Sunday, February 02, 2025

CDC's Advisers Demand Agency Provide Answers On Removal Of 'Critical' Health Data

They want an explanation for why the agency took down information used for planning disaster relief, studying medical outcomes and helping at-risk populations.


By Jonathan Cohn
Feb 2, 2025, 01:10 PM EST

Nearly every member of an official advisory committee to the U.S. Centers for Disease Control and Prevention has signed an open letter demanding the agency explain why it removed troves of vital health datasets from its website.

The removal of the datasets took place on Friday, as part of a governmentwide effort to comply with Trump administration orders prohibiting public communication related to diversity, equity and inclusion, or DEI, with an emphasis on anything tied to gender and sexuality.

At the CDC, that has led to the removal of public datasets like the Youth Risk Factor Behavioral Surveillance System, which ― as the official CDC website formerly stated ― is “used by health departments, educators, lawmakers, doctors, and community organizations to inform school and community programs, communications campaigns, and other efforts.”

Also gone from the CDC website is information about the Social Vulnerability Index, which officials use for disaster management planning, as well as AtlasPlus, where data on HIV, viral hepatitis, sexually transmitted diseases and tuberculosis could be accessed.

All of that is in addition to the removal of other health information, like web pages for the public about PrEP, the antiviral medication to prevent HIV transmission.

The removal of health information has provoked outrage from health researchers and officials across the country, among them members of the Advisory Committee to the CDC Director, which Congress created through federal law.

The committee has no power, and, as STAT News noted, the CDC director for Trump’s first administration actually disbanded the group in 2019 before the Biden administration’s replacement reconvened it in 2021.

But the group’s members have a public voice. On Saturday, 10 of them decided to use it by writing an open letter to the current acting director, Susan Monarez.

The letter demanded that Monarez provide written answers to questions about the rationale, legality and possible public health consequences of taking down the information. It also called on her to convene a meeting of the advisory group to discuss the matter.

“Datasets that are no longer accessible include critical sources of information about diseases, populations, and risk factors, including tools that allow people all across the country to understand the health of their communities,” the letter writers said.

They noted that the CDC itself has said that a core purpose of the agency is to “assess and monitor population health status, factors that influence health, and community needs and assets.”

“This is consistent with our job, we’re trying to advise the acting director like we’ve been asked to do by Congress,” Joshua Sharfstein, a letter signer who is a pediatrician and a professor at the Johns Hopkins School of Public Health, told HuffPost.

As with the purge of information in other parts of the federal government, like the Census Bureau and National Institutes of Health, it’s not clear to what extent officials at the White House or other parts of the administration were demanding these changes specifically ― or to what extent it is officials at the CDC making decisions based on their own agendas or interpretations of the orders.

Administration officials have generally not been responding to media inquiries except with short statements, like one HuffPost got on Friday from an official at the Department of Health and Human Services (which oversees the CDC) who said that changes to department websites were being “made in accordance” with Trump orders.

A banner that was appearing on some CDC web pages on Sunday said the same thing.

Whatever the precise explanation for who ordered what, it’s not difficult to imagine why some of these datasets would have run afoul of Trump administration sensibilities on DEI, gender and sexuality.

The Social Vulnerability Index, for example, includes among its statistical inputs information about minority status and language abilities.

But the purpose of the index is to help make sure disaster relief gets to communities where people might have a hard time understanding English (which has been an issue following hurricanes in Florida) or be suspicious of public health efforts (which was a challenge during COVID-19 vaccination campaigns).

And the communities that benefit from this information frequently include those that President Donald Trump and his allies have said they intend to champion.

As the letter writers note, other web pages like AtlasPlus help officials direct “federal resources to rural U.S. counties with high rates of Hepatitis C among people who inject drugs, contributing to efforts to combat the national opioid crisis.” (The opioid epidemic has hit Republican-leaning districts in the South, Midwest and Appalachia particularly hard.)

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“These datasets are more than statistics; they’re our early warning system, our map to community well-being,” Nirav Shah, one of the signers, told HuffPost over email.

Shah, who is an adjunct professor of primary care and population health at Stanford University, went on to say, “By removing them, we’re not just hiding numbers — we’re dimming the lights on our ability to protect and preserve the health of all Americans.”

CDC site scrubs HIV content following Trump DEI policies



Berkeley Lovelace Jr.
Updated Sat, February 1, 2025 

The Centers for Disease Control and Prevention on Friday is scrubbing a swath of HIV-related content from the agency’s website as a part of President Donald Trump’s broader effort to wipe out diversity, equity and inclusion initiatives across the federal government.

The CDC’s main HIV page was down temporarily but has been restored. The CDC began removing all content related to gender identity on Friday, according to one government staffer. HIV-related pages were apparently caught up in that action.

CDC employees were told in a Jan 29. email from Charles Ezell, the acting director of the U.S. office of personnel management, titled “Defending Women,” that they’re not to make references or promote “gender ideology” — a term often used by conservative groups to describe what they consider “woke” views on sex and gender — and that they are to recognize only two sexes, male and female, according to a memo obtained by NBC News.

Employees initially struggled with how to implement the new policy, with a deadline of Friday afternoon, the staffer said. Ultimately, agency staffers began pulling down numerous HIV-related webpages — regardless of whether it included gender — rushing to meet the deadline. It was unclear when the pages might be restored.

“The process is underway,” said the government agency staffer, who requested anonymity for fear of repercussions. “There’s just so much gender content in HIV that we have to take everything down in order to meet the deadline.”

The White House did not immediately respond to requests for comment. Communications representatives within the CDC’s HIV and STD prevention departments did not return requests for comment; last week, the Trump administration ordered all employees of HHS, which includes the CDC, to stop communicating with external parties.

Trump’s sweeping executive order to wipe out DEI programs across the federal government threatens to upend the CDC’s efforts to combat HIV among Black, Latino and transgender people — groups disproportionately affected by the virus — according to public health experts.

The executive order, signed by Trump last week, proclaims that the U.S. government will recognize only two sexes — male and female — and end what it characterizes as “radical and wasteful” DEI spending. It also requires that the government use the term “sex” instead of “gender.”

These sweeping directives from the Trump administration, health experts say, threaten to dismantle the CDC’s HIV prevention division, as addressing disparities based on race, sex or gender identity is fundamental to HIV prevention work. The virus has long disproportionately impacted various minority groups, including Blacks and Latinos, gay and bisexual men and transgender people.

A page addressing workplace diversity at the CDC’s National Center for HIV, Viral Hepatitis, STD and Tuberculosis Prevention, of which the HIV department is a division, for example, has been taken down.

By early Friday afternoon, in addition to the main HIV page, a hub for HIV data, resources for health care providers, pages on racial disparities, another on transgender people, gay and bisexual men, information about ongoing youth risk behaviors and details about the federal “Ending the HIV Epidemic” plan — which Trump endorsed in his 2019 State of the Union address — were also removed, along with HIV pages on deaths and diagnoses in the U.S.

Separately, a website that provides technical assistance and training resources to agencies and clinics that receive funding from the Ryan White HIV/AIDS Program, which is run by HHS and provides safety-net funding for the care and treatment of low-income people with HIV, has also been pulled down this week, replaced by a note that says it is “under maintenance.”

An archived version of the site indicates it was active as recently as Jan. 24 and rendered inactive by Jan. 29.

“How can we work on preventing HIV among the populations who are most at risk for it if we can’t talk about it?” said the government worker. “This essentially shuts our entire agency down. We are scrambling to figure out what to do.”

Since Trump’s inauguration, an NBC News analysis found, the administration has scrubbed dozens of webpages that mention diversity, equity, inclusion, gender or sexuality from the sites of federal health agencies like the National Institutes of Health, Food and Drug Administration, CDC and Department of Human and Health Services.

Reproductiverights.gov, the HHS website that provided information about access to reproductive care, including abortion, in the U.S. is among the sites that are now offline. The FDA’s Office of Minority Health and Health Equity website has also been purged, and the NIH’s Office of Equity, Diversity and Inclusion website now redirects to a page on equal employment opportunity.

The formation of the CDC’s HIV prevention division dates back to the early 1980s, as the agency responded to the emerging AIDS epidemic.

The agency is responsible for tracking HIV infections across the U.S., conducting research — in some cases with outside groups — that inform HIV transmission efforts, and also launching initiatives to promote testing and prevention, such as the use of the HIV prevention pill, known as PrEP.

Prioritizing local control of HIV prevention efforts, the CDC provides millions of dollars of grants to state and local health departments and nonprofits to conduct much of the on-the-ground efforts to surveil and combat the virus.

The bulk of federal spending on HIV research, including on experimental vaccines, treatments and cure therapies, comes from the NIH. It remains unclear whether such funding is at risk as the Trump administration exerts its influence across the nation’s health agencies.

But Trump’s pick to lead HHS, Robert F. Kennedy Jr., has said he wants to impose an eight-year “break” on infectious disease research to prioritize studying chronic health conditions, such as obesity and diabetes.

While HIV is an infectious disease, it is also considered a chronic health condition, thanks to effective antiretroviral treatment that has extended the life expectancy of people on such medication to near normal. People with the virus are at higher risk of various other chronic health conditions associated with aging, including cardiovascular disease and diabetes. The NIH has devoted considerable resources to seeking means to mitigate these intersecting health risks.

The annual HIV transmission rate peaked in the mid-1980s at an estimated 135,000 cases per year and plateaued at about 50,000 cases during the 1990s and 2000s, according to the CDC. In recent years, as PrEP has become more popular, HIV has declined modestly, including a 12% drop between 2018 and 2022, to an estimated 31,800 new cases. But such progress pales in comparison to the steep recent declines seen in many other wealthy Western nations.

In 2022, the most recent year for which granular data are available, Blacks and Latinos accounted for 37% and 33% of new HIV cases, despite being just 12% and 18% of the U.S. population.

About two-thirds of new cases occur among gay and bisexual men, who are just 2% of the adult population. While research indicates that transgender women in particular have a high HIV rate, the CDC’s routine HIV surveillance reports do not break down the data according to gender identity.

HIV advocates expressed concern that the Trump administration’s anti-DEI efforts would hamstring the CDC’s efforts to combat HIV and jeopardize hard-fought gains.

“An HIV prevention policy that does not tailor outreach, programs, and services to the communities most in need could increase stigma, make outreach and engagements more challenging, and affect trust,” Lindsey Dawson, an associate director at KFF, a nonprofit group focused on health policy, wrote in an email.

Politics have collided with HIV prevention and advocacy since the dawning of the epidemic.

During the 1980s, activists excoriated President Ronald Reagan for his administration’s slow response to the burgeoning AIDS crisis that was decimating the gay community.

In 1987, Congress passed the Helms Amendment, derisively known as the “No Promo Homo” bill, which prohibited the CDC from creating HIV educational materials or developing programs that would “promote or encourage, and condone homosexual activities.”

Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, said that during George W. Bush’s presidency, researchers and organizations writing applications for federal grant funding for HIV-related matters had to avoid making any reference to gay people or condoms.

The iron-fisted impact of Trump’s anti-DEI order, however, appears to be a league unto itself, HIV prevention experts said.

“Many programs that support disadvantaged groups in the United States are in the crosshairs of the administration,” said Dr. Jeffrey Klausner, an infectious disease expert at the University of Southern California and a veteran of the fight against HIV. “I am very worried about HIV prevention in the United States. We have had tremendous success in the United States brought about by career, highly dedicated NIH and CDC scientists who then transferred their discoveries to the private sector for sales and implementation.”

The government employee called Trump’s order “demoralizing.”


CDC deletes info on HIV, LGBTQ care from website to comply with Trump’s attack on diversity

Clarissa-Jan Lim
Sat, February 1, 2025

Public health information related to LGBTQ care and to HIV was scrubbed from the Centers for Disease Control and Prevention’s website Friday as the agency seeks to comply with President Donald Trump’s sweeping executive orders.

The CDC’s main HIV page was still accessible as of Saturday afternoon, although a disclaimer at the top states that the agency’s website “is being modified to comply with President Trump’s Executive Orders.” Pages that previously contained HIV data — including resources for health care providers, information on racial disparities and data on transgender people, gay and bisexual men — have been removed and remain unavailable as of this writing.

The agency also took down its pages on LGBTQ care, including those containing data about suicide rates among LGBTQ youth. A page with information on food safety for pregnant people was also removed.

CDC employees were informed in a memo this week that they are barred from promoting “gender ideology” and to begin removing all public-facing media that might “inculcate or promote” such concepts by Friday afternoon. The term “gender ideology” is one that the advocacy organization GLAAD calls “a malicious rhetorical construct that falsely asserts that LGBTQ — notably trans — people are an ideological movement rather than an intrinsic identity.”

One government staffer told NBC News that CDC officials struggled with implementing the policy and “began pulling down numerous HIV-related webpages — regardless of whether it included gender — rushing to meet the deadline.”

It’s unclear whether the CDC might restore the webpages at a later date, and if so, how the information might be presented differently.

In his first week in office, Trump signed executive orders, essentially, to prohibit the government from recognizing transgender people and to eliminate diversity, equity and inclusion policies in federal agencies. The Defense Intelligence Agency, which is part of the Pentagon, announced on Friday that all activities and events related to “special observances,” such as Black History Month, Asian American Pacific Islander Heritage Month, National American Indian Heritage Month and Holocaust Remembrance Day, will be halted to comply with Trump’s anti-diversity order.

When asked by a reporter on Friday about government websites being scrubbed of information even tangentially related to race or gender, Trump pleaded ignorance but said it “doesn’t sound like a bad idea to me.”

“DEI would’ve ruined our country and now it’s dead ... So if they want to scrub the websites, that’s OK with me.” Trump said, adding that the “real leaders” in the military are “very happy about it.”

This article was originally published on MSNBC.com




Trump's anti-transgender executive orders force CDC to remove HIV resources

Ryan Adamczeski
Fri, January 31, 2025 

act up protest

The Centers for Disease Control and Prevention is removing content related to HIV after Donald Trump issued executive orders targeting the transgender community.

The order prohibiting federal agencies from making any mention of "gender ideology" has given staffers little time to implement changes with its deadline of Friday afternoon, resulting in the agency taking down HIV-related pages regardless of if they mentioned gender or not.

Charles Ezell, the acting director of the U.S. office of personnel management titled “Defending Women,” sent an email to CDC employees Tuesday, obtained by NBC News, that directly ordered them not to make any references to “gender ideology” and to only recognize two sexes, male and female, against medical fact.

“The process is underway,” an anonymous agency staffer told the outlet. “There’s just so much gender content in HIV that we have to take everything down in order to meet the deadline.”

Trump's so-called "Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government" order defines sex as strictly male or female based on a person's assigned sex at birth. This is in opposition to all major medical associations in the United States, which maintain that sex is not binary and that transgender and nonbinary identities are real.

The Trump Administration last week removed references to LGBTQ+ identities and HIV-related resources from government sites such as WhiteHouse.gov, the Department of State, and Department of Labor. The removed content included the White House’s equity report, information on HIV prevention and treatment, and Pride Month acknowledgments. The Department of Labor’s LGBTQ+ workers’ rights page and the State Department’s LGBTQ+ rights page were also taken down.

“President Trump claims to be a strong proponent of freedom of speech, yet he is clearly committed to censorship of any information containing or related to LGBTQ Americans and issues that we face,” GLAAD president and CEO Sarah Kate Ellis said in a statement. “Sadly for him, our community is more visible than ever; and this pathetic attempt to diminish and remove us will again prove unsuccessful."

US health agencies scrub HIV, other data to remove 'gender ideology'

REUTERS
Updated Fri, January 31, 2025 





By Julie Steenhuysen and Ted Hesson

(Reuters) - The U.S. Centers for Disease Control and Prevention and other federal health agencies on Friday took down webpages with information on HIV statistics and other data to comply with Trump administration orders on gender identity and diversity, raising concerns among physicians and patient advocates.

CDC webpages that appear to have been removed include statistics on HIV among transgender people and data on health disparities among gay, lesbian, bisexual and transgender youth. A database tracking behaviors that increase health risks for youth was offline.

Earlier this month, President Donald Trump ordered the federal government to solely recognize male and female sex and eliminate diversity, equity and inclusion programs.

The Office of Personnel Management gave agencies more specific guidance on how to comply with the orders in a Jan. 29 memo, saying they were to be completed by 5 p.m. ET (2200 GMT) on Jan. 31.

It specified that agencies must end all programs that promote or reflect "gender ideology extremism" by recognizing a self-determined gender identity rather than biological sex. The measures include removing references to gender identity online.

A spokesperson for the Health and Human Services Department, which oversees the CDC, said any changes to websites follow this guidance.

"There's a lot of work going on at the agency to comply," said a source who was not authorized to speak publicly, adding that the CDC is "taking down anything on the website that doesn't support this executive order."

Deletions from the CDC's site include pages with data on HIV in the United States in general, as well as pages with statistics on HIV in Hispanic/Latino people, women, by age, and by race and ethnicity.

The elimination of such data "creates a dangerous gap in scientific information and data to monitor and respond to disease outbreaks," the Infectious Diseases Society of America and the HIV Medicine Association said in a joint statement.

For example, a page with information about how people can get HIV tests was offline on Friday, according to the Internet Archive, as was a page for doctors with information about testing for HIV and treating patients.

"This is very alarming," said John Peller, head of the AIDS Foundation Chicago. "In many cases, basic health information is going dark."

Timothy Jackson, senior director of policy and advocacy at the group, said they are going through the CDC website and printing out information used to educate people about HIV that may not be accessible after Friday.

Also missing from the CDC's website was the Youth Risk Behavior Surveillance System, which tracks trends in tobacco use, teen pregnancy, unsafe sexual behavior and other aspects of teen health.

At the National Institutes of Health, a senior employee this week urged agency leaders to refuse to implement the Trump administration's guidance in an email to acting NIH Director Matthew Memoli and other top officials that was seen by Reuters.

The employee, Nate Brought, director of the NIH executive office, said Trump's orders ran contrary to years of NIH research and findings about sexuality and gender.

"By complying with these orders, we will be denigrating the contributions made to the NIH mission by trans and intersex members of our staff, and the contributions of trans and intersex citizens to our society," he wrote.

"These policies will lead to mental health crises or worse for tens of thousands of Americans who contribute productively to our communities."

(Reporting by Julie Steenhuysen in Chicago and Ted Hesson in Washington; Additional reporting by Jaimi Dowdell in Los Angeles and Brad Heath in Washington; Editing by Leslie Adler and Bill Berkrot)


Multiple health agency websites on HIV, contraception taken down to comply with executive orders

SELINA WANG, STEVEN PORTNOY, CHEYENNE HASLETT, DR. JOHN BROWNSTEIN and YOURI BENADJAOUD

Sat, February 1, 2025 

Government agency webpages about HIV, LGBTQ+ people and multiple other public health topics were down as of Friday evening due to President Donald Trump's executive orders aimed at gender ideology and diversity, equity and inclusion.

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.

Entire databases have also been temporarily removed.

MORE: A look at changes at US health agencies in the 1st week of the new Trump administration

Researchers confirmed to ABC News they were scrambling to collect and archive as much data as possible from the sites before they were taken down.

Some pages might be returned to public view after the language is reviewed and removed, officials at the Department of Health and Human Services and the CDC said, though it's not clear which pages.

Removed pages included key CDC information on the rate of HIV diagnoses, breakdowns of infections by race and gender and the probability of HIV transmission by various forms of sex.

MORE: A look at what DEI means amid Trump executive orders

The Youth Risk Behavior Surveillance System, a national survey system that collects various habits on teenagers as well as their gender identity, is also down.

The CDC's "HIV Risk Reduction Tool," an interactive tool that allowed users to gauge the risk of certain sexual behaviors, has also been erased.

For now, the agency appears to have consolidated all of its information about the virus that causes AIDS into a single, simplified page titled, "About HIV."

Another website, reproductiverights.gov, which provided resources on reproductive care and abortion access, was also removed. The Food and Drug Administration's webpage titled "Minority Health and Health Equity" was also down.

Asked Friday afternoon in the Oval Office if government websites would be shut down to be scrubbed, the president said it wouldn't be a "bad idea."

"I don't know -- it doesn't sound like a bad idea to me," Trump said.

PHOTO: President Donald Trump answers a question after signing an executive order in the Oval Office at the White House in Washington, Jan. 31, 2025. (Evan Vucci/AP)

MORE: How the Trump administration is working to 'combat' DEI in the private sector

"DEI ... would have ruined our country, and now it's dead. I think DEI is dead. So, if they want to scrub the website, that's OK with me. But I can't tell you," Trump continued. Trump's executive order on DEI called for an "end" to any related policies within the federal government

The other executive order, "Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government," directed the federal government to recognize only two sexes: male and female.

A memo sent to HHS officials on Wednesday directed subagencies such as the CDC to remove "all outward facing media (websites, social media accounts, etc.) that inculcate or promote gender ideology" by 5 p.m. on Friday.

abcnews.go.com

Federal websites told to purge content related to gender, climate
NEWSNATION
Steph Whiteside
Fri, January 31, 2025 

(NewsNation) — Portions of federal government websites have gone dark as agencies are being told to “pause” them to remove content that doesn’t comply with President Donald Trump’s views.

The U.S. Department of Agriculture was told to delete pages about climate change, according to an email from the agency’s communications department.

The Centers for Disease Control and Prevention’s pages on HIV also went dark earlier in the day, but some content was later restored. Other health information and statistics used by clinicians and public health officials appeared to be removed.

The entire census.gov website also appeared to be down Friday evening.


Officials from health departments and nonprofits who receive federal funds also say they’ve been told to get rid of mentions of gender and equity from their programs to comply with an executive order issued earlier this week.

It’s not clear how organizations will be able to comply with the instructions and what will happen to information about health programs specifically designed to address equity gaps or issues specifically affecting transgender people.

An order banning pronouns in email signatures, initially only thought to extend to federal staff, may also reportedly be extended to groups getting federal grants.

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