Following a Jan. 29 memo, staff at the CDC are removing any content related to “gender ideology,” with a deadline of Friday afternoon, according to an NBC News report.
The entire website was briefly unavailable, and journalists are reporting that several datasets may be affected by the sweeping changes. The agency’s HIV content was entirely offline briefly on Friday, though parts of it have since been restored. Some data, such as the Youth Risk Behavior Surveillance System and the CDC’s Social Vulnerability Index were unavailable on Friday afternoon. Datasets related to racial disparities, LGBTQIA+ health and reproductive health were at risk, as were data on racial and ethnic health disparities, climate and environmental justice. Websites such as the NIH’s Office of Research on Women’s Health were also unavailable Friday. This is an emerging topic and what data will eventually remain publicly available remains unclear.
The U.S.’s granular, rich data on racial and ethnic differences in health outcomes is unique among many nations — several European countries do not gather this information, and thus lack information on health disparities and the impact of social determinants of health.
Journalists covering issues of health disparities and health equity should consider backing up data from federal agencies including the NIH and CDC. “It may be a good idea to download data from CMS as a backup, too, especially nursing homes, staffing, and ownership, as well as the latest data on Medicare and Medicaid enrollment, since much of this information can be parsed out by race, income, and other social determinants of health,” said AHCJ Health Beat Leader for Aging Liz Seegert.
Even basic data like the CDC’s National Center for Health Statistics Vital Statistics files are inaccessible. Attempts to access several files on mortality causes resulted in an error message, warning that the files did not appear to be valid. Others within AHCJ who also tried to access this data saw the same message.
“While it may seem as if some datasets are still accessible on an agency’s website, the information they contain may have been erased or corrupted,” Seegert said.
“These data are used by journalists every day to report stories about public health,” AHCJ President Felice Freyer wrote in a letter to the heads of the CDC and HHS. “At a time when the rise in chronic illnesses and harmful behaviors among young people is at the top of the national agenda, the [Youth Risk Behavior Surveillance] data on smoking, vaping, drinking, eating, exercise, and sexual behavior are crucial for reporters trying to inform the public about these issues.”
Quick actions
- Download data you’re likely going to need for ongoing stories or projects and store them securely.
- Nominate websites to the End of Term Web Archive.
- Volunteer to work with data preservation and data retrieval efforts.
- Keep the AHCJ Right to Know committee informed whenever data becomes inaccessible or disappears.
- Share data you may have and alternative resources to access datasets with other journalists and scientists.
More reading
- HIV, transgender care, climate change and other federal websites go dark — Axios.
- CDC Purging Its Website After Trump Orders — MedPage Today.
- CDC removal of databases on sexual orientation, gender identity sparks alarm — STAT.
- A Look at Federal Health Data Taken Offline — KFF.
- Trump health health info blackout shocks providers — Axios.
- Trump administration’s data deletions set off ‘a mad scramble,’ researcher says — The Washington Post.
- Breaking: Trump is Scrubbing HIPAA Info off HHS Website — Abortion, Every Day with Jessica Valenti (Substack).
