The top U.S. cancer statistics authority will soon have to classify the gender of patients strictly as male, female or unknown, a change that scientists and advocates say will harm the health of transgender people, one of the nation’s most marginalized populations.
Scientists and transgender rights advocates say the change will make it much more difficult to understand cancer diagnoses and trends in the transgender population. Some studies have shown that transgender people are more likely to use tobacco products or less likely to undergo routine cancer screenings — factors that could put them at higher risk of the disease.
The change is a consequence of Trump administration policies that recognize only “male” and “female” genders, according to cancer researchers.
Scientists said the change would affect all cancer registries, in every state and territory, because they receive federal funding. Starting in 2026, registries funded through the Centers for Disease Control and Prevention and the National Cancer Institute will categorize cancer patients as male, female or not reported/unknown. And federal health agencies will only receive data on cancer patients classified this way.
Registries currently specify whether a cancer patient’s gender is “male”, “female”, “other”, various options for “transgender”, or that the patient’s gender is not reported or unknown.
President Donald Trump issued an executive order in January stating that the government will only recognize male and female genders. Cancer registry officials said the federal government has asked them to review how they collect data on cancer patients.
“In the US, if you’re getting federal money, then we’ve basically been given no choice,” Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries, told KFF Health News. NAACCR, which receives federal funds, maintains cancer reporting standards across the US and Canada.
Officials should classify patients’ gender as unknown when “the patient’s gender is documented as other than male or female (eg, non-binary, transgender) and there is no additional information about the sex assigned at birth,” the new standard says.
Missing the big picture
The researchers said they don’t have high-quality population-level data on cancer incidence in transgender people, but they’ve taken steps to improve it — work now at risk of being undone.
“When it comes to cancer and disparities around cancer, you can use cancer registries to see where the dirtiest air pollution is because lung cancer rates are higher in those areas. You can see the impact of nuclear waste storage because of the types of cancer that are higher in those zip codes, in those areas of the country,” said Shannon Kozlovich, the California executive committee.
“The more segments of our population we exclude from this data set means we’re not going to know what’s going on,” he said. “And that doesn’t mean it doesn’t happen.”
For decades, cancer registries have been the U.S.’s most comprehensive surveillance tool for understanding cancer incidence and survival rates and identifying worrisome disease trends. Each year, cancer cases are reported by hospitals, pathology laboratories, and other health facilities to regional and state cancer registries. The collected data document cancer and mortality rates across regions, races, sexes, and age groups.
Two federal programs serve as the leading authorities on cancer statistics, with information on tens of millions of cases. CDC’s National Cancer Registries Program provides funding to organizations in 46 states, the District of Columbia, Puerto Rico, the US Virgin Islands, and the US Pacific Island territories. Its data represents 97% of the US population. The National Cancer Institute’s Surveillance, Epidemiology, and End Results Program, known as SEER, collects and publishes data from registries covering nearly half the US population.
Information published by cancer registries has led to changes in treatment and prevention, as well as the establishment of other policies aimed at reducing diagnosis and mortality rates.
For example, data collected from cancer registries were necessary to detect increasing rates of colon cancer in people under 50 years of age. As a result, US guidelines now recommend that adults start screening at age 45 rather than 50.
States have established their own measures. Lara Anton, a spokeswoman for the Texas Department of Health, said epidemiologists with the Texas Cancer Registry found in 2018 that the state had the highest rates of hepatocellular carcinoma in the nation, a liver cancer more common in men than women. The Cancer Prevention and Research Institute of Texas has launched a statewide effort aimed at reversing rising rates of liver cancer. The Texas Cancer Registry joined SEER in 2021.
“Once a cancer patient is enrolled in a cancer registry, we follow those patients for the rest of their lives. Because we really need to know, are patients surviving for different types of cancer and different stages of cancer?” Durbin said. “This is incredibly important for public policies.”
The North American Association of Central Cancer Registries maintains national standards that describe the type of data registries collect for each diagnosis. It develops the list in collaboration with the CDC, the National Cancer Institute and other organizations.
For any given patient, according to NAACCR standards, Durbin said, registries collect more than 700 pieces of information, including demographics, diagnosis, treatment and length of survival. CDC- and NCI-sponsored registries must identify the gender of each patient.
The NAACCR definitions and accompanying data standards are designed to ensure that registries collect case data uniformly. “Everybody basically follows the standards” that the NAACCR develops, Durbin said. Although registries can collect state-specific information, the researchers said they must follow those standards when sending cancer data to the federal government.
In an emailed statement, Health and Human Services spokesman Andrew Nixon said: “HHS uses biological science to guide policy, not ideological agendas perpetrated by the Biden administration.”
“Backward” progress
NAACCR regularly publishes updated guidelines. But the change to the “gender” category to eliminate transgender options in 2026 was an emergency move because of Trump administration policies, Kozlovich said. He was among a group that had pushed for changes in cancer data collection to consider gender and gender identity as separate data points.
According to an analysis of CDC data by the Williams Institute at UCLA School of Law, 2.8 million people age 13 and older identify as transgender.
Scientists and transgender rights advocates have said in interviews that there are troubling signs that trans people may be more likely to develop cancer or experience worse health outcomes than others.
“Without data on our health disparities, you remove any impetus to fix them,” said Scout, executive director of the LGBTQIA+ Cancer Network.
A study published in 2022 found that transgender and gender diverse populations were two to three times more likely than cisgender people to report active use of cigarettes, e-cigarettes, or cigars. Tobacco use is the leading cause of cancer and cancer death.
A Canadian study concluded in 2019 that transgender patients were less likely to receive recommended screenings for breast, cervical and colon cancer. And a 2023 study by researchers at Stanford Medicine found that LGBTQ+ patients were nearly three times more likely to experience breast cancer recurrence than cisgender heterosexual people.
Scarlett Lin Gomez, an epidemiologist at the University of California-San Francisco and director of the Greater Bay Area Cancer Registry, said that for at least 10 years the NCI has been interested in improving its ability to track cancer burden in patient populations with diverse sexual orientations and gender identities. Cancer registries are a logical place to start because that’s what they’re set up to do, he said.
There has been “slow but good progress,” Gomez said. “But now, personally, I think we’ve completely regressed.”
The decision not to record transgender identity in cancer patients is just one change registries are facing under the Trump administration, according to scientists leading surveillance efforts and state health agencies. An HHS order to reduce contract spending led to funding cuts for cancer registries in the NCI’s SEER program. CDC funding for the registries has not been cut, the scientists said. However, the White House’s proposed budget for fiscal year 2026 aims to eliminate funding for the National Cancer Registry Program.
Among the Trump administration’s other actions targeting transgender people are canceling research grants for LGBTQ+ health studies, disbanding the National Institutes of Health’s Office of Sexual and Gender Minority Health, and ending specialized services for LGBTQ+ youth at the national 988 suicide prevention hotline.
Without data, researchers can’t advocate for funding research that can help transgender patients, Gomez said. “It’s erasing.”
