among other significant issues including an “oversized clitoris without clitoral hood” and hair that hadn’t been properly removed.

Each of the plaintiffs Described issues characterized as “permanent injury” such that the plaintiffs would “never have sexual function again”

“As a surgeon I can tell you every surgeon has bad outcomes,” Dr. Ting tells Jezebel. “We all have complications, things don’t always come out the way we want them to. When you see a pattern of outcomes that suggests that maybe a surgeon isn’t meeting standards of care, then you feel obliged to speak up.”

In a pre-trial brief filed in late February, before the case was referred for arbitration, Dr. Rumer’s attorneys argued the surgeon was not negligent, hadn’t deviated from the standard of care and that the issues the patient experienced were “recognized complication[s] of vaginoplasty.” The pleading also noted that the patient was “not employed at the time she was treated by Dr. Rumer” and that the 47-year-old hadn’t reported significant problems until more than a year after her surgery. The details of the arbitration proceedings and their outcomes are not public; none of the plaintiffs in the cases against Dr. Rumer’s practice returned multiple requests for an interview.

“As a physician nobody likes malpractice suits,” says Dr. Ting. “And as a defendant in malpractice suits myself, it is a very uncomfortable topic. That being said, I feel as practitioners in this very small and new field, we have to police ourselves and maintain standards.”

Jezebel reached out to several prominent gender surgeons to inquire into how many of Rumer’s former patients they had seen for revision procedures to fix her results. Most, understandably, declined to comment, but three who wished to remain anonymous had collectively seen more than 50 patients who had originally gone to Dr. Rumer for GRS since 2016.

“We all want greater access for trans persons seeking surgery and we do our best to educate and to facilitate better outcomes,” says Dr. Bowers, the San Francisco gender surgeon, but “Dr. Rumer falls short in some terrifying ways—blaming the patients for their surgical complications, anger and hostility towards those who complain, lack of availability or accountability.” Dr. Rumer, she adds, “also understands the vulnerability of patients who desperately desire surgery in a climate of still relatively few surgeons.”

Hannah Simpson, a 34-year-old trans woman from New York City, says that two weeks after she had GRS with Dr. Rumer in the summer of 2014, she noticed that her vulva was starting to look asymmetrical, with one part looking red and swollen. Despite Dr. Rumer’s insistence that everything was fine Simpson developed necrosis of the vulva.

Simpson, who was studying medicine at the time, described her new vulva: a misshaped clitoris that was “off to the side” and a labia that “looked more like a lump than two flaps.” Simpson experienced other complications as well, including hair inside her vaginal canal that the surgeon had promised to remove, as well as odd placement of her urethra. Additionally, Simpson says that Dr. Rumer left excess tissue around the vaginal opening that made dilation extremely uncomfortable. In a follow-up appointment and then again in a subsequent email which Simpson shared with Jezebel, Dr. Rumer blamed the dead skin on a pair of too-tight Depends Simpson had worn in the hospital, which Simpson believes was a way to dodge the issue. Dr. Rumer declined to respond to Jezebel’s inquiries about her treatment of this or any of her other patients.

According to Schechter, necrosis like Simpson experienced is a risk in any vaginoplasty, and could have been caused by wearing a too-tight undergarment early in post-operative recovery, though it can be difficult to pinpoint exactly what may cause the infection for a given patient. “Infections occur, tissue necrosis, dehiscences, those things occur with any surgery,” he says. Schecter notes that postoperative travel and unclean or unsafe home environments may also contribute to complications, but ultimately it’s up to surgeons to counsel their patients and ensure these risk factors are minimized.

A revision procedure with a different surgeon was unsuccessful in repairing Dr. Rumer’s initial work, even causing additional issues, and Simpson was left without a clitoris. She has now consulted with, by her own count, 36 surgeons about fixing her genitalia. The experience has left her disillusioned with the medical profession and she is no longer pursuing a medical degree. She has not pursued any official avenues of complaint, worried that doing so would make it less likely that another surgeon would take on her case.

Simpson’s complaints about Dr. Rumer’s work are similar to those alleged by other former patients who spoke with Jezebel. “I’ve been warning people off Rumer as much as I can,” says Ember Rose, a 28-year-old non-binary person from Boston. They went to Dr. Rumer for bottom surgery in 2014 because the surgeon had the shortest wait time of all of the options presented by their parent’s insurance plan.

Rose’s surgery didn’t turn out as planned. “Rumer left a lot of erectile tissue under my labia minora, which can be a problem,” Rose says. “It doesn’t really look like a vulva.” Even other doctors, they say, will “end up at least once trying to stick a finger in my urethra because it’s not obvious.”

The lack of doctors who perform GRS and the lengthy waiting lists mean people have few options to choose from when they go looking for a surgeon.

Rose says that Dr. Rumer didn’t construct a clitoral hood, leaving their clitoris completely exposed to irritation. Additionally, Rumer’s hair removal technique failed, leaving some hair growing just inside the labia, though not in the vaginal canal itself. “It kept accruing secretions and urine and got really smelly and I was scared of the thing for like the first year,” they say, “until I figured out there wasn’t supposed to be hair there.”

Rose says they’re still angry about their surgery six years later, and they’re concerned about Dr. Rumer operating on trans people. But they say that their frustration is also directed at the systemic issues surrounding procedures like these: The lack of doctors who perform GRS and the lengthy waiting lists that mean people like them have few options to choose from and not enough information when they go looking for a surgeon.

Bottom surgery for both transfeminine and transmasculine people is multidisciplinary in nature, requiring plastic surgical, urological, and gynecological experience. Each of those disciplines have separate boards responsible for certification. Recent attempts to quantify the learning curve for vaginoplasty have indicated that 40 procedures need to be performed to truly learn the technique. Without a set fellowship or apprenticeship guideline from WPATH or any other professional body, there’s a broad range of standards for surgeries that patients will have to live with for the rest of their lives.

Individual hospitals are ultimately responsible for determining who has admitting privileges to perform certain procedures within their facilities. Dr. Schechter told Jezebel that hospital boards often require that a surgeon be certified by at least one of the 30 or so medical boards across the country and may have varying minimum training standards for potential surgeons. But according to Green, of WPATH, there are no medical boards that specifically certify individual surgeons for gender-related surgeries: “I badgered the surgeons to get the societies, like the plastic surgery society, to try to figure out how to make this training part of the boards’ examination, so you could be board certified,” he says. “Because right now, they don’t certify in specific disease conditions, so to speak.”

Currently the American Society of Plastic Surgeons has general board certification, but nothing specific to gender-related surgeries, meaning affiliated surgeons wouldn’t have to meet specific training standards in order to operate on the genitalia of transgender patients. It’s an institutional framework that doesn’t fit the current challenges, says Green. “We now have urologists, gynecologists, and micro-surgeons of all kinds who are involved in genital reconstruction. So it’s much more complex than it used to be,” he says. “But no board has wanted to take this on.”

To try to fill the gap, people like Dr. Schechter and other doctors who specialize in gender-affirming care have come together to argue for a more standardized training system for hospitals looking to expand into the field. In 2017, Dr. Schechter co-wrote an article in the Journal of Sexual Medicine laying out some training minimums for prospective surgeons.

According to the report, surgeons offering gender-affirming surgeries should undergo extensive training, including seminar, office, practical, and aftercare sessions, as well as ongoing continuing education. While these guidelines would improve the training quality across the country, it remains voluntary for individual hospitals and surgeons. Non-profit organizations like WPATH have traditionally tried to fill the need for training but lack the capacity to institute systemic changes on their own. The organization runs its own surgical trainings, which began under Green’s presidency from 2014 to 2016. But running a training can be prohibitively expensive for an organization like WPATH, and attending the training remains optional and unpaid for surgeons who actually want to do the work.

Some, like Gaines Blasdel, a consultant who worked in an LGBTQ primary care center helping patients access gender-affirming surgery and who organized the open letter to WPATH in 2018, suggest a “centers of excellence” model, in which insurance companies and professional organizations collaborate to ensure insurance would only be paid out to surgeons who participated in a dedicated program. (He says the model combatted similar problems within bariatric surgery in the early 2000s, providing concrete outcome data and tightening restrictions on a surgery once struggling with similar issues.) Blasdel notes that while several medical facilities have recently begun calling themselves “transgender centers of excellence,” there are no current criteria the surgeon or facility must meet in order to earn that designation.

Before the explosion in insurance coverage in the late 2010s, most surgeons operated on a cash basis, which forced them to compete in an actual marketplace. Rather than focusing on producing the best possible patient experience, the marketplace model encouraged these surgeons to become sales people for their own work. “They went to all these conferences and stuff essentially to do marketing promotion of their work,” says Green. “People don’t want to talk about complications in their marketing presentations.”

Such was allegedly the case for Dr. Rumer at the 2018 Philadelphia Trans Health Conference, where the doctor gave a presentation covering several surgeries for transmasculine people. According to a complaint submitted to the Pennsylvania State Medical Board and shared with Jezebel, Dr. Rumer allegedly claimed a 1 percent complication rate for fistula and stricture following urethral lengthening, one of the procedures commonly performed as part of phalloplasty, the surgery which creates a functional penis for transmasculine trans people.

According to several studies, the industry average for those complications range between 10 percent and 64 percent. The letter, which contained the corroborated accounts of several conference attendees, called into question the accuracy of Dr. Rumer’s miraculous claim. It also alleged Dr. Rumer used pictures of another surgeon’s results, claiming them as her own. When a person in attendance confronted her about the images, she allegedly replied, “you have a good memory, have a nice day.” After a nine-month investigation, the medical board “determined that the circumstances, in this case, do not permit formal prosecution,” as per a response to the complaint shared with Jezebel. The letter did say the office had “reminded Dr. Rumer about the duties and requirements” under state law and her local medical board.

According to Blasdel, accurately tracking outcome data is key for trans people to make an informed surgical decision, and that data collection isn’t happening. “There’s still this sort of very wide variation in how the surgeons are collecting that information and then how they’re reporting it,” he said in an interview last year with Jezebel. “So people can’t really compare one surgeon to another in that context. People really have to go on gut feeling.”

“People will always make the choice of fast and cheap over good in some cases,” he added more recently. “It’s their body and their right.” But to make an informed choice about their bodies, he says, trans people would need more information about what happens when surgeries go awry. Within the trans and medical communities, he says, “Everyone is really not sure how to present that information and not sure what is going to happen when that information does get fully presented.” he says.

Green favors a national coverage determination, a statement from the Center for Medicare and Medicaid Services which acts as a guidance for coverage throughout the health insurance industry. Without that key element, insurance coverage questions are left to regional decision boards, often comprised of insurance company representatives and public health officials who may harbor anti-trans beliefs they want to institutionalize. On June 12, a newly finalized HHS rule which eliminated gender identity non-discrimination protections within the Affordable Care Act recently garnered over 200,000 public comments. Now that the rule is being implemented, insurance companies will again be allowed to sell policies with blanket exclusions for “transsexual surgeries.” Within such a highly politicized regulatory environment, innovation and reform become exceedingly difficult.

And according to Green, there’s little incentive for university hospitals and other medical research centers to invest in research and training on trans-related health issues if the government could turn around tomorrow and end multiple funding sources on the whims of an ideologically driven political appointee.

For the people Jezebel spoke to who said they experienced poor surgical outcomes, there wasn’t much opportunity to get answers. With several different possible medical boards certifying surgeons performing gender-related surgeries, no single board feels responsible for the bad experiences of trans patients. Many felt that going public about poor results may make it less likely for other surgeons to take on revisions, while official complaints to individual hospitals and state medical boards were lost in bureaucracy, misunderstood, or simply ignored.

Malpractice suits remain an expensive last resort, and can be difficult to litigate: the law and medicine haven’t yet found consensus on what constitutes malpractice in trans-affirming surgeries. With no central database for reviews or information of trans-related surgical providers, trans people often depend on word of mouth between friends, social media, or trans-related message boards for feedback. And even then, website administrators are sometimes nervous to host negative remarks against a specific surgeon, fearing a potential libel suit. On the trans-focused message board Susan’s Place, one of the only centralized repositories of reviews for surgeons, warnings against libel abound, particularly in the Facial Feminization Surgery sub-forum.

Fear of expensive and time-consuming legal challenges based on patient testimonies are not unfounded: Dr. Rumer and her legal team directed letters to me questioning the “integrity of your inquiry and article,” declined to answer factual questions, and eventually served me a subpoena in an attempt to gain access to my reporting notes and sources. When Jezebel reached out to request an interview and offered a detailed summary of patient complaints in early 2020, an attorney wrote back suggesting we were conspiring with the unnamed author of a Blogspot site dedicated to “exposing” Dr. Rumer. Since 2016 the blog has intermittently posted figures in Guy Fawkes masks, the doctor’s home address, and linked to public reports about the surgeon’s work.

Jezebel was unaware of this website when we began working on this story and all of the people interviewed said they had no prior knowledge of the blog. After learning of its existence, Carlie joked that she’s a graphic designer by trade and if she had made the site it wouldn’t “look so shit.”

Dr. Rumer’s practice filed a libel suit against the anonymous owner of the website in February of this year, named in court documents as John or Jane Doe. On March 11, the surgeon’s attorney attempted to subpoena me based on an unfounded assumption that I was coordinating with this John or Jane Doe.

“The timing, content, and nature of your emails suggest you are likely working with this individual (either knowingly or unknowingly) in carrying out this defamatory campaign,” wrote Dr. Rumer’s attorney in an email on January 31. “I note that while you are a self-described ‘freelance journalist,’ you utilize the pronoun the plural pronoun ‘we’ (e.g. ‘we obtained,’ ‘we were hoping’) in your messages. I hope you can appreciate that from our perspective, these facts understandably lead to questions about the integrity of your inquiry and article.” (By the time I reached out to Rumer for comment, we had been working on versions of this story intermittently for over a year, and the “we” was clearly meant to refer to the reporter and Jezebel together, as is common practice.)

The subpoena originally asked me to appear at the office of Dr. Rumer’s attorney in Ardmore, Pennsylvania on April 2, but was subsequently canceled because of the coronavirus pandemic. The subpoena demanded I turn over “all notes, emails, documents and research” referencing Dr. Rumer or her practice. In late July, the presiding judge ordered Rumer’s legal team to show just cause to continue the case, considering the “failure to allege the citizenship” of the anonymous website owner since the complaint was filed in January. Dr. Rumer’s attorney, Lance Rogers, wrote in a status report on July 31 that his office had additionally subpoenaed Google, CloudFlare—an internet service provider—and an unnamed domain registration site to gain access to the identity of the anonymous blogger, as well as retain the services of an expert in “advanced investigative computer techniques.” The case remains pending.

Legal threats haven’t only been directed towards anonymous trolls and reporters: Dr. Bowers shared a 2018 email written by Dr. Rumer alleging “written defamation” and threatening a libel lawsuit after the surgeon commented on Dr. Rumer in a consultation with one of Rumer’s former patients.

Rumer’s litigiousness isn’t unique among surgeons, and the environment can make it difficult for many trans people to find recourse, or warn others about bad surgical experiences. It’s a system that makes frank public discussion about surgical outcomes nearly impossible to have.

Some anti-trans activists create opposition to access to trans-affirming care by claiming treatments are experimental or too risky to be ethical, another obstacle when patients consider speaking openly about their experiences with individual surgeons. Though regret rates remain low and, and as Dr. Schechter says, “the risks and the complications are commensurate with the risks and complications of other similar procedures,” anti-trans disinformation has become a serious problem in many corners of the media.

In the summer of 2018, the group of trans people who had surgery with Dr. Dugi in Portland met with OSHU to discuss how the hospital could provide more trauma-informed care for its trans patients. An anti-trans campaigner named Walt Heyer, according to several people involved, acquired notes from the meeting between patients and the hospital under false pretenses, promising legal help and support for detransitioning to one of the complainants. It was help that never materialized. In late 2018, Heyer published the contents of the complaint he received in The Federalist, accusing the hospital of exploiting Medicaid patients to give Dr. Dugi early experience performing the procedure so he could move on to more lucrative patients.

Heyer’s publication of the OSHU complaint put a serious dent in talks with the hospital, and shocked the post-op patients who had been looking to start a dialogue with the hospital. “The most active members of the group left,” says Danielle, including herself and a dozen others. For her, the violation of privacy was painful. “It was mortifying,” she says, noting that she never gave Heyer permission to publish her complaint. “That took away my agency, changing around my story like that.”

Heyer disputes the claim that he obtained the notes under false pretenses, telling Jezebel his Federalist article ended up resulting in “blowback” against his source, who in turn declined legal help to avoid further conflict. But Danielle says “this whole thing just sabotaged a whole year of work within the Portland trans community,” adding that while things didn’t “turn out ideally,” she doesn’t regret her surgery.

In a time when the Trump administration threatens to roll back a decade of progress around trans access to insurance coverage and Medicaid reimbursement, some worry about anti-transition media crusaders leveraging trans medical horror stories into political opposition against transitioning itself, as Heyer did.

Some worry about anti-transition media crusaders leveraging trans medical horror stories into political opposition against transitioning itself

After her experience with Dr. Rumer, Carlie decided against a malpractice suit and tried to spread warnings about the surgeon on her own. She says she initially turned to Reddit to post about her experience with Dr. Rumer, but then trans exclusionary radical feminists (TERFs) ended up sharing her post in the GenderCritical sub-reddit, a recently banned forum that had become ground zero for TERF rhetoric. “I’ve had all of this story, you know, weaponized against me,” she says. “It’s been a fucking nightmare.” She deleted her post to avoid more attention from anti-trans fanatics.

Conservative scaremongering against transition-related surgeries have directly led to eight states introducing bills which would criminalize doctors who provide transition care to minors. Cis people generally associate transitioning with extensive surgeries, but transition-related surgical procedures are very rarely approved for trans people under age 18. Regardless, restricting access to these procedures is not the answer when there are reforms that could be made to the existing system in order to improve it.

“One of the ways we create uniform standards has to be an open exchange of ideas,” says Dr. Ting, of Mt. Sinai. “There needs to be a national organization of healthcare professionals. And I think at some point there will be a governing board of some form, probably in the next five to ten years. Something like cardiac surgery or plastic surgery has.”

When I asked Green about the varying quality of standards in the current landscape, he told me it was because of our medical system: It’s “because of the decades of anti-trans bias that has existed,” he said. “It’s the insurance system, it’s the way people get paid. It’s who decides how the operating theater in the hospital is going to be used, what kind of surgeries they are going to do.”

“They make those decisions and we have to just live with it,” he said, “and work around these things.”

None of that matters to Carlie, who has scuttled plans for other transition-related surgeries, like facial feminization, thanks to her experience with Dr. Rumer. “I wasn’t going to get any restitution on my bit,” she says. And pursuing formal action against the surgeon “isn’t going to do anything to make up for what happened.”

“I should have done more,” she says, “but I just had to move on with my life.”

This story has been updated to more accurately reflect the outcome of Hannah Simpson’s surgery.

(Updated 3/2/22 with new details)

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