Top American cancer statisticians will soon have to strictly classify patients' gender as male, female or unknown. The change, according to scientists and patient advocates, will negatively impact the health of the transgender population, one of the most marginalized in the country.
Doctors and transgender rights activists say the modification will make it extremely difficult to understand cancer diagnoses and trends in this population group.
Some studies have found that transgender people are more likely to smoke and are less likely to be screened for cancer, factors that may increase their risk of developing the disease.
Cancer researchers explained that this change is a consequence of the Trump administration recognizing only “male” and “female” genders.
Scientists believe the measure will affect all cancer registries in the country – in every state and territory – as they all receive federal funding.
Beginning in 2026, registries funded by the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI) They must classify patients' gender as male, female, or unspecified/unknown.. And federal health agencies will only receive data from patients classified this way.
Currently records let me point you out If the gender of the cancer patient is “male”, “female”, “other”, different options for “transsexual” are offered, and if the gender is not specified or unknown.
In January, President Donald Trump signed decree which established that the federal government would only recognize male and female genders. Cancer registries said they have been ordered to change the way they collect data on cancer patients.
“In the United States, those of us who receive federal funds have had little choice,” Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries (NAACCR), told KFF Health News. This agency, which receives federal money, sets standards for reporting cancer cases throughout the United States and Canada.
Under the new rules, patients must be classified as “unknown gender” if they are documented as something other than male or female (such as non-binary or transgender) and there is no additional information about the sex assigned at birth.
Incomplete vision
The researchers noted that there is currently no high-quality population-based data on cancer incidence in transgender people. Although important progress has been made in improving this information, this work is now at risk of unraveling.
“When it comes to cancer and cancer disparities, you can use cancer registries to see where the air pollution is the most, because lung cancer rates are highest in those areas. You can see the impact of storing nuclear waste because of the types of cancers that are more common in these zip codes, in these areas of the country,” explained Shannon Kozlovich, executive committee member of the California Cancer Dialogue.
“The more segments of the population we exclude from this database, the less we will know what is going on,” he added. “And that doesn’t mean it’s not happening.”
For decades, cancer registries have been the nation's most comprehensive surveillance tool for understanding cancer incidence, survival rates, and identifying alarming trends.
Each year, hospitals, pathology laboratories, and other medical centers report cancer cases to regional and state registries. The data collected documents incidence and mortality rates by region, race, gender, and age.
Two federal programs are the primary sources of cancer statistics, containing information on tens of millions of cases. The CDC's National Cancer Registries Program funds organizations in 46 states, the District of Columbia, Puerto Rico, the Virgin Islands, and the U.S. Pacific Territories. Your information represents 97% of the population countries.
For its part, the National Cancer Institute's Surveillance, Epidemiology, and End Results program, known as SEER, collects and publishes data from registries covering almost half the population countries.
Information published by cancer registries has led to changes in treatment and prevention, as well as the promotion of other strategies aimed at reducing diagnosis and mortality rates.
For example, these data made it possible to identify increase in colorectal cancer cases between people up to 50 years. As a result, clinical guidelines in the United States are currently recommend that adults begin screening at 45 rather than 50.
Several states have also approved their own measures. Lara Anton, a spokeswoman for the Texas Department of State Health Services, said that in 2018, Texas Cancer Registry epidemiologists found that the state had the highest rates in the country of hepatocellular carcinoma, a type of liver cancer that is more common in men than women.
After that, the Texas Institute for Cancer Prevention and Research promoted government efforts reverse the rise in incidence. The Texas Cancer Registry joined SEER in 2021.
“When a cancer patient is added to the registry, we follow him for the rest of his life. Because we need to know whether people survive depending on the type and stage of cancer,” Durbin said. “This is critical to the formulation of public policy.”
The NAACCR provides national standards specifying what type of data should be collected for each diagnosis. These standards were developed in collaboration with the CDC, the National Cancer Institute, and other organizations.
The registries collect more than 700 data points per patient, including demographics, diagnosis, treatment and survival information, Durbin said. CDC- and NCI-funded registries must report patient gender.
NAACCR definitions and data standards ensure consistent data collection across the country. “Essentially, we all follow the standards that the NAACCR develops,” Durbin said. Although registries may collect specific data at the state level, they must follow these rules when reporting information to the federal government.
In an emailed statement, Andrew Nixon, a spokesman for the Department of Health and Human Services, said: “HHS uses biological science to guide its policies rather than ideological agendas, as the Biden administration has done.”
Failure
The NAACCR periodically publishes updates to its recommendations. But Kozlovich said the gender change, which would eliminate transgender options starting in 2026, was an emergency decision driven by Trump administration policies.
Kozlovich was part of a group that advocated for the inclusion of sex and gender as different variables in cancer information collection.
According to CDC Data Analysis A study conducted by the Williams Institute at the University of California, Los Angeles (UCLA) School of Law found that 2.8 million people over the age of 13 identify as transgender in the country.
Scientists and transgender rights advocates said in interviews that there are warning signs that this population may be at greater risk of developing cancer or face worse health conditions than others.
“Without evidence of our health inequalities, there is no incentive to correct them,” said Scout, executive director of the LGBTQIA+ Cancer Network.
A study published in 2022 concluded that transgender and gender diverse people were among two and three times are more likely than cisgender people to use cigarettes, e-cigarettes, or cigars. Tobacco use is one of the leading causes of cancer and cancer mortality.
AND Canadian study published in 2019 concluded that trans patients are less likely to undergo recommended screening for breast, cervical and colorectal cancer. And 2023 study A study conducted by researchers at Stanford University of Medicine found that LGBTQ+ patients were nearly three times more likely to have breast cancer recurrence than cisgender heterosexual people.
Scarlett Lyn Gomez, an epidemiologist at the University of California, San Francisco and director of the Greater Bay Area Cancer Registry, explained that for at least 10 years, the National Cancer Institute has sought to improve its ability to monitor the burden of cancer in populations with different sexual orientations and gender identities. He explained that cancer registries are a logical starting point.
“Progress has been made slowly but surely,” Gomez said. “But now, from my point of view, we have completely regressed.”
The decision not to collect information on cancer patients' trans identities is just one of many changes the registries have faced under the Trump administration, according to scientific watchdogs and government health agencies.
HHS' order to cut contracting costs resulted in reduced funding for NCI SEER program registries. Although CDC funding for registries has not been cut, the White House's proposed FY 2026 budget calls for eliminating funding for the National Cancer Registry Program.
Other anti-trans actions by the Trump administration include canceling grants for LGBTQ+ medical research, eliminating the National Institutes of Health's Office of Sexual and Gender Minority Health, and suspension of specialized services for LGBTQ+ youth National Suicide Prevention Lifeline 988.
Without data, researchers can't justify funding research that could benefit trans patients, Gomez lamented. “This is a way to erase their existence.”
