Originally published by our sister publication Pharmacy Practice News This story was updated on Feb.1 at 3 p.m.
By Gina Shaw
Infectious disease experts expressed alarm and outrage after resources related to HIV were purged from the Centers for Disease Control and Prevention’s (CDC) web site on Friday, Jan. 31, in the aftermath of a Trump administration order that requires federal agencies to eliminate all references to “gender ideology.”
Although a main landing page on HIV remained active as of Friday evening, most if not all related sub-pages were not functional, including clinical guidance for the use of pre-exposure prophylaxis (PReP) and all links to HIV data. PReP is instramental in achieving the goal of eliminating HIV in this country, a program started by Mr. Trump during his last term.
Clicking on the links yields the message,"the page you're looking for was not found.”
IDSA and HIVMA: Information Gaps ‘Dangerous’
In a statement issued Friday afternoon, leaders of the Infectious Disease Society of America (IDSA) and the HIV Medicine Association (HIVMA) said the action creates “dangerous gaps” in scientific information. “The removal of HIV- and LGBTQ-related resources from the websites of the Centers for Disease Control and Prevention and other health agencies is deeply concerning and creates a dangerous gap in scientific information and data to monitor and respond to disease outbreaks,” said the statement, attributed to IDSA President Tina Tan, MD, FIDSA, FPIDS, FAAP, and HIVMA Chair Colleen Kelley, MD, MPH, FIDSA.
“Access to this information is crucial for infectious diseases and HIV health care professionals who care for people with HIV and members of the LGBTQ community and is critical to efforts to end the HIV epidemic,” the statement noted. “This is especially important as diseases such as HIV, Mpox, sexually transmitted infections and other illnesses threaten public health and impact the entire population.”
Many healthcare providers look to the CDC for the latest information and research. “Timely and accurate information from the CDC guides clinical practice and policies, which are essential for controlling infections and safeguarding health,” they added.
"This is horrible news and will greatly impact how people view HIV,” said Anthony Gerber, PharmD, AAHIVP, a collaborative drug therapy management clinical pharmacist in virology and sexual health at Bellevue Hospital, in New York. “HIV has always had a stigma as a gay man’s disease, and information from the CDC or other government agencies have helped [underscore] that not only gay men get HIV.”
The deleted information resources also convey that HIV “is a worldwide epidemic that effects all people, regardless of gender or sexual orientation,” Dr. Gerber said. “By removing public resources to educate the public, we are going against the mission statement President Trump put out in his first term in office to decrease new HIV infections by 90% by 2030.
“This is truly awful and it is unfortunate that it is occurring.”
Saskia Popescu, PhD, MA, MPH, an assistant professor of epidemiology and public health at the University of Maryland, agreed that the HIV information purge is “deeply concerning, particularly the fact that the HIV data page is gone. I’m hoping this will be rectified, but with so many changes to critical health pages and data, I’m worried not only for the impact to public health response, but what this says for the larger health strategy under the Trump Administration.”
Dr. Popescu noted that it’s impossible to know what the CDC site will look like when and if these resources are restored. “Will the data be made accessible again? If so, what data will be included and what will have been removed?” she asked. “There are very real concerns that any data around gender and LGBTQIA stratification will be removed. These kinds of changes are deeply worrisome and are only going to hurt HIV response and prevention efforts.”
After the Jan. 29 release of a memo from acting director of the Office of Personnel Management (OPM) Charles Ezell, titled “Initial Guidance Regarding President Trump’s Executive Order Defending Women,” a number individual researchers and public health groups began downloading data from the CDC and other government web sites, out of concern that just such a “scrubbing” might take place. “There were a lot of archiving efforts, but this is an enormous amount of data,” Dr. Popescu said.
With the United States and the world facing a large number of health threats, including H5N1, Mpox, Marburg, Ebola, and surging cases of influenza, norovirus and COVID-19, a trustworthy and reliable public health response is more important than ever, Dr. Popescu said. “Data is a critical part of response and prevention. To limit data to remove it not only undermines public trust, it also threatens public health and is deeply concerning.
“Americans deserve transparency and access to all public health data, not whatever fits a political agenda,” Dr. Popescu said.
Opposed to 'Politicization of Public Health’
Censoring scientific data will likely cause huge setbacks in the progress the scientific community has made in ending the HIV epidemic, promoting health equity, and achieving advancements in HIV treatment and prevention, warned Melissa Badowski, PharmD, MPH, BCIDP, AAHIVP, a clinical professor of pharmacy at the University of Illinois at Chicago, Retzky College of Pharmacy.
“This will further marginalize communities already affected disproportionately with HIV based on the inability to track vital epidemiologic statistics and advancing research of current and pipeline treatment and prevention modalities,” she said.
“Removing educational resources for the medical, advocate and patient communities may promote HIV transmission. Thanks to various interventions between 2018 (n=36,200) and 2022 (31,800) there was a 12% decline in the incidence of HIV. If and when these vital resources return, they may be heavily censored or may further stigmatize or discriminate against those afflicted with HIV. Only time will tell, but one thing we can expect is the modification of any language surrounding ‘gender ideology’,” Dr. Badowski said.
Onyema Ogbuagu, MBBCh, FACP, FIDSA, an associate professor of medicine (AIDS) and pharmacology at Yale School of Medicine, in New Haven, Conn., also found the move disconcerting. “The politicization of public health agencies and their guidance to the public is exceedingly unnerving,” he said. “Fragile gains in addressing contemporary and emerging health threats to the public that are sustained by independent, sufficiently resourced and robust public health agencies led by science and truth are in serious jeopardy. I worry about the immediate and longer term impact and implications of these events.”
Dr. Ogbuagu added that he “would hate for resurgent diseases, some harms of which may be irreversible, to be the eye-opener for the American public.”
Dr. Badowski warned of the potential for disruption of patient care as a result of the removal of the CDC resources, as well as further promotion of stigma for those disproportionately affected by HIV. “By limiting or halting research activities and access to these life-saving medications, we are losing our fight in ending the HIV epidemic for good, especially in racial and ethnic minority populations and gay, bisexual, and men who have sex with men,” she said. “For more than 40 years, there have been ongoing advances in the field of HIV thanks to federal funding of research and patient support services. By imposing this mandate, it could hinder patient care and research by preventing inclusive research. The progress in addressing and minimizing health disparities could unravel, especially in the most marginalized groups."
One possible remaining source for at least some of that data is the Internet Archive Wayback Machine, using the direct URL. A toolbar at the top of the site can be used to navigate back to a recently archived version of the CDC’s page, to access resources as they appeared prior to Jan. 31. (It is unclear whether all of the missing information is accessible there.)
“For more than 40 years, there have been ongoing advances in the field of HIV thanks to federal funding of research and patient support services. By imposing this mandate, it could hinder patient care and research by preventing inclusive research. The progress in addressing and minimizing health disparities could unravel, especially in the most marginalized groups," Dr. Badowski said.
