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Government Science Data May Soon Be Hidden. They’re Racing to Copy It.

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Government Science Data May Soon Be Hidden. They’re Racing to Copy It.

Amid the torrent of executive orders signed by President Trump were directives that affect the language on government web pages and the public’s access to government data touching on climate change, the environment, energy and public health.

In the past two months, hundreds of terabytes of digital resources analyzing data have been taken off government websites, and more are feared to be at risk of deletion. While in many cases the underlying data still exists, the tools that make it possible for the public and researchers to use that data have been removed.

But now, hundreds of volunteers are working to collect and download as much government data as possible and to recreate the digital tools that allow the public to access that information.

So far, volunteers working on a project called Public Environmental Data Partners have retrieved more than 100 data sets that were removed from government sites, and they have a growing list of 300 more they hope to preserve.

It echoes efforts that began in 2017, during Mr. Trump’s first term, when volunteers downloaded as much climate, environmental, energy and public health data as possible because they feared its fate under a president who has called climate change a hoax.

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Little federal information disappeared then. But this time is different. And so, too, is the response.

“We should not be in this position where the Trump administration can literally take down every government website if it wants to,” said Gretchen Gehrke, an environmental scientist who helped found the Environmental Data and Governance Initiative in 2017 to conserve federal data. “We’re not prepared for having resilient public information in the digital age and we need to be.”

While a lot of data generated by agencies, like climate measurements collected by the National Oceanic and Atmospheric Administration, is required by Congress, the digital tools that allow the public to view that data are not.

“This is a campaign to remove public access,” said Jessie Mahr, the director of technology at the Environmental Policy Innovation Center, a member group of the data partnership. “And at the end of the day, American taxpayers paid for these tools.”

The Public Environmental Data Partners coalition has received frequent requests for two data tools: the Climate and Economic Justice Screening Tool, or CEJST, and the Environmental Justice Screening Tool, or EJScreen.

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The first was developed under a Biden administration initiative to make sure that 40 percent of federal climate and infrastructure investments to go to disadvantaged communities. It was taken offline in January. EJScreen, developed under the Obama administration and once available through the E.P.A, was removed in early February.

“The very first thing across the executive branch was to remove references to equity and environmental justice and to remove equity tools from all agencies,” Dr. Gehrke said. “It really impairs the public’s ability to demonstrate structural racism and its disproportionate impacts on communities of color.”

Just a dozen years ago, the E.P.A. defined environmental justice as “the fair treatment and meaningful involvement of all people regardless of race, color, national origin, or income.” The E.P.A.’s new administrator, Lee Zeldin, recently equated environmental justice to “forced discrimination.”

Nonprofit organizations used both screening tools to apply for federal grants related to environmental justice and climate change. But the E.P.A. closed all of its environmental justice offices last week, ending three decades of work to mitigate the effects on poor and minority communities often disproportionately burdened by industrial pollution. It also canceled hundreds of grants already promised to nonprofit groups trying to improve conditions in those communities.

“You can’t possibly solve a problem until you can articulate it, so it was an important source of data for articulating the problem,” said Harriet Festing, executive director of the nonprofit group Anthropocene Alliance.

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Christina Gosnell, co-founder and president of Catalyst Cooperative, a member of the environmental data cooperative, said her main concern was not that the data won’t be archived before it disappears, but that it won’t be updated.

Preserving the current data sets is the first step, but they could become irrelevant if data collection stops, she said.

More than 100 tribal nations, cities, and nonprofits used CEJST to show where and why their communities needed trees, which can reduce urban heat, and then applied for funds from the Arbor Day Foundation, a nonprofit organization that received a $75 million grant from the Inflation Reduction Action. The Arbor Day Foundation was on track to plant over a quarter of a million new trees before its grant was terminated in February.

How hard it is to reproduce complex tools depends on how the data was created and maintained. CEJST was “open source,” meaning the raw data and information that backed it up were already publicly accessible for coders and researchers. It was put back together by three people within 24 hours, according to Ms. Mahr.

But EJScreen was not an open source tool, and recreating it was more complicated.

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“We put a lot of pressure on the last weeks of the Biden administration to make EJScreen open source, so they released as much code and documentation as they could,” Dr. Gehrke said.

It took at least seven people more than three weeks to make a version of EJScreen that was close to its original functionality, and Ms. Mahr said they’re still tinkering with it. It’s akin to recreating a recipe with an ingredient list but no assembly instructions. Software engineers have to try and remember how the “dish” tasted last time, and then use trial and error to reassemble it from memory.

Now, the coalition is working to conserve even more complicated data sets, like climate data from NOAA, which hosts many petabytes — think a thousand terabytes, or more than a million gigabytes — of weather observations and climate models in its archives.

“People may not understand just how much data that is,” Dr. Gehrke said in an email. It could cost hundreds of thousands of dollars per month just in storage fees, she said, without including the cost of any sort of access. She said they were talking to NOAA personnel to prioritize the most vulnerable and highest impact data to preserve as soon as possible.

So far, the data they’ve collected is largely stored in the cloud and backed up using servers around the globe; they’ve worked out pro bono agreements to avoid having to pay to back it up.

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Some data have, so far, been left alone, like statistics from the Energy Information Administration, among other agencies. Zane Selvans, a fellow co-founder of Catalyst Cooperative said the group had worked for the past eight years to aggregate U.S. energy system data and research in the form of open source tools. The goal is to increase access to federal data that is technically available but not necessarily easy to use.

“So far we’ve been lucky,” Mr. Selvans said. “Folks working on environmental justice haven’t been as lucky.”

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Trump administration declares ‘war on sugar’ in overhaul of food guidelines

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Trump administration declares ‘war on sugar’ in overhaul of food guidelines

The Trump administration announced a major overhaul of American nutrition guidelines Wednesday, replacing the old, carbohydrate-heavy food pyramid with one that prioritizes protein, healthy fats and whole grains.

“Our government declares war on added sugar,” Health and Human Services Secretary Robert F. Kennedy Jr. said in a White House press conference announcing the changes. “We are ending the war on saturated fats.”

“If a foreign adversary sought to destroy the health of our children, to cripple our economy, to weaken our national security, there would be no better strategy than to addict us to ultra-processed foods,” Kennedy said.

Improving U.S. eating habits and the availability of nutritious foods is an issue with broad bipartisan support, and has been a long-standing goal of Kennedy’s Make America Healthy Again movement.

During the press conference, he acknowledged both the American Medical Association and the American Assn. of Pediatrics for partnering on the new guidelines — two organizations that earlier this week condemned the administration’s decision to slash the number of diseases that U.S. children are vaccinated against.

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“The American Medical Association applauds the administration’s new Dietary Guidelines for spotlighting the highly processed foods, sugar-sweetened beverages, and excess sodium that fuel heart disease, diabetes, obesity, and other chronic illnesses,” AMA president Bobby Mukkamala said in a statement.

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Contributor: With high deductibles, even the insured are functionally uninsured

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Contributor: With high deductibles, even the insured are functionally uninsured

I recently saw a patient complaining of shortness of breath and a persistent cough. Worried he was developing pneumonia, I ordered a chest X-ray — a standard diagnostic tool. He refused. He hadn’t met his $3,000 deductible yet, and so his insurance would have required him to pay much or all of the cost for that scan. He assured me he would call if he got worse.

For him, the X-ray wasn’t a medical necessity, but it would have been a financial shock he couldn’t absorb. He chose to gamble on a cough, and five days later, he lost — ending up in the ICU with bilateral pneumonia. He survived, but the cost of his “savings” was a nearly fatal hospital stay and a bill that will quite likely bankrupt him. He is lucky he won’t be one of the 55,000 Americans to die from pneumonia each year.

As a physician associate in primary care, I serve as a frontline witness to this failure of the American approach to insurance. Medical professionals are taught that the barrier to health is biology: bacteria, viruses, genetics. But increasingly, the barrier is a policy framework that pressures insured Americans to gamble with their lives. High-deductible health plans seem affordable because their monthly premiums are lower than other plans’, but they create perverse incentives by discouraging patients from seeking and accepting diagnostics and treatments — sometimes turning minor, treatable issues into expensive, life-threatening emergencies. My patient’s gamble with his lungs is a microcosm of the much larger gamble we are taking with the American public.

The economic theory underpinning these high deductibles is known as “skin in the game.” The idea is that if patients are responsible for the first few thousand dollars of their care, they will become savvy consumers, shopping around for the best value and driving down healthcare costs.

But this logic collapses in the exam room. Healthcare is not a consumer good like a television or a used car. My patient was not in a position to “shop around” for a cheaper X-ray, nor was he qualified to determine if his cough was benign or deadly. The “skin in the game” theory assumes a level of medical literacy and market transparency that simply doesn’t exist in a moment of crisis. You can compare the specs of two SUVs; you cannot “shop around” for a life-saving diagnostic while gasping for air.

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A 2025 poll from the Kaiser Family Foundation points to this reality, finding that up to 38% of insured American adults say they skipped or postponed necessary healthcare or medications in the past 12 months because of cost. In the same poll, 42% of those who skipped care admitted their health problem worsened as a result.

This self-inflicted public health crisis is set to deteriorate further. The Congressional Budget Office estimates roughly 15 million people will lose health coverage and become uninsured by 2034 because of Medicaid and Affordable Care Act marketplace cuts. That is without mentioning the millions more who will see their monthly premiums more than double if premium tax credits are allowed to expire. If that happens, not only will millions become uninsured but also millions more will downgrade to “bronze” plans with huge deductibles just to keep their premiums affordable. We are about to flood the system with “insured but functionally uninsured” patients.

I see the human cost of this “functional uninsurance” every week. These are patients who technically have coverage but are terrified to use it because their deductibles are so large they may exceed the individuals’ available cash or credit — or even their net worth. This creates a dangerous paradox: Americans are paying hundreds of dollars a month for a card in their wallet they cannot afford to use. They skip the annual physical, ignore the suspicious mole and ration their insulin — all while technically insured. By the time they arrive at my clinic, their disease has often progressed to a catastrophic event, from what could have been a cheap fix.

Federal spending on healthcare should not be considered charity; it is an investment in our collective future. We cannot expect our children to reach their full potential or our workforce to remain productive if basic healthcare needs are treated as a luxury. Inaction by Congress and the current administration to solve this crisis is legislative malpractice.

In medicine, we are trained to treat the underlying disease, not just the symptoms. The skipped visits and ignored prescriptions are merely symptoms; the disease is a policy framework that views healthcare as a commodity rather than a fundamental necessity. If we allow these cuts to proceed, we are ensuring that the American workforce becomes sicker, our hospitals more overwhelmed and our economy less resilient. We are walking willingly into a public health crisis that is entirely preventable.

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Joseph Pollino is a primary care physician associate in Nevada.

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Ideas expressed in the piece

  • High-deductible health plans create a barrier to necessary medical care, with patients avoiding diagnostics and treatments due to out-of-pocket cost concerns[1]. Research shows that 38% of insured American adults skipped or postponed necessary healthcare or medications in the past 12 months because of cost, with 42% reporting their health worsened as a result[1].

  • The economic theory of “skin in the game”—which assumes patients will shop around for better healthcare values if they have financial responsibility—fails in medical practice because patients lack the medical literacy to make informed decisions in moments of crisis and cannot realistically compare pricing for emergency or diagnostic services[1].

  • Rising deductibles are pushing enrollees toward bronze plans with deductibles averaging $7,476 in 2026, up from the average silver plan deductible of $5,304[1][4]. In California’s Covered California program, bronze plan enrollment has surged to more than one-third of new enrollees in 2026, compared to typically one in five[1].

  • Expiring federal premium tax credits will more than double out-of-pocket premiums for ACA marketplace enrollees in 2026, creating an expected 75% increase in average out-of-pocket premium payments[5]. This will force millions to either drop coverage or downgrade to bronze plans with massive deductibles, creating a population of “insured but functionally uninsured” people[1].

  • High-deductible plans pose particular dangers for patients with chronic conditions, with studies showing adults with diabetes involuntarily switched to high-deductible plans face 11% higher risk of hospitalization for heart attacks, 15% higher risk for strokes, and more than double the likelihood of blindness or end-stage kidney disease[4].

Different views on the topic

  • Expanding access to health savings accounts paired with bronze and catastrophic plans offers tax advantages that allow higher-income individuals to set aside tax-deductible contributions for qualified medical expenses, potentially offsetting higher out-of-pocket costs through strategic planning[3].

  • Employers and insurers emphasize that offering multiple plan options with varying deductibles and premiums enables employees to select plans matching their individual needs and healthcare usage patterns, allowing those who rarely use healthcare to save money through lower premiums[2]. Large employers increasingly offer three or more medical plan choices, with the expectation that employees choosing the right plan can unlock savings[2].

  • The expansion of catastrophic plans with streamlined enrollment processes and automatic display on HealthCare.gov is intended to make affordable coverage more accessible for certain income groups, particularly those above 400% of federal poverty level who lose subsidies[3].

  • Rising healthcare costs, including specialty drugs and new high-cost cell and gene therapies, are significant drivers requiring premium increases regardless of plan design[5]. Some insurers are managing affordability by discontinuing costly coverage—such as GLP-1 weight-loss medications—to reduce premium rate increases for broader plan members[5].

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Trump administration slashes number of diseases U.S. children will be regularly vaccinated against

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Trump administration slashes number of diseases U.S. children will be regularly vaccinated against

The U.S. Department of Health and Human Services announced sweeping changes to the pediatric vaccine schedule on Monday, sharply cutting the number of diseases U.S. children will be regularly immunized against.

Under the new guidelines, the U.S. still recommends that all children be vaccinated against measles, mumps, rubella, polio, pertussis, tetanus, diphtheria, Haemophilus influenzae type B (Hib), pneumococcal disease, human papillomavirus (HPV) and varicella, better known as chickenpox.

Vaccines for all other diseases will now fall into one of two categories: recommended only for specific high-risk groups, or available through “shared clinical decision-making” — the administration’s preferred term for “optional.”

These include immunizations for hepatitis A and B, rotavirus, respiratory syncytial virus (RSV), bacterial meningitis, influenza and COVID-19. All these shots were previously recommended for all children.

Insurance companies will still be required to fully cover all childhood vaccines on the CDC schedule, including those now designated as optional, according to the Department of Health and Human Services.

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Health Secretary Robert F. Kennedy Jr., a longtime vaccine critic, said in a statement that the new schedule “protects children, respects families, and rebuilds trust in public health.”

But pediatricians and public health officials widely condemned the shift, saying that it would lead to more uncertainty for patients and a resurgence of diseases that had been under control.

“The decision to weaken the childhood immunization schedule is misguided and dangerous,” said Dr. René Bravo, a pediatrician and president of the California Medical Assn. “Today’s decision undermines decades of evidence-based public health policy and sends a deeply confusing message to families at a time when vaccine confidence is already under strain.”

The American Academy of Pediatrics condemned the changes as “dangerous and unnecessary,” and said that it will continue to publish its own schedule of recommended immunizations. In September, California, Oregon, Washington and Hawaii announced that those four states would follow an independent immunization schedule based on recommendations from the AAP and other medical groups.

The federal changes have been anticipated since December, when President Trump signed a presidential memorandum directing the health department to update the pediatric vaccine schedule “to align with such scientific evidence and best practices from peer, developed countries.”

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The new U.S. vaccination guidelines are much closer to those of Denmark, which routinely vaccinates its children against only 10 diseases.

As doctors and public health experts have pointed out, Denmark also has a robust system of government-funded universal healthcare, a smaller and more homogenous population, and a different disease burden.

“The vaccines that are recommended in any particular country reflect the diseases that are prevalent in that country,” said Dr. Kelly Gebo, dean of the Milken Institute School of Public Health at George Washington University. “Just because one country has a vaccine schedule that is perfectly reasonable for that country, it may not be at all reasonable” elsewhere.

Almost every pregnant woman in Denmark is screened for hepatitis B, for example. In the U.S., less than 85% of pregnant women are screened for the disease.

Instead, the U.S. has relied on universal vaccination to protect children whose mothers don’t receive adequate care during pregnancy. Hepatitis B has been nearly eliminated in the U.S. since the vaccine was introduced in 1991. Last month, a panel of Kennedy appointees voted to drop the CDC’s decades-old recommendation that all newborns be vaccinated against the disease at birth.

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“Viruses and bacteria that were under control are being set free on our most vulnerable,” said Dr. James Alwine, a virologist and member of the nonprofit advocacy group Defend Public Health. “It may take one or two years for the tragic consequences to become clear, but this is like asking farmers in North Dakota to grow pineapples. It won’t work and can’t end well.”

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