The Trump administration's decision to remove significant health-related data from government websites has raised alarm among researchers and healthcare providers who rely on this information for their work. On Friday, January 30, 2025, various online resources, including the Centers for Disease Control and Prevention (CDC) and U.S. Census Bureau websites, experienced outages or removed key datasets, stirring concerns about transparency and public health.
A group of researchers and students at the Harvard T.H. Chan School of Public Health urgently gathered for what they dubbed a "data preservation marathon." Their mission? To download and archive health equity data from government websites before it could disappear entirely. Jonathan Gilmour, data scientist at Harvard Chan, expressed the gravity of the situation: "It’s dire. It's not known if these changes are permanent or if the websites will once again become available. Many researchers fear more trusted health databases might vanish in the coming hours and days," he said.
Key resources impacted included the CDC’s Youth Risk Behavior Survey, which tracks students' health behaviors, and comprehensive data about HIV removed from the CDC's website. The group's fears were compounded by Trump's executive order on his first day, mandatorily directing agencies to review and eliminate diversity, equity, and inclusion (DEI) content from their online platforms.
On both public health and scientific fronts, researchers and public health experts sounded the alarm, emphasizing the potential risks of significant data loss. According to Gilmour, "It's really important to understand we can’t have a full picture of what’s going on if we stop making data available. Without access to this data, we’re losing our grip on public health insights and trends. It imperils our way of life.”
Among the health resources affected was the Morbidity and Mortality Weekly Report, the CDC's official journal, which failed to publish as scheduled for the first time in its history. One report expected to appear discussed bird flu risks for veterinarians. This pause in communication across federal health agencies has drawn additional scrutiny amid concerns about data transparency and the public's right to access information about health threats.
Efforts by researchers to preserve these resources included using web scraping tools and the Wayback Machine, maintained by the Internet Archive to archive web content. The challenge of documenting the disappearing data was immense. "There’s no way of knowing how much has disappeared so far," Gilmour stated, highlighting the swift changes desperate to be documented. Despite their diligence, researchers found themselves racing against time as websites vanished faster than content could be preserved.
By the end of Friday, significant portions of the CDC's webpages were down, including those focusing on HIV resources for clinicians and detailed information on contraception. The national surveys providing data on children’s health—known as the Youth Risk Behavioral Surveillance System (YRBS)—were also reported as inaccessible. Frontline health organizations began warning local members to download any significant data they could before it went dark.
"We do not know how long it will be down or what will be impacted," stated one health official from North Carolina, indicating widespread concern among local health care workers.
The Institute of Medicine and Infectious Diseases Society of America issued statements underscoring the urgent need for the government’s health information resources, emphasizing their role in combating existing and potential public health epidemics. They expressed great concern over the removal of scientific data, particularly information related to HIV and other health disparities among marginalized communities.
Historically, data removal has not been uncommon during transitions between administrations. For example, the Trump administration previously deleted references to climate change soon after inauguration, sparking increased scrutiny over transparency and scientific reportings. This latest wave of deletions, critics argue, seems to aim at removing any semblance of acknowledgment for health disparities and issues faced by marginalized groups, particularly LGBTQ+ individuals.
Despite the anticipated returns of some information, such as the CDC’s HIV data, many fear permanent loss is imminent. A federal website dedicated to reproductive rights was rendered inaccessible, with many criticizing the administration’s decision as damaging and counterproductive to public health interests.
Local health officials across the country rallied together, protesting the changes and demanding access to the databases their work depends on. A letter from the Association of Health Care Journalists condemned the information purges, stressing, "Erasing HIV/AIDS content from government websites helps literally no one. It endangers public health and abandons those who rely on these resources." Representative Mark Pocan, Chair of the HIV/AIDS Caucus, reiterated this sentiment, asserting, "What Trump is trying to hide is concerning. Today, significant public health resources, including data on LGBTQIA health, have been erased and censored. What else is he planning to erase?"
Moving forward, the situation remains fluid, with many experts advocating for the need to track these changes closely. Without federal data on these public health issues, researchers and healthcare providers alike grapple with the uncertainty of their work’s accuracy and reliability.
The Trump administration's actions reflect broader tensions surrounding access to government information, and the ramifications of these changes are yet to be fully realized. Observers are left questioning the long-term impacts on public health policy, scientific research, and community health overall.
For the immediate future, concerned individuals and groups have mobilized to advocate for policies ensuring the preservation of health information, urging the administration to reconsider and restore access to these invaluable resources.