Federal datasets began disappearing from public view on Jan 31, in response to executive orders from President Donald Trump. Among those were the Centers for Disease Control and Prevention’s Youth Risk Behavior Survey, which asks respondents about their gender identity and sexual orientation and tracks behaviors like smoking and drug use; CDC’s HIV dataset; and CDC and Agency for Toxic Substances and Disease registry’s Environmental Justice Index, which tracks pollution in communities, and Social Vulnerability Index, which identifies communities at high risk for disease and disability.
The collection of public health surveillance data has never been politically neutral. It has always reflected ideas about individual rights. With our colleagues James Colgrove and Daniel Wolfe, we have written about the history and ethics of surveillance. Despite controversy, it remains public health’s foundational tool.
Surveillance typically involves tracking individuals with diseases by name for the purpose of direct action, including isolation, quarantine and treatment. It allows health officials to identify environmental threats and evaluate treatments. It allows governments to direct prevention and treatment resources where they are needed most, be that to a region or a group at highest risk. By the early 20th century, public health officials argued that without surveillance, they worked “in the darkness of ignorance” and “might as well hunt birds by shooting into every green bush.”
Three major controversies in the history of public health underscore what is at stake with the collection and maintenance of this information.
Tuberculosis – doctors resist sharing names
The collection of tuberculosis data provided the basic blueprint for public health surveillance.
Debates over tuberculosis reporting began in the late 19th century, when the bacterial infection was reframed not as a disease of the elite but of the urban poor. New York City was the first in the country to require that physicians report the names of TB patients in an effort to address the leading cause of death in both the city and the U.S.
The medical community bitterly resisted tuberculosis surveillance. A prominent New York City surgeon argued that surveillance represented a “dictatorial … encroachment” of the health department that threatened to rob physicians of their patients.
But most people were not under the care of a private physician, and tuberculosis surveillance was a way to ensure that the largely immigrant poor living in the tenement districts got referrals to clinics, nourishment and, if necessary, isolation. Despite physicians’ attempts to kill these efforts, there was no public outcry about tracking “the great white plague” despite extensive, sensational coverage of the controversy in the popular press.
HIV/AIDS – resistant patients at the forefront
Debates around TB surveillance unfolded during a period in which both public health and medicine were highly paternalistic and authoritarian: Health department physicians or private physicians made medical decisions, not patients.
That changed with the AIDS epidemic, the first major infectious disease threat in more than a generation. AIDS arrived as American politics took a sharp conservative turn with the election of President Ronald Reagan. When in 1985 it became possible to test for HIV, the virus that causes AIDS, the prospect of named surveillance triggered deep fears about stigma and discrimination.
The prospect of reporting the names of those with HIV prompted one gay activist to declare, “First comes the national registry, then come the boxcars, then come the camps for people with AIDS.” Gay rights advocates, who prioritized privacy, rejected HIV surveillance as a threat.
An alliance of gay rights leaders and civil liberties advocates was initially able to prevent health departments from undertaking named HIV surveillance. But by the end of the 1980s, there was growing pressure to return HIV/AIDS to “the medical mainstream,” meaning that it could be managed therapeutically like other chronic conditions. As effective treatment became available in the 1990s, opposition faded, and all 50 states required named reporting.
Cancer – patients demand to be counted
If TB and HIV/AIDS reporting began as histories of resistance, the story was very different when it came to cancer reporting, which lagged far behind infectious disease surveillance.
In the wake of the environmental and women’s movements, citizen activists, mothers of children with birth defects and women with breast cancer became alarmed about the threat of cancer linked to pesticides or industrial pollutants. Women with cancer asserted a “right to be counted.” Although the National Cancer Act of 1971 directed the National Cancer Institute to “collect, analyze, and disseminate all data useful in the prevention, diagnosis, and treatment of cancer,” by the 1980s, 10 states still had no registry.
Vermont’s Bernie Sanders, then an independent member of the U.S. House of Representatives, called for a federally funded program to collect data on cancer in every state. Speaking in support of his bill in 1992, Sanders repeatedly invoked communities’ right to know: “We need to know the age of people who are coming down with cancer. We need to know where they live. We need to know the kind of work they do. We need their racial and ethnic backgrounds.”
President George H.W. Bush signed the Cancer Registries Amendment Act, which mandated cancer surveillance, into law in 1992. But it was not until 2000 that all states established cancer registries.
Surveillance is foundational for public health
In the broader history of surveillance, two key lessons have emerged.
First, despite some pitched battles, communities have more often viewed surveillance as serving their interests.
Second, the system of public health surveillance in the U.S. remains an underfunded patchwork. The Pew Environmental Health Commission called birth defects surveillance “woefully inadequate.” In 1972, the U.S. House Committee on Government Operations described occupational disease surveillance as “70 years behind infectious disease surveillance and counting.” In 2010, we ourselves observed that it was now “a century behind and counting.”
The scope of the changes that the Trump administration has planned for federal data systems and datasets is unclear. Per a federal court order, key public health surveillance systems and datasets are back online. But the landing pages for both the Social Vulnerability Index and the Youth Risk Behavior Survey display a caveat based in politics rather than science that “any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female.”
Systems can be compromised if datasets are scrubbed of key variables that enable public health action with populations at highest risk, are halted, or are removed from the public eye. Communities cannot act on what they cannot count.
Amy Lauren Fairchild is a Professor of Sociology, Syracuse University. Ronald Bayer is a Professor Emeritus of Sociomedical Sciences, Columbia University Mailman School of Public Health.
The Conversation is an independent and nonprofit source of news, analysis and commentary from academic experts.
© The Conversation
28 Comments
virusrex
It is unfortunate that the US is destroying literally decades of public health progress, something that will cost many lives, also unfortunate is that precisely by eliminating disease tracking this consequence will remain poorly understood until (if) the tracking is once again resumed to the standards of the developed world.
Unfortunate but also completely predictable, after all the secretary of health and human services RKFjr is a well known antiscientific conspiracionist that even believe AIDS was not caused by HIV, or even that infections are produced by pathogens. With cranks like this directing the actions obviously the scientific institutions will deteriorate and proved public health interventions will simply cease to exist.
A very narrow silver lining is that the US is going to become a prime example of the negative consequences of letting public health go down the drain and likely many countries will be able to support their own systems more strongly since people will have a very negative example to learn from.
Wick's pencil
That's an extremely distorted description of RFKjr, do you have any evidence. He backs up everything he claims.
virusrex
He backs up nothing about what he claims, that is his whole deal. I mean it is impossible since he routinely claims opposite things according to what is more profitable for him.
https://edition.cnn.com/2025/01/29/politics/rfk-jr-controversial-views-senate-confirmation-hearing/index.html
Kennedy also has a long history of peddling AIDS denialism conspiracy theories, which falsely claim that HIV does not cause AIDS.
https://pauloffit.substack.com/p/understanding-rfk-jr
In short, RFK Jr. doesn’t believe in the germ theory. He believes in something called the miasma theory.
I mean, when someone genuinely thinks you can cure measles with antibiotics there is not much to say that could present him in a worse light than his own declarations.
https://www.health.com/rfk-jr-cod-liver-oil-vitamin-a-unconventional-measles-treatments-11691469
Chyobaka
Raw Beer
Strange, in RFKjr's report from 10 days ago (Measles Outbreak is Call to Action for All of Us), there is no mention of antibiotics.
https://www.hhs.gov/about/news/2025/03/03/measles-outbreak-call-to-action-for-all-of-us.html
*"It is also our responsibility to provide up-to-date guidance on available therapeutic medications. While there is no approved antiviral for those who may be infected, CDC has recently updated their recommendation supporting administration of vitamin A under the supervision of a physician for those with mild, moderate, and severe infection. Studies have found that vitamin A can dramatically reduce measles mortality."*
So the respected institutes of science (CDC) recommend vitamin A, supported by evidence (https://academic.oup.com/ije/article/39/suppl_1/i48/699532?login=false).
*"Parents play a pivotal role in safeguarding their children’s health. All parents should consult with their healthcare providers to understand their options to get the MMR vaccine. The decision to vaccinate is a personal one. Vaccines not only protect individual children from measles, but also contribute to community immunity, protecting those who are unable to be vaccinated due to medical reasons."*
Strange that an "anti-vaxxer" would say this!
*"Tens of thousands died with, or of, measles annually in 19th Century America. By 1960 -- before the vaccine’s introduction -- improvements in sanitation and nutrition had eliminated 98% of measles deaths. Good nutrition remains a best defense against most chronic and infectious illnesses. Vitamins A, C, and D, and foods rich in vitamins B12, C, and E should be part of a balanced diet.""*
Desert Tortoise
With studies that have been discredited and proven to be wrong.
virusrex
So you are surprised that something that was said on TV by him on March 4 ago is not included in something published on March 3? is chronological order something so difficult?
Evidence that it helps for those people that have clinical deficiency of vitamin A, not in the population in general, and also no, the CDC is quickly becoming less respected precisely because how it was coopted by political actors to hide the science by stopping disease tracking and repeating deeply antiscientific claims.
And of course, zero evidence to support the claim that antibiotics treat Measles, as even high school student would know (at least in non-US developed countries).
Not strange because if anything is obvious is that RFKjr supports and oppose things in self contradictory ways all the time, with the only parameter being personal profit. He is not an ideological antivaxxer, he is a conman that have profited from antivaxxer activities for decades and it is now profiting from being just antiscientific about it.
For example his claim that sanitation is the one responsible for the reduction of deaths is completely false,
https://www.idsociety.org/public-health/measles/know-the-facts/
While better sanitation (clean water, for example) has decreased the rates of diseases spread through food or water (such as cholera and typhoid), it has a minimal effect on measles, which is spread person to person and through the air. After the measles vaccine was introduced in 1963, reported cases dropped by more than 97% between 1965 and 1968, despite the fact that hygiene practices and sanitation did not significantly change during that time
As usual with him, just false claims that can easily be debunked.
Desert Tortoise
The data does not back your claim. In the ten years prior to the introduction of the measles vaccine over 500,000 died in the US each year from Measles. In the decade after the introduction, the average number of deaths was 89. If you look at older data you see that the rate of measles infection and death rose markedly from the beginning of the 20th Century peaking in the 1940s.
Scroll down to Table 2
https://www.cdc.gov/mmwr/preview/mmwrhtml/00056803.htm
This next link shows deaths and infections per 100,000 persons in the US going back to 1919. I can't find a chart with this same info showing raw numbers of infections and deaths. When viewing go to settings and change the scale from logarithmic to linear.
https://ourworldindata.org/grapher/measles-cases-and-death-rate?yScale=linear
Washing your hands and eating good won't prevent being infected. It is nonsense like that which causes epidemics
Desert Tortoise
Antibiotics have no effect on a virus like measles. Same thing for colds.
Desert Tortoise
As the chart in the second link in my post above shows, measles infection rates and death rates both began ti increase dramatically during the first half of the 20th Century, and that makes sense as the populations of US cities grew. More people living closer together absent vaccination are a recipe for widespread disease transmission.
virusrex
Yet the US secretary of health and human services says they do, and he say HIV does not cause AIDS, and that infections come from Miasma instead of germs. ¯_(ツ)_/¯
This is going to have really serious consequences on mortality rates, but nobody will know because disease tracking is being reduced as much as possible. It will be something that scientists from the future (likely from other countries) will have to investigate indirectly.
Raw Beer
Yes, but it is also well understood (by scientists/doctors, but maybe not by high school students) that bacterial infections often accompany (or follow) viral infections, and they are often the cause of death. This was true for the Spanish flu, Covid, and perhaps even measles.
Tokyo Guy
We have to think long term here.
Fact: most of the people who watch a few youtube videos and consequently think they know more than doctors are republican leaning and thus vote that way.
Fact: such people are more likely to die of a preventable disease as a result of deciding that they are not going to take no nonsense from The Man, and are instead going to let a former heroin addict and conspiracy theorist tell them how to be healthy.
Fact: more dead republican conspiracy theorists means fewer republican votes.
Reasonable conclusion based on the assumption that there will still be elections of any kind in the US: fewer republican votes = a good thing for the democrats, and for the international reputation of the USA.
Let them wallow in their conspiracy and scientific ignorance. It's for the best.
Peter Neil
the cdc has now been forbidden to release data and scientific studies before it’s vetted by a guy who made his money off peddling anti-vaccine nonsense believed by people who see a conspiracy in everything.
a west texas man who’s young unvaccinated daughter died of measles shrugged off her death, saying that everyone dies and he has no regrets in not vaccinating his children because “the vaccine has stuff we don’t trust.”
public health is supposed to educate, now it’s turning into a festering wound of misinformation. death by ignorance.
virusrex
And that is completely different from his claims, that antibiotics supposedly treat directly Measles. Treating complications is a very different thing, that is why antibiotics are not described as the treatment for any of the diseases you mention, except for the kind of people that still believe in miasma as the cause of infection.
If only were that simple, but actually irrational thinking is a "transmissible disease" on its own, so it is still perfectly possible that science denialists die more often but still manage to mislead more and more people into following the same mistakes perpetuating the problem.
Not to mention that for infectious diseases their irrational decisions also affect others and can even kill.
Raw Beer
No, that is completely wrong. Your reference mentions that in his Fox interview, he apparently said that it was used to treat the illness. But if you listen to the actual interview, he says that the antibiotic was used to treat the patients. Plus, as I wrote above, he acknowledges that there are no approved antivirals for measles. He's not the one who is confused.
https://www.foxnews.com/video/6369595673112
If RFKjr was really as bad as some make him out to be, there wouldn't be any need for misrepresentations.
virusrex
On the opposite this is completely right, antibiotics are not described as the treatment of viral infection, or gunshots, or diabetes, even when bacterial infections can complicate all those things (but is not in any way something WILL complicate on the patients). It is used to treat a very specific complication but not the illness.
He is deeply confused and wrong, as would be anybody that said
"The doctors are having very good results treating the gunshot victims with Gentamicin"
He is even worse, and there are no misrepresentations, he still believes in the Miasma theory of infections, it is difficult to get to a more obvious level of ignorance.
Raw Beer
Thing is that for certain viral infections, a major problem is the secondary bacterial infections that develop, like pneumonia. Even your own reference above states that this is "the most common cause of death from measles in young children." Didn't you read your reference?
People are so desperate to criticize RFKjr solely because he does not limit himself to new, expensive, patented treatments.
Raw Beer
Also this: "The majority of deaths during the influenza pandemic of 1918-1919 were not caused by the influenza virus acting alone, report researchers from the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health. Instead, most victims succumbed to bacterial pneumonia following influenza virus infection. The pneumonia was caused when bacteria that normally inhabit the nose and throat invaded the lungs along a pathway created when the virus destroyed the cells that line the bronchial tubes and lungs."
https://www.nih.gov/news-events/news-releases/bacterial-pneumonia-caused-most-deaths-1918-influenza-pandemic
Paul Novax
Among those were the Centers for Disease Control and Prevention’s Youth Risk Behavior Survey, which asks respondents about their gender identity and sexual orientation
Makes sense.
It is actually fortunate that such hyperbolized and highly exaggerated claim is not the reality in the US.
virusrex
The same for gunshots or diabetes and every other example, that still makes it ridiculous to say "we are treating successfully diabetic patients with antibiotics" Even if infections are common, it takes a deeply ignorant and confused person to think this is the treatment for the disease instead of an specific complication that again it is not even something that will happen for sure.
People can find hundreds of things to criticize RFKjr, the ones desperate to justify even blatantly wrong declarations are those that are interested in keeping his misrepresentations so they can mislead more people.
Since you are unable to argue or prove anything is hyperbolized or exaggerated it is clear this is not the case, this is a reality that is being presented as such by actual experts, nameless people on the internet baselessly claiming nothing wrong is happening are not something that has even remotely the same importance.
Raw Beer
Strange, I would have thought that the vast majority of gunshot deaths are from excessive blood loss or damage to vital organs. I often use an antibiotic ointment for minor scrapes and cuts; are you saying that antibiotics are not given to gunshot victims?
Anyway, since people often suffer from serious bacterial infections following a viral infection, it makes perfect sense to include an antibiotic. Many infectious disease doctors also included antibiotics (usually azithromycin) when treating Covid19.
Paul Novax
President George H.W. Bush signed the Cancer Registries Amendment Act, which mandated cancer surveillance, into law in 1992. But it was not until 2000 that all states established cancer registries.
This law enacted by a Republican President, and then the states finally established the registries under another Republican President.
Nothing to fret about, as the US is not destroying public health progress but is in fact improving it, through recent policy implementation--by a Republican President.
virusrex
What is strange about it? bacterial infection is also a possible complication, but anybody with common sense would not say it it is treating patients of gunshots with antibiotics, it would only make sense by explicitly mentioning the complication.
But in the mind of people that still believe in the miasma theory of infection this common sense is lost, causes and cures are disconnected so diseases and complications are all part of the same thing.
So no, it does not make perfect sense to treat viral infections with antibiotics, it makes sense only on patients with a specific complication.
This of course this in no way negates that reducing the registration and reporting is a deeply negative development, with decades of efforts being reduced which will cost uncountable patients lives.
On the opposite, as the article clearly describe the public health progress is being erased very importantly as the experts explain with evidence and arguments to prove it. They say this is something to worry about and that is unjustified, nameless people on the internet calling the experts wrong is not a reason not to worry, specially when not even a single argument is used to say this.
Raw Beer
Yeah, it's a possible complication, but certainly bacterial infections make up a minuscule fraction of the total casualty count. Of course, nobody would treat a gunshot only with antibiotics, but there is nothing wrong with including it as part of the treatment.
RFKjr was simply describing how some doctors had good results with certain treatments, which included antibiotics. But it seems that you and the authors at health.com thought they had a much desired gotcha moment, incorrectly assuming that RFKjr thought the antibiotics directly targeted viruses, without understanding that bacterial infections following viral infections are a major cause of death.
Certainly, the people at health.com should know better, so why did they write that article to attack RFKjr? Do they have similar funding as factcheck.org?
virusrex
The same as in diabetes, and many other diseases.
The whole point is that actual professionals don't make the mistake of thinking the treatment of specific complications is the treatment of the primary disease as RFKjr seems to do, It makes as much sense as saying that they are treating measles patients with blood transfusions or surgery just because they have a complication that makes that necessary.
In a completely wrong way, something that actual professionals with knowledge and expertise would not do. You are not justifying his mistake, just explaining why someone that should not be in charge of an elementary school infirmary made that mistake. Actual experts would clearly, unequivocally say the treatment is for one specific complication, not the primary disease or any of the other complications.
Because it is a justified motive to attack the obvious lack of capacity he demonstrates. The same as when he expresses his irrational belief on miasma instead of the germ theory or how HIV don't produce AIDS, things that are completely wrong but he still defends because he does not have the capacity to understand things correctly, which also means he can't express them correctly.
Wick's pencil
Yes, the usual desperation in attacking anyone who threatens big pharma profits. How dare he talk positively about treatments that are not patented.
virusrex
Again, the desperation is from people trying to justify mistakes that are unthinkable from anybody with an education. Also, judging from the measures that are now being implemented this is going to be a government where pharmaceutical companies are going to make record profits, the very clear example of removing caps for drugs in no way benefit people, but will make several companies extremely right.
The treatments he talks about are still a very important source of profit for companies, the problem is of course that he is deeply wrong in how he said they were used.
It is also problematic that he promotes superspreading events where it is recommended for people infected and unifected to line in close proximity for things that have no evidence of efficacy, thus guaranteeing that measles will spread between people that think suppplements without proved efficacy will do the opposite. It is difficult to make more irresponsible endorsements.