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Yahoo
11-03-2025
- Health
- Yahoo
From TB to HIV/AIDS to cancer, disease tracking has always had a political dimension, but it's the foundation of public health
Federal datasets began disappearing from public view on Jan. 31, 2025, 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. 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. 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. 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. 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. This article is republished from The Conversation, a nonprofit, independent news organization bringing you facts and trustworthy analysis to help you make sense of our complex world. It was written by: Amy Lauren Fairchild, Syracuse University and Ronald Bayer, Columbia University Mailman School of Public Health Read more: COVID-19 is the latest epidemic to show biomedical breakthroughs aren't enough to eliminate a disease Public health surveillance, from social media to sewage, spots disease outbreaks early to stop them fast How to find climate data and science the Trump administration doesn't want you to see Amy Lauren Fairchild has received funding from NIH and the RWJ Foundation. She currently receives funding from the Commonwealth Fund, the Mellon Foundation, and the National Science Foundation. Ronald Bayer has received funding from the RWJ Foundation and NIH.
Yahoo
31-01-2025
- Health
- Yahoo
CDC Data Is Disappearing
Last night, scientists began to hear cryptic and foreboding warnings from colleagues: Go to the CDC website, and download your data now. They were all telling one another the same thing: Data on the website were about to disappear, or be altered, to comply with the Trump administration's ongoing attempt to scrub federal agencies of any mention of gender, DEI, and accessibility. 'I was up until 2 a.m.,' Angela Rasmussen, a virologist at the Vaccine and Infectious Disease Organization at the University of Saskatchewan who relies on the CDC's data to track viral outbreaks, told me. She archived whatever she could. What they feared quickly came to pass. Already, content from the CDC's Youth Risk Behavior Surveillance System, which includes data from a national survey, has disappeared; so have parts of the Agency for Toxic Substances and Disease Registry's Social Vulnerability Index and the Environmental Justice Index. The CDC's landing page for HIV data has also vanished. And the agency's AtlasPlus tool, which contains nearly 20 years of CDC surveillance data on HIV, hepatitis, sexually transmitted infections, and tuberculosis, is down. Several scientists I talked with told me they had heard directly from contacts at the CDC that the agency has directed employees to scrub any mention of 'gender' from its site and the data that it shares there, replacing it with 'sex.' The full scope of the purge isn't yet clear. One document obtained by The Atlantic indicated that the government was, as of yesterday evening, intending to target and replace, at a minimum, several 'suggested keywords'—including 'pregnant people, transgender, binary, non-binary, gender, assigned at birth, binary [sic], non-binary [sic], cisgender, queer, gender identity, gender minority, anything with pronouns'—in CDC content. While these terms are often politicized, some represent demographic variables that researchers collect when tracking the ebb and flow of diseases and health conditions across populations. Should they be reworded, or even removed entirely, from data sets to comply with the executive order, researchers and health-care providers might have a much harder time figuring out how diseases affect specific communities—making it more challenging to serve Americans on the whole. CDC data's 'explicit purpose' is to guide researchers toward the places and people who most need attention, Patrick Sullivan, an epidemiologist at Emory University and a former CDC Epidemic Intelligence Service officer, told me. As the changes unfold before him, he said, 'it's hard to understand how this benefits health.' When I contacted the CDC, a spokesperson redirected my requests for comment to the Department of Health and Human Services, which did not respond. The government appears to understand that these changes could have scientific implications: The document directing a review of CDC content suggests that some work could be altered without 'changing the meaning or scientific integrity of the content,' and that any such changes should be considered 'routine.' Changing other content, according to the document, would require review by an expert precisely because any alterations would risk scientific integrity. But the document does not specify how data would be sorted into those categories, or at whose discretion. 'My fear is that in the short term, entire data sets would be taken down,' then reappear with demographic variables removed or altered to conform with DEI restrictions, Katie Biello, an epidemiologist at Brown, told me. Excising mention of gender and sexual orientation, for instance, from public-health data sets could require stripping entire columns of data out. If the government chooses to define sex as binary, transgender people and nonbinary people, among others, could be effectively erased. In response to the ongoing changes, some groups of researchers are now rushing to archive the CDC website in full. Acknowledging and addressing health differences among demographic groups is a basic epidemiological tenet, Biello told me, 'so we know where to target our health interventions.' She pointed to examples in her own field: Gay men have higher rates of STIs, but lower rates of obesity; transgender women have higher rates of HIV, but lower rates of prostate cancer. More broadly, demographic changes to data sets could limit the country's ability to identify which Americans are most at risk from an expansive list of conditions including adolescent depression, STIs, even sex-specific cancers. Changing data sets in this way would be tantamount to 'erasing our ability to use data and evidence' to care for people, Rachel Hardeman, a health-equity expert at the University of Minnesota, told me. Jennifer Nuzzo, an epidemiologist at Brown, pointed to mpox as a recent example of how replacing 'gender' with 'sex,' or ignoring sexual orientation, could limit effective public-health responses. At the beginning of the United States' 2022 outbreak, neither researchers nor the public had much clarity on who was most affected, leading to widespread panic. 'Officials were talking about the situation as if it was a risk we equally faced,' Nuzzo said. By collecting detailed demographic information, researchers were able to show that the disease was primarily affecting men who have sex with men, allowing officials to more efficiently allocate resources, including vaccines, and bring the epidemic under control before it affected Americans more widely. A scrub such as this could also change how the government allocates funds for long-standing threats to public health, which could widen health-equity gaps, or reverse progress in combatting them. Rates of STIs more generally have recently begun to plateau in the U.S., after decades of steady increase—but altering data that focus interventions on, say, transgender populations, or men who have sex with men, could undo those gains. If no data exist to prove that a health issue concentrates within a particular community, that 'provides a justification to cut funding,' one researcher told me. (Several scientists who spoke with me for this article requested anonymity, for fear of retaliation for speaking out about the loss of federal data.) Sullivan, whose work focuses on HIV surveillance, compared the government's actions to, effectively, destroying the road map to determining who in America most needs screening, pre-exposure prophylaxis, and treatment. Much of the data on the CDC website have been aggregated from states, so it would be possible for researchers to reassemble those data sets, Nuzzo pointed out. But that's an onerous task, and several scientists told me they never thought they'd be in a position where they'd have to scramble to squirrel away publicly available federal data. Nuzzo also worried that states might be reluctant in the future to share data with the federal government, or might decide not to bother collecting certain data at all. On the most basic scientific level, changing federal-government data means those data become unreliable. Public-health data are collected with the intention of sussing out which populations most need health interventions; altering those data leaves behind a skewed portrait of reality. Article originally published at The Atlantic
Atlantic
31-01-2025
- Health
- Atlantic
The CDC Is Altering Data to Follow Trump's DEI Order
Last night, scientists began to hear cryptic and foreboding warnings from colleagues: Go to the CDC website, and download your data now. They were all telling one another the same thing: Data on the website were about to disappear, or be altered, to comply with the Trump administration's ongoing attempt to scrub federal agencies of any mention of gender, DEI, and accessibility. 'I was up until 2 a.m.,' Angela Rasmussen, a virologist at the Vaccine and Infectious Disease Organization at the University of Saskatchewan who relies on the CDC's data to track viral outbreaks, told me. She archived whatever she could. What they feared quickly came to pass. Already, content from the CDC's Youth Risk Behavior Surveillance System, which includes data from a national survey, has disappeared; so have parts of the Agency for Toxic Substances and Disease Registry's Social Vulnerability Index and the Environmental Justice Index. The CDC's landing page for HIV data has also vanished. And the agency's AtlasPlus tool, which contains nearly 20 years of CDC surveillance data on HIV, hepatitis, sexually transmitted infections, and tuberculosis, is down. Several scientists I talked with told me they had heard directly from contacts in the CDC that the agency has directed employees to scrub mention of 'gender' from its site and the data that it shares there, replacing it with 'sex.' The full scope of the purge isn't yet clear. One document obtained by The Atlantic indicated that the government was, as of yesterday evening, intending to target and replace, at a minimum, several 'suggested keywords'—including 'pregnant people, transgender, binary, non-binary, gender, assigned at birth, binary [ sic ], non-binary [ sic ], cisgender, queer, gender identity, gender minority, anything with pronouns'—in CDC content. While these terms are often politicized, some represent demographic variables that researchers collect when tracking the ebb and flow of diseases and health conditions across populations. Should they be reworded, or even removed entirely, from data sets to comply with the executive order, researchers and health-care providers might have a much harder time figuring out how diseases affect specific communities—making it more challenging to serve Americans on the whole. CDC data's 'explicit purpose' is to guide researchers toward the places and people who most need attention, Patrick Sullivan, an epidemiologist at Emory University and a former CDC Epidemic Intelligence Service officer, told me. As the changes unfold before him, he said, 'it's hard to understand how this benefits health.' When I contacted the CDC, a spokesperson redirected my requests for comment to the Department of Health and Human Services, which did not respond. The government appears to understand that these changes could have scientific implications: The document directing a review of CDC content suggests that some work could be altered without 'changing the meaning or scientific integrity of the content,' and that any such changes should be considered 'routine.' Changing other content, according to the document, would require review by an expert precisely because any alterations would risk scientific integrity. But the document does not specify how data would be sorted into those categories, or at whose discretion. 'My fear is that in the short term, entire data sets would be taken down,' then reappear with demographic variables removed or altered to conform with DEI restrictions, Katie Biello, an epidemiologist at Brown, told me. Excising mention of gender and sexual orientation, for instance, from public-health data sets could require stripping entire columns of data out. If the government chooses to define sex as binary, transgender people and nonbinary people, among others, could be effectively erased. In response to the ongoing changes, some groups of researchers are now rushing to archive the CDC website in full. Acknowledging and addressing health differences among demographic groups is a basic epidemiological tenet, Biello told me, 'so we know where to target our health interventions.' She pointed to examples in her own field: Gay men have higher rates of STIs, but lower rates of obesity; transgender women have higher rates of HIV, but lower rates of prostate cancer. More broadly, demographic changes to data sets could limit the country's ability to identify which Americans are most at risk from an expansive list of conditions including adolescent depression, STIs, even sex-specific cancers. Changing data sets in this way would be tantamount to 'erasing our ability to use data and evidence' to care for people, Rachel Hardeman, a health-equity expert at the University of Minnesota, told me. Jennifer Nuzzo, an epidemiologist at Brown, pointed to mpox as a recent example of how replacing 'gender' with 'sex,' or ignoring sexual orientation, could limit effective public-health responses. At the beginning of the United States' 2022 outbreak, neither researchers nor the public had much clarity on who was most affected, leading to widespread panic. 'Officials were talking about the situation as if it was a risk we equally faced,' Nuzzo said. By collecting detailed demographic information, researchers were able to show that the disease was primarily affecting men who have sex with men, allowing officials to more efficiently allocate resources, including vaccines, and bring the epidemic under control before it affected Americans more widely. A scrub such as this could also change how the government allocates funds for long-standing threats to public health, which could widen health-equity gaps, or reverse progress in combatting them. Rates of STIs more generally have recently begun to plateau in the U.S., after decades of steady increase—but altering data that focus interventions on, say, transgender populations, or men who have sex with men, could undo those gains. If no data exist to prove that a health issue concentrates within a particular community, that 'provides a justification to cut funding,' one researcher told me. (Several scientists who spoke with me for this piece requested anonymity, for fear of retaliation for speaking out about the loss of federal data.) Sullivan, whose work focuses on HIV surveillance, compared the government's actions to, effectively, destroying the road map to determining who in America most needs screening, pre-exposure prophylaxis, and treatment. Much of the data on the CDC website have been aggregated from states, so it would be possible for researchers to reassemble those data sets, Nuzzo pointed out. But that's an onerous task, and several scientists told me they never thought they'd be in a position where they'd have to scramble to squirrel away publicly available federal data. Nuzzo also worried that states might be reluctant in the future to share data with the federal government, or might decide not to bother collecting certain data at all. On the most basic scientific level, changing federal-government data means those data become unreliable. Public-health data are collected with the intention of sussing out which populations most need health interventions; altering those data leaves behind a skewed portrait of reality.
