Medical groups are expressing deep concern about the sudden removal or alteration of government data sets and webpages from agencies like the Centers for Disease Control and Prevention (CDC) and Food and Drug Administration (FDA) at the behest of President Donald Trump’s administration.
The American Cancer Society, a non-profit organization dedicated to eliminating the disease, called on the administration to “restore access to comprehensive data, refrain from changes that would lead to incomplete future data collection and commit to ensure evidence-based science can proceed without additional bureaucracy or red tape” in a statement published on its website on Thursday.
“Any restriction to gather and release these data could thwart our ability to address and reduce the cancer burden across all communities,” interim CEO Dr. Wayne A. I. Frederick said in the statement.
The organization highlighted the removal of the Social Vulnerability Index, which uses U.S. census data to identify county-level risk and vulnerability factors facing communities, taking into account poverty, race, disability, housing and more, according to the CDC.
“Data from public sources like the Social Vulnerability Index are key to deploying the right resources to those who could benefit the most,” the group said. “Therefore, any barriers to accessing these data can also have repercussions on planning and deployment of support services for cancer patients and survivors.”
The Trump administration transition team didn’t immediately respond to ABC News’ request for comment.
Across the federal government, webpages and datasets were removed or altered following Trump’s executive orders on diversity, equity and inclusion (DEI) and transgender identities called for an “end” to any related policies within the federal government.
Webpages about HIV, LGBTQ+ people and multiple other public health topics were taken down. Some of the terms being flagged for removal include pregnant people, chestfeeding, diversity, DEI and references to vaccines, health and gender equity, according to officials at the Centers for Disease Control and Prevention who spoke to ABC News on the condition of anonymity.
Several data tools were also removed or modified, according to Frederick.
Frederick said data collected by a plethora of federal and state agencies play a key role in many of the organization’s reports and publications, including the agency’s “Cancer Statistics, 2025” report and its companion, the “Cancer Facts and Figures” report.
The organization’s reports provide up-to-date trends on cancer occurrence, survival, symptoms, prevention, early detection and treatment, Frederick said.
In this undated stock photo, the logo for The American Cancer Society is seen on a phone screen.
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“ACS develops guidelines for cancer screening and prevention, informed by the latest available data and evidence, to meet the needs of clinicians, the general public, and policy,” he said. “We are very concerned that the changes in data collection and dissemination have the potential to impact these efforts in the future.”
The organization is concerned about how the scope and impact of data removal and potential long-term changes to data collection will impact its research capabilities.
The ACS warning came just days after the medical nonprofit group Doctors For America filed a lawsuit against several Trump administration agencies over its sudden removal of health information from multiple government websites.
The suit targets the Office of Personnel Management and the Department of Health and Human Services (which controls the CDC and FDA), asking a federal court in Washington, D.C. to order the government to restore the webpages and datasets.
ABC News has reached out to the agencies for comment.
In a statement to ABC News, the CDC confirmed that changes “to the HHS website and HHS division websites are in accordance with President Trump’s January 20 Executive Orders, Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government and Ending Radical And Wasteful Government DEI Programs And Preferencing.”
The Office of Personnel Management provided guidance on both executive orders, prompting HHS and divisions to respond accordingly, the spokesperson stated.
In a separate emailed statement to ABC News, the CDC’s SVI coordinator also attributed the online restrictions to the HHS “pause on mass communications and public appearances that are not directly related to emergencies or critical to preserving health.”
In this undated stock photo, signage for the Center for Disease Control and Prevention is shown.
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It said the pause will be brief, “to allow the new team to set up a process for review and prioritization.”
In the lawsuit, Doctors for America expressed concerns that the lack of data “creates a dangerous gap in the scientific data available to monitor and respond to disease outbreaks, deprives physicians of resources that guide clinical practice, and takes away key resources for communicating and engaging with patients.”
Asked last Friday afternoon if government websites would be shut down to be scrubbed, the president said it wouldn’t be a “bad idea.”
“DEI … would have ruined our country, and now it’s dead. I think DEI is dead,” Trump said. “So, if they want to scrub the website, that’s OK with me. But I can’t tell you.”
ABC News’ Youri Benadjaoud and Peter Charalambous contributed to this report.
