More than 500 legislative proposals in 49 states are targeting trans people—predominantly youths—prompting fear among patients, healthcare providers, advocates, and legal experts that trans and gender nonconforming patients will be excluded from care.
According to translegislation.com, a legislation tracker, 80 such state bills have been signed into law.
Studies show that transgender and gender nonconforming patients are reluctant to seek cancer care. And now, nearly identically worded pieces of legislation churned out by Alliance Defending Freedom, the Family Research Council, the Liberty Counsel, the American Principles Project, and other extreme right groups, threaten to deepen health disparities among these patients.
At a time when cancer centers are focused on reducing disparities, anti-trans legislation and court rulings are part of a concerted attack on gender-affirming care:
- In April, Missouri passed a law that essentially bans gender-affirming care for all transgender people, regardless of age.
- Florida recently passed a law that bans insurance companies from covering gender-affirming care in adults. The law, which was narrowly blocked by courts, is similar to legislation moving forward in other states.
- In Tennessee, ostensibly in an effort to investigate whether state funds went toward gender-affirming care, the Attorney General’s Office successfully obtained, from Vanderbilt University Medical Center, the medical records of patients who are trans.
- 303 Creative LLC. v. Elenis, a recent ruling by the U.S. Supreme Court, allowed creative businesses to discriminate against LGBTQ+ people, a move that experts fear could lead to discrimination against sexual and gender minorities in the healthcare setting (The Cancer Letter, July 14, 2023).
“We know that there are delays in care within the LGBTQ community, and these are likely to worsen that,” said Don Dizon, director of the Pelvic Malignancies Program and Hematology-Oncology Outpatient Clinics at Lifespan Cancer Institute, director of medical oncology at Rhode Island Hospital, and founder of the Oncology Sexual Health First Responders Program.
These laws prevent doctors from having open, honest conversations with their patients, Dizon said.
“Take a transgender female who still has a prostate—if no one ever asks her, ‘Do you have a prostate?’ then there may never have been an opportunity to screen for prostate cancer, and she runs the risk of not only developing it, but not having it caught early,” Dizon said to The Cancer Letter.
The laws will foster medical mistrust, said NFN Scout, executive director of the National LGBT Cancer Network.
“The biggest danger with all of this legislation is that it is rapidly accelerating the medical mistrust and eroding the basis of that dignified and high-trust relationship you want to have with your provider during your cancer treatment,” Scout, who is nonbinary and trans, said to The Cancer Letter.
Dana Kivel, a nonbinary patient with cancer and professor and director of recreation, parks and tourism administration at California State University, Sacramento, said trans and nonbinary patients with cancer are especially vulnerable.
“[These laws] have a disproportionately negative impact on people who have a cancer diagnosis,” Kivel said. “I think that’s important to recognize, and for healthcare providers to be very aware of this impact.”
Though the laws primarily target youths, they have also begun affecting care for adults.
“There are definitely already ways in which we are hearing and seeing adults having their ability to access care restricted in ways that are often a ripple effect of the attempts to ban care for minors,” Alexander Chen, founding director of the LGBTQ+ Advocacy Clinic at Harvard Law School, where he also teaches gender identity, sexual orientation, and the law, said to The Cancer Letter.
It’s difficult to quantify the inequity that already beleaguers trans and gender nonconforming patients.
One study published in JAMA Oncology found that patients with breast cancer in sexual and gender minority groups “had delays in diagnosis, declined oncologist-recommended therapies more often, and experienced a 3-fold higher rate of breast cancer recurrence, compared with cisgender heterosexual patients.”
Kiara St. James, co-founder and executive director of the New York Transgender Advocacy Group, who is also a trans survivor of cancer, said she knows several trans women whose diagnoses of cancer have been delayed because of barriers to care.
She knows one woman of trans experience who noticed a bump on her scrotum, and held off on seeing a doctor.
“She was also embarrassed to tell her doctor about it, because she’s like, ‘I’m a woman of trans experience, and I’m talking about having a bump in my scrotum,’” St. James said to The Cancer Letter. “That kept her from getting an earlier diagnosis. By the time she got her diagnosis, the cancer had already spread. Now she’s dealing with radiation necrosis because it spread to her brain.”
Trans patients with cancers that affect their genitals are specifically vulnerable, St. James said.
“It keeps a lot of us from having these real honest conversations with our doctors because we don’t really want people to touch us down there, especially if they’re not our intimate partners,” she said. “It also is a main reason why cancer goes untreated for so long in the trans community—because there’s that fear of, I just can’t go into the hospital and tell them I’m having these issues in my genital area, because it’s going to feel awkward.
“You’re going to have all these different strangers coming in and taking a look at your genitalia area, and you’re going to feel really violated. That would be a barrier for me as well.”
These laws could exacerbate issues that patients who are trans have faced their whole lives, oncologist Dizon said.
“What I fear with these laws enacted—people will not be able or not willing to restart gender-affirming hormone therapy,” Dizon said. “Which is just tragic because you are essentially in a position where you can impose gender on someone you are supposed to be in a therapeutic relationship with.”
Receiving gender-affirming care as a minor reduces adverse health outcomes “because it just meant that they could not be forced to go through the puberty that traumatized them,” Scout said to The Cancer Letter.
“Their longer term outcomes and health disparities much more resemble the non-trans population than the wildly unstable and beleaguered health issues in the trans community,” they said.
Patients who began hormones as minors would not have to face that traumatizing puberty, Scout said.
“They are not going to have nearly the health disparities that my generation has,” they said. “But of course, these laws have effectively stopped that from being the reality we can see for many years in the future.”
Zul Surani, associate director of Community Outreach & Engagement at Cedars-Sinai Cancer, said anti-LGBTQ+ bills harm patients.
“The Supreme Court [303 Creative LLC. v. Elenis] decision, during a time when a wave of anti-LGBTQ+ bills is sweeping the country, is making a segment of our catchment area communities second-class citizens,” he said. “Cancer centers are charged with ensuring equity in cancer prevention, control and care for all Americans, and this is the time when we have to step into our power and organize for inclusion and justice at all levels of our society.”
Oncology leaders agree.
“There is evidence that people in general who face more social stress have greater overall illness burden and worse outcomes,” Clifford Hudis, CEO of the American Society of Clinical Oncology, said to The Cancer Letter. “Any action, even broadly, that erodes anti-discrimination protections, has the potential to exacerbate those existing disparities and worsen a community’s access to services.”
Karen Knudsen, CEO of the American Cancer Society and its advocacy affiliate, the ACS Cancer Action Network, said ACS will continue to advocate for LGBTQ+ patients.
“We believe that every person, regardless of their race, color, national origin, gender identity, sexual orientation, age or disability deserves to be given equal access to timely, quality, comprehensive health care without discrimination,” she said.
“Black trans women also are at risk of cancer”
New York Transgender Advocacy Group’s Kiara St. James, a Black trans woman and New York City resident, was treated for stage 2 anal cancer at Mount Sinai.
New York doesn’t have any laws that restrict gender-affirming care.
St. James said the side effects she experienced might have prevented someone who is trans from seeking the care that saved her life.
As a result of the chemotherapy, her face grew swollen.
“I didn’t even recognize myself when I looked in the mirror,” she said. “It made me feel sexless. I just felt like a monster.”
St. James’s hair, which she associates with her femininity, began to fall out in clumps.
“That was impacting me mentally,” she said. “That was definitely traumatic for me.”
The change in one’s appearance is another barrier for trans people who are going through cancer treatment, she said.
“That’s something else that was hard for me to deal with—not feeling attractive, not having my energy level up,” she said. “It was very, very traumatic for me, even though I knew the chemo was to help me. I couldn’t even look at myself in the mirror without feeling disgusted.”
Still, St. James recognizes that people in red states might not receive the same quality of care that she did.
“When I speak to those trans folks who live in those states that are red states—the type of care they get depends on if they’re full-time employees as opposed to being unemployed,” St. James said. “It’s dependent on if they’re working for a LGBTQ nonprofit organization that makes sure that they get health care provided as part of their insurance.”
Insurance coverage can be a barrier anywhere, she said.
“All those are factors when you live in a red state, I should say, when you live outside of New York City,” she said. “Even in New York State, even in New York City, actually, I’ve heard of community members who have been in other hospitals and have not had a good experience.”
The most frustrating part of St. James’s experience wasn’t the side effects of treatment.
“My frustration comes because of my 20-plus years of being an activist, going to conferences—when I’m in these spaces, when they talk about Black trans women, the only thing they really talk about is Black trans women and HIV,” she said. “Nobody talks about—‘Black trans women also are at risk of cancer.’”
Along with her organization NYTAG, St. James is coordinating a trans wellness summit that will raise awareness about cancer risk in people who are trans.
“One of the things I want to make sure we’re talking about at the trans women summit is not just HIV and PrEP, but cancer, stroke,” she said. “All of these things are happening in my community right now, but the main focus is just HIV. The trans wellness summit is going to be to address that.”
A new crop of laws
Bills banning gender-affirming care in minors started to appear in state legislatures in 2020, said Naomi G. Goldberg, deputy director and LGBTQ Program Director of the Movement Advancement Project (MAP), an independent, nonprofit think tank that tracks anti-trans legislation.
Since then, these laws have expanded in scope, Goldberg said.
“When you look specifically at the kinds of legislation that’s being introduced, as well as some of the bills that have actually made it into law, you see a lot of expansion in what they ban,” Goldberg said. “Some of the key themes that we see—we saw bills, thankfully, none of which passed, but we saw bills introduced over the last couple of years that expanded the age of the ban.”
States like Florida are not alone in aggressive legislation against trans and gender-nonconforming patients. In 2023, nearly three in 10 (29%) bills introduced would ban or restrict care for both transgender children and transgender adults, according to a report published by MAP.
According to MAP, newer bills are more aggressive:
- Oklahoma’s HB2177 would effectively ban best practice medical care for all transgender people in the state. The bill bans medical providers from providing such care for minors, and it also bans private insurers from covering this care regardless of age.
- Kentucky’s 34-page HB470 seemingly combined almost every anti-transgender healthcare provision into one bill. It would have banned both best practice medical care for transgender youth, and even mental health care and social transition support. The bill banned mental health providers—including therapists, social workers, school counselors, and more—from providing “social transition services…including but not limited to affirming the person’s name change, pronoun adoption, dress and grooming, and sex-role specific behaviors that vary from those behaviors typically associated with the person’s sex.” While the bans on social transition and mental health care were removed in committee, the amended bills would still ban medical care for minors and state funds from providing or reimbursing care for minors, among other provisions.
- Florida’s S254 would allow the state to take custody of children “at risk of being subjected to” best practice, gender-affirming care, or even to take custody of children if they have a transgender sibling or parent. Even families who do not live in the state but who are visiting for work or perhaps to visit family or Disney World could have their children seized by the state. The bill would also allow the state to void, ignore, or change child custody agreements issued by courts in other states if Florida believes the child in question is “at risk” of receiving medically necessary transgender-related care.
- While not legislation, the unprecedented “emergency” regulation issued by Missouri’s unelected attorney general in April 2023 represents the most extreme and comprehensive attack on transgender people’s health care yet seen. The regulation effectively bans gender-affirming care for all transgender people regardless of age, though the rule will expire in February 2024 and will certainly be challenged in court before then.
Measures that seek to eliminate insurance coverage for trans care are becoming increasingly common, Goldberg said.
“We know for example, that there are states now that have passed laws that explicitly say state Medicaid can’t cover [gender-affirming care],” Goldberg said. “That’s true in Florida, for example, and in Texas, and in Missouri. We know that there are states that have explicitly said, state employees, even adults—‘we’re not going to cover this.’
“[These laws] really tie the hands of insurers to continue to provide best practice medical care,” Goldberg said. “It also ties the hands of employers, for example, who want to make sure that they are doing the best that they can for their employees and their employees’ children.”
The wording of these laws is vague and confusing on purpose, Chen said.
We need to stand there as beacons saying, we exist, and we are who we are, and we are a testament that you can overcome adversity and you can belong.
Don Dizon
“If you read [the Florida law] and you said, ‘I thought you marketed this as just being about minors, but now somehow it also affects all insurance. Is it supposed to do that?’” Chen said to The Cancer Letter. “The ambiguity is part of the point, because, in fact, that is their goal. They know that it’s not politically saleable, and that the majority of Americans do not support that. And so they are trying to say it’s only about kids, but they’re trying to expand it.”
Before introducing laws that ban care for trans youths, the organizations behind these bans had tried popularizing hot-button anti-trans policies that weren’t popular—introducing bathroom bans and trans identification card bills.
“They’ve zeroed in on these micro-targeted areas, but the goal is ultimately to roll back care for everybody,” Chen said.
The groups behind these bills are borrowing from methods they used to roll back reproductive rights when Roe v. Wade was overturned last year (The Cancer Letter, July 1, 2022), Chen said.
“Reproductive care access is a good place to look if you want a little bit of a understanding of the playbook of what’s happening right now when it comes to LGBTQ+ healthcare, especially transgender care, and what the future of that’s going to look like—because the connection is not just thematic, it’s also concrete in the sense that the same groups are pivoting,” Chen said. “The goal is ultimately to roll back care for everybody.”
Though the laws are relatively new, trans people have always faced difficulties accessing gender-affirming care, Chen said.
“People should not make the mistake of thinking that prior to these bans, the majority of transgender people had access to gender-affirming healthcare that was medically necessary, because that is unfortunately not true,” he said.
The ideas behind the anti-trans bills proposed in states are not new, Chen said.
“In this country, we have for a long time had a two-tiered system where there are certain kinds of healthcare that everybody just agrees ought to be paid for—there’s no question or contest about it—and then there are other kinds of healthcare that our country refuses to pay for, even when healthcare professionals agree that individuals need that care,” he said.
Transitioning with a cancer diagnosis
California resident Dana Kivel was diagnosed with a granulosa cell ovarian tumor in 2011, receiving treatment at Kaiser Permanente in Sacramento, CA.
The tumor, which was removed laparoscopically, ruptured during the procedure.
“The doctors did come to tell me the next day, ‘We washed the omentum, we’re 99% sure we got everything,” they said. ‘We know we got it.’”
In 2015, the same year Kivel was scheduled to receive a double mastectomy so they could begin the process of medically transitioning, they doubled over in pain. The tumor, thought to have been removed, had metastasized.
The proposed treatment this time was aggressive surgery. In June 2015 doctors removed several tumors and Kivel’s appendix. In fall 2015, Kivel received a bilateral mastectomy.
The tumors returned again in January 2017, this time to their lower intestine. After several surgeries, doctors proposed chemotherapy. Historically, chemotherapy is not an effective treatment for granulosa cell tumor, Kivel said, but they gave it a shot anyway.
Kivel received chemo in the spring and summer of 2017. As of February 2018, the tumor had returned. Subsequently, in 2019, scans showed tumor was growing in size and had spread further.
In early 2020, surgery again appeared to be the best option. A foot-long section of their colon was removed as well as a portion of their omentum.
“I had a CAT scan not long after, and it showed that I had another small tumor,” Kivel said.
Nearly out of options, and after having been treated for a blood clot that resulted from one of the surgeries, Kivel had the tumor tested again in 2020. The cancer, which had been estrogen-negative at first, was now estrogen-positive. This opened the door for treatment with estrogen-blocking aromatase inhibitors.
The treatment was effective. The blood marker for their cancer, INHBB, also dropped dramatically.
In the middle of treatment, around 2016 or 2017, Kivel spoke with their primary care doctor about taking hormones to transition.
“Then they talked to an endocrinologist in San Francisco, and basically they reported back to me that there’s just not enough research to show that this wouldn’t have a negative impact,” they said.
They hadn’t been involved in the conversation with the endocrinologist, and weren’t sure who that doctor was to begin with.
“I couldn’t ask, really, for better doctors, but in this particular instance, it felt very disempowering,” they said. “It would’ve been better if my primary care had said, ‘Hey, Dana, what if we all got together, you, your gynecological oncologist, and the endocrinologist, and talked about it.’”
Given that there’s a lack of data collection for LGBTQ+ patients with cancer, and given the rarity of Kivel’s tumor, there is not much research on the impact of testosterone on people with granulosa cell tumor ovarian cancer.
“Nobody has said, ‘Absolutely you can’t do it,’” Kivel said. “I mean, I could do it, but their professional medical recommendation, given the kind of cancer I have and given the unknowns, has said, don’t do it.
“But they must know something, because there are plenty of people assigned female at birth who have transitioned, who have had ovarian cancer—and I’m just wondering about the interactions of testosterone in their treatment,” they said.
Kivel has recognized that they may not get the chance to take testosterone.
“If I got to a point where this medication resulted in no evidence of disease for five years, I might think about taking that,” they said. “But I’m also getting older. I’m 62 now, but it’s been so long since there’s not been any evidence of disease.”
For now, Kivel has come to terms with their gender identity.
“I was grateful that I had the bilateral mastectomy,” they said. “I feel like I’ve had to do a lot of reconciling that this is who I am, this is how I present and, and really take in that I’m going to identify as non-binary.”
Having grown up in Tyler, in Smith County, TX, Kivel can empathize with trans and gender nonconforming patients in states that are not welcoming to LGBTQ+ people.
“We got threatened, we got harassed,” they said. “I know those places. And it’s horrible. I mean, it was horrible then. And then I felt like things were getting better, and now I feel like again, we are going backwards, and that is just so painful and hard to see.”
Medical mistrust
“If you have a high level of medical mistrust, then when your doctor says, ‘You really should do this,’ your response may be suspicion instead of adherence,” National LGBT Cancer Network’s Scout said. “What we fear is that once we finally get enough data to research this across different types of cancer and different types of people—we will find medical mistrust has a huge negative impact in cancer outcomes.”
The absence of data on sexual and gender minorities is a problem, too, oncologist Dizon said.
“Even the association between gender-affirming hormone therapy and endocrine-associated cancers is not clear,” Dizon said. “I think part of the reason is going back to the biggest part of inequality—we’re not even collecting sexual orientation and gender identity data in a standardized way, and so, our understanding of even that topic is limited.”
Scout agrees.
“There are a lot of hormone-interactive cancers, and one of our ongoing challenges is that lack of data makes it hard to get research funded, which then means there’s no guidance on how to treat those of us who have hormone-interactive cancers,” they said.
How should an oncologist respond if a patient decides to medically transition? Anti-trans laws prevent informed decision-making, Dizon said.
“If someone is a trans man and develops ovarian cancer that you test and has androgen receptors on it, you might not only say it’s not safe for you to start testosterone,” Dizon said. “But biologically your sex at birth was female and we should realize your true sex because that’s what, now, the state law requires.”
Ideally, even in the face of the unknowns, the decision to go on hormones would be made in partnership between a doctor and patient, Dizon said.
“You can say, ‘If you would like to restart testosterone, I don’t know about the safety of this, but I’m totally willing to follow you as we move forward,’” Dizon said.
Basic steps
For all intents and purposes, St. James had a positive treatment experience at Mount Sinai, but there were uncomfortable moments.
Hospitalized for months after her red blood cell counts had grown dangerously low because of radiation, St. James interacted with plenty of doctors outside of her oncology care team.
One doctor asked her whether she was pregnant.
“I’m thinking, obviously he didn’t read my medical report,” she said. “He was like, ‘Well, I just want to tell you the side effects of radiation that you might experience. You might experience the tightening of the vagina wall.’ And I’m like, ‘Is that a bad thing?’”
St. James laughed it off—”Even while I was going through my radiation therapy, I still had a sense of humor.”
“It was him and four others—they’re all male doctors—and they’re kind of with these smirks on their faces, because they don’t know how to respond to that,” she said. “I have other doctors who say ‘I see that you are of trans experience.’”
When St. James first met her radiation oncologist, she told him about her background.
“‘My name is Kiara St. James. I’m a founder, the director of New York Transgender Advocacy Group. I’m a Black woman of trans experience,’” she told him. “That’s when he told me he was gay. ‘I’m also part of the rainbow family,’ that’s how he put it.
In this country, we have for a long time had a two-tiered system where there are certain kinds of healthcare that everybody just agrees ought to be paid for—there’s no question or contest about it—and then there are other kinds of healthcare that our country refuses to pay for, even when healthcare professionals agree that individuals need that care.
Alexander Chen
“Just because someone’s part of the rainbow family doesn’t mean that they are inclusive of trans people, but he was very, very welcoming. His bedside manner is what you would want somebody to be—compassionate and sympathetic toward you.”
Signage can be helpful, too. “There’s a picture I remember from years ago and it was like—these people are trans,” St. James said. “Some of them looked like, women of trans experience adhering to a binary, men of trans experience adhering to a binary. But there were women of trans experience who didn’t look like the other women of trans experience, but they were still trans, likewise for the men.”
It’s crucial for cancer centers to have information for trans patients on their websites, Scout said. However, an analysis conducted by the National LGBT Cancer Network in 2022 found that, during Pride Month, almost one third of all NCI-designated cancer center websites lacked any visible indication that they were welcoming of trans patients. And, according to an article published by Scout in the journal Cancer Discovery, more than 25% of NCI-designated cancer centers do not have sexual orientation or gender identity protected in their posted nondiscrimination statements or patient bills of rights.
“If you are not taking basic steps to show us that we’re safe, putting something on your website, putting something in your physical environment, doing the data collection in a thoughtful way, having pronouns on your lanyards, respecting pronouns, respecting our real names, those basic steps—then right now, I’m sorry to say that you’re contributing to our ongoing health disparities,” Scout said.
The LGBT Cancer Advocacy Network offers a training, Welcoming Spaces, that fosters inclusion for LGBTQ+ patients.
For Dizon, being open about his identity helps combat medical mistrust and harm imposed by anti-LGBTQ+ bills.
Recently, he tweeted the following:
“I’m a non-Ivy League trained Pacific Islander, gay and proud, father of three, and a professor of medicine,” he wrote.
“Those of us who are comfortable declaring our identities in an intersectional way—we should do that,” Dizon said. “We need to stand there as beacons saying, we exist, and we are who we are, and we are a testament that you can overcome adversity and you can belong.”
“I’m not saying that every person of the LGBT community in oncology needs to be public about it, but for those of us who are public, we need to provide ourselves as beacons, almost, in this society.
“And if I am here, then it means that we as a community matter. It means that we belong.”
St. James has been open with her friends about her cancer treatment. “‘Trust me, you don’t know what you have until you lose it,’” said St. James, who is now seven months out of treatment. “‘If you have your health, you’re richer than a lot of people who are billionaires and millionaires.’”
Recently, she and a group of friends attended a conference in New Orleans. St. James brushed off the complaints some friends had about high temperatures in the Pelican State.
“I’m like, ‘Baby, just go into the air conditioning, go back into your room,’” she said. “Like, I’m fine. I’m going to sit on this river boat and I’m going to take in this breeze.”
