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A 43-year-old woman and mother of two with advanced cancer says she is experiencing life-or-death delays in treatment because of the Trump administration’s cuts to the National Institutes of Health (NIH).Natalie Phelps, who has stage 4 colorectal cancer, has spoken publicly, raising the alarm about a setback in care for herself and others who are part of clinical trials run by the agency. Her story has made it into congressional hearings and spurred a spat between a Democratic senator and the US health secretary, Robert F Kennedy Jr. Behind the scenes, she and others are advocating to get her treatment started sooner.So far, Phelps has been told that her treatment, which should have started around mid-June, will not begin until after mid-July.“I’ve done everything I can do,” Phelps, who lives in Washington state, told the Guardian. “There’s nothing else I can do. I’m really just out of options. There’s very limited treatments approved for colorectal cancer.”Phelps is one of many Americans whose lives have been disrupted or altered by the ongoing cuts to government services made by the Trump administration’s so-called “department of government efficiency”, or Doge. Some NIH scientists have lost their jobs, and others have seen their grants ended. Researchers told the Associated Press that cuts to the agency and its programs would end treatment for cancer patients and delay cures and treatment discoveries.View image in fullscreenPhelps was diagnosed in 2020, soon after giving birth to her second child, and after her symptoms were dismissed by doctors for months. Since then, she’s gone through 48 rounds of chemotherapy. She had an 18-hour surgery to remove her primary tumor, plus two follow-up liver surgeries. She’s had radiation therapy to her brain, leg and pelvis.Dr Steven Rosenberg’s cell-based immunotherapy trial at the NIH offered hope. The treatment uses a person’s own cells to fight cancer and has seen some promise for patients with colon, rectal and GI cancers. This was deemed an exciting step by the medical community because the process had previously worked on blood cancers, but not solid cancers, the Washington Post reported.But these promising developments are coming alongside cuts to federal agencies, including ones that have affected these trials, Rosenberg has publicly confirmed. The trial itself was not cut, but it is experiencing delays because of staff reductions, Rosenberg has said.Phelps passed the initial medical steps to enter the trial in March, then flew to Bethesda, Maryland, at the end of April this year. There, they drew her blood to use to engineer T-cells for her treatment, which she previously was told takes about four weeks. Instead, she was told it would now take eight weeks, which the doctors said was because of funding cuts imposed by Doge.“That got me motivated enough to start to really panic, because my cancer between March and April really exploded and progressed to my lymph nodes and my bones,” she said. “My oncologist was very anxious about the difference between four and eight weeks could make, waiting for those treatment products.”One month can make a huge difference in late-stage cancer treatment, but the delay also brought up major decisions for Phelps. She wouldn’t be able to do chemo for a month before the treatment began. With a delay, she could maybe do chemo for a bit, then stop a month before.Then there was the size of her tumors – which would become the subject of the spat in a congressional hearing. She needed a tumor of at least one centimeter in size to start the trial, or an exemption – her disease was spreading in the number of tumors, not in one large tumor. The tumor would help scientists track how the treatment was working.View image in fullscreenIf she underwent chemo before doing a final scan needed to start the trial, tumors could shrink, affecting her eligibility. But if she waited for two months and did nothing, the disease could keep spreading. Her oncologist thought maybe the trial would have to be placed on the back burner, given the extended timeline.Phelps posted on social media, explaining her predicament. After seeing her videos, friends suggested she reach out to her members of Congress, who could intervene with the agency and help her get treated sooner.The office of Patty Murray, a Washington Democratic senator, got involved. On 14 May, Murray questioned Kennedy during a Senate health, education, labor and pensions committee hearing, sharing Phelps’ story and asking how many staff have been cut from the NIH’s clinical center. Kennedy said to reach out to his office for specifics on Phelps and claimed no cuts had been made to clinical trials. “I don’t think that should happen to anybody,” he said.Later in the hearing, though, Kennedy said his office had looked into the case and claimed that Phelps was “medically ineligible” for the trial, so her case had nothing to do with staff reductions. “That was a canard,” he told the committee, and he told Murray: “You don’t care. You don’t care about Natalie.” The exchange became a Fox News headline.It was a “spurious statement” to say she was medically ineligible, Phelps said – she was waiting for one final scan to see if her tumor was one centimeter, but had met all other criteria. She had a scan the day after the hearing, which showed her tumor had now grown large enough to qualify.“It’s been so much extra stress. The night after the hearing, I threw up all night. I barely made it to my scan because I was so stressed out,” she said. “It’s been very intense emotionally and an extreme added stress that nobody needs. Cancer just shouldn’t be political.”In a Senate appropriations hearing the next week, Kennedy again argued with Murray, saying it was “untrue” that Phelps’ care was delayed. In statements after the second exchange, Murray said her staff has been in “constant touch” with career staff at the NIH and the FDA to get help on Phelps’ case.“I still have no answer about how many NIH clinical staff have been fired,” Murray’s 20 May statement says. “I still have no answer why Natalie was told by her NIH doctor that her care was being delayed due to staffing cuts. For weeks, my staff has been demanding answers about agency staffing cuts.”In a statement, a spokesperson for the Department of Health and Human Services (HHS) said cancer research is a “high priority” for the NIH and HHS.“Ongoing investments reflect our dedication to addressing both urgent and long-term health challenges,” the agency said. “There have been no cuts to clinical trials.”In another statement sent after publication, the agency said the claim that patients were seeing treatment delays because of reductions in force was “false”.“No clinical trials have been cut. No personnel involved in direct patient care were affected by the RIF,” the agency said.“Clinical trials continue to be conducted in accordance with established protocols and patient safety standards. NIH investigators are responsible for ensuring trials are appropriately staffed, that patient enrollment aligns with trial capacity, and that participants are fully informed of timelines and potential risks of experimental treatments. We do not comment on individual patient cases in accordance with the Privacy Act and to protect patient confidentiality.”But Rosenberg, the doctor leading the trial Phelps is in, confirmed to the Washington Post in April that two patients were delayed care because of staff cuts and “purchasing slowdowns”, and these delays were confirmed before big layoffs hit the agency.Rosenberg didn’t respond to requests for comment this week. He previously told the Cancer Letter, an oncology publication, that Phelps was, at the time of the hearing, not eligible because of her tumors’ size, but was scheduled for additional scans to see if they had grown. He confirmed that, if determined eligible, her case would be delayed by a month because of reductions in force.Phelps wasn’t alone, he told the publication – nearly all of the trial patients were seeing a delay of about a month, which he attributed to a “loss of technicians” as part of reductions in force done by the Trump administration. It isn’t just delays, either.“We’ve had to drop the number of patients we treat by about half. We’re just having to turn away more patients,” Rosenberg said.Phelps is still waiting to hear when she can start treatment. As of last Thursday, she was told she had a spot in the queue and the agency was seeing if her treatment could be moved up. On Tuesday, she was told it would now be 21 July. The NIH told her the agency tried to hire back staff, but it hasn’t worked out.“I have nothing to lose at this point. I’m pleading for my life. I’m begging for help,” she said. More
Robert F Kennedy Jr’s flagship health commission report contains citations to studies that do not exist, according to an investigation by the US publication Notus.The report exposes glaring scientific failures from a health secretary who earlier this week threatened to ban government scientists from publishing in leading medical journals.The 73-page “Make America healthy again” report – which was commissioned by the Trump administration to examine the causes of chronic illness, and which Kennedy promoted it as “gold-standard” science backed by more than 500 citations – includes references to seven studies that appear to be entirely invented, and others that the researchers say have been mischaracterized.Two supposed studies on ADHD medication advertising simply do not exist in the journals where they are claimed to be published. Virginia Commonwealth University confirmed to Notus that researcher Robert L Findling, listed as an author of one paper, never wrote such an article, while another citation leads only to the Kennedy report itself when searched online.Harold J Farber, a pediatric specialist supposedly behind research on asthma overprescribing, told Notus he never wrote the cited paper and had never worked with the other listed authors.The US Department of Health and Human Services has not immediately responded to a Guardian request for comment.The citation failures come as Kennedy, a noted skeptic of vaccines, criticized medical publishing this week, branding top journals the Lancet, New England Journal of Medicine and Jama as “corrupt” and alleging they were controlled by pharmaceutical companies. He outlined plans for creating government-run journals instead.Beyond the phantom studies in Kennedy’s report, Notus found it systematically misrepresented existing research.For example, one paper was claimed to show that talking therapy was as effective as psychiatric medication, but the statistician Joanne McKenzie said this was impossible, as “we did not include psychotherapy” in the review.The sleep researcher Mariana G Figueiro also said her study was mischaracterized, with the report incorrectly stating it involved children rather than college students, and citing the wrong journal entirely.The Trump administration asked Kennedy for the report in order to look at chronic illness causes, from pesticides to mobile phone radiation. Kennedy called it a “milestone” that provides “evidence-based foundation” for sweeping policy changes.A follow-up “Make our children healthy again strategy” report is due in August, raising concerns about the scientific credibility underpinning the administration’s health agenda. More
The US health secretary, Robert F Kennedy Jr, announced that the federal Centers for Disease Control and Prevention (CDC) would remove Covid-19 booster shots from its recommended immunization schedule for healthy children and pregnant women.Legal experts said the Trump administration appointee’s decision, which Kennedy announced on social media, circumvented the CDC’s authority to recommend such changes – and that it is unprecedented for a health secretary to unilaterally make such a decision.“I couldn’t be more pleased to announce that as of today, the Covid vaccine shot for healthy children and healthy pregnant women has been removed from the CDC’s recommended immunization schedule,” Kennedy said in the announcement.Kennedy claimed Joe Biden’s administration last year “urged healthy children to get yet another Covid shot despite the lack of any clinical data to support the repeat booster strategy in children”.The secretary was flanked by Food and Drug Administration (FDA) commissioner – Dr Marty Makary – and the head of the National Institutes of Health (NIH), Dr Jay Bhattacharya. Neither the head of the FDA nor of the NIH would typically be involved in making vaccine administration recommendations.Bhattacharya said the announcement was “common sense and good science”.Removing the booster shot from the recommended immunization schedule could make it more difficult to access – and it could affect private insurers’ willingness to cover the vaccine. About half of Americans receive healthcare through a private insurance company.Such a unilateral change is highly unusual if not unprecedented for a typical US Department of Health and Human Services (HHS) secretary. And it could leave the HHS department open to litigation, said one vaccine law expert.“The secretary has never been involved in making Covid-19 vaccine recommendations – any vaccine recommendations,” said Dorit Reiss, a law professor at the University of California San Francisco who has closely followed attempts to circumscribe access to Covid-19 vaccines.It is not clear whether the social media announcement was accompanied by formal documentation of the change. Annual Covid-19 booster shots were still recommended for children on the CDC’s website Tuesday morning. It is unclear how Tuesday’s announcement could affect federal programs, such as Vaccines for Children, which provides shots to uninsured and under-insured children.“I am surprised at the open contempt they are showing to the process and not even pretend to do it in a substantive and deliberative way,” Reiss said. “If only because I would think they want to make it as litigation-proof as they can.”The change further sends conflicting messages about the importance of Covid-19 vaccination during pregnancy. The CDC says people are at increased risk of severe illness if they contract Covid-19 during pregnancy, including heightened risk of hospitalization and the need for intensive care.That evidence was acknowledged by Makary in a similarly unprecedented article in the New England Journal of Medicine, which announced changes to the way the FDA would license Covid-19 vaccines. In that article, pregnancy and recent pregnancy were listed among “underlying medical conditions that can increase a person’s risk of severe Covid-19”.Further, there is evidence that mothers who are vaccinated pass protective immunity to infants. Infants younger than six months are at the highest risk of severe disease among children, with the risk to children younger than four years old on par with that of 50-64-year-old adults, according to the Journal article.Typically, changes to vaccine administration recommendations are first considered by the CDC’s advisory committee on vaccine practices (ACIP), a group of independent vaccine experts. ACIP meetings are public, meaning in a normal process Americans can watch experts debate the validity of different approaches in real time before a vote. Although the CDC does not always take the group’s advice, it often does. The CDC was without a permanent director as of Tuesday, a little more than four months into Donald Trump’s second presidency.ACIP recommendations are then counter balanced by recommendations from the FDA’s vaccine and related biologics products advisory committee, which has a similar structure and transparency measures. That group met five days earlier to recommend strains to include in this fall’s Covid-19 booster shot, settling on the JN.1 lineage.Kennedy’s announcement comes as the Trump administration has packed HHS with “Covid contrarians” – a colloquial term used by researchers to describe people, typically critics, who do not accept mainstream public health’s recommendations to prevent Covid-19.Congressional Republicans allied with Trump have also continued to flog the Biden administration’s response to the pandemic in hearings. Vaccine hesitancy has become much more common among Republican party voters than it once was, a Gallup poll has found. More
Donald Trump’s health secretary and long-time vaccine skeptic, Robert F Kennedy Jr, presented a highly anticipated report on children’s health this week.The “Maha commission” report, referring to the “Make America healthy again” movement, was required by a presidential executive order in February. The report focuses on chronic disease among children.The 68-page report broadly summarizes five areas affecting children’s health, with a focus on ultra-processed foods, environmental chemical exposure, lack of physical activity, “overmedicalization”, and “capture” of regulatory agencies.It notably omits some of the most common causes of chronic disease and death in children, insinuates there could be harms where there is lack of evidence, and avoids discussing how Republicans have already changed the health system in ways researchers believe are harmful.Art Caplan, a professor of bioethics at New York University’s Grossman School of Medicine, told the Guardian that the report has “interesting ideas about health and children’s health and crackpot fringe tin-hat-wearing nonsense – it’s got it all”.Here are five of the key takeaways from the report.1. The report ignores some common dangers to childrenThe most common causes of death among children are car crashes and firearm accidents. The report ignores these issues, as well as behaviors that often start in adolescence and lead to chronic disease in adulthood, such as smoking and alcohol use. It also criticizes water fluoridation, without mentioning its protective effects against cavities.Also, absent from the report is a discussion of how the administration has already changed the health department in ways that advocates argue will benefit industry and could exacerbate chronic disease.For instance, Kennedy eliminated two smoking prevention offices at the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) in what one former regulator told Stat was “the greatest gift to the tobacco industry in the last half century”. He also eliminated a world-leading sexually transmitted infection laboratory.In another example, one of the nation’s leading researchers of ultra-processed foods quit his “dream job” after facing what he described as censorship from the administration (the health department reportedly asked him to return). In a similar vein, the Trump administration cut a program that delivered local whole foods to schools soon after taking office, in spite of Kennedy calling for healthier school meals.2. The report focuses on issues key to Kennedy’s view of healthThe report is roughly broken up into five sections focusing on ultra-processed foods, environmental chemical exposures, children’s mental health, “overmedicalization” and “corporate capture” of regulators by the industries they are supposed to oversee.Kennedy has harped on many of the issues listed in the report for months in public appearances and even though his defunct presidential campaign – especially including ultra-processed foods and obesity. Although some of these concerns may find bipartisan support – such as the focus on “forever chemicals” such as Pfas – it also pushes into areas where the science is unsettled.For instance, the report mentions that high levels of fluoride are potentially associated with reduced IQ, but does not mention its well-established protective effects against cavities – the most common chronic condition in children, according to the National Institute of Dental and Craniofacial Research.Similarly, the report argues that the childhood vaccine schedule is causing concern among parents for,“their possible role in the growing childhood chronic disease crisis” – without citing evidence that vaccines are linked to any specific chronic disease.3. It’s likely to face diverse pushback – and create new alliancesEven before the report was published, congressional lawmakers were being bombarded by calls from agricultural and chemical lobbyists wary of how the report would criticize their products – and indeed it did.One of the report’s sections questions whether “crop protection tools” including “pesticides, herbicides and insecticides” could harm human health. It then specifically name-drops glyphosate, the key ingredient in Roundup, and atrazine, a common herbicide. That is sure to make for strange political bedfellows and consternation within the Republican party. Similarly, the report cites synthetic dyes and ultra-processed foods are potentially harmful.Chemicals and food additives have been issues of concern for decades on the left. However, the Maha movement has also catalyzed opposition to them on the right.4. The report’s authors are not namedThe commission’s members are made up of the heads of intersecting agencies, including Kennedy at the Department of Health and Human Services, and the heads of the departments of agriculture, housing, education, veterans affairs and the Environmental Protection Agency, among others.However, the exact authors of the report are unknown. This contrasts with Kennedy’s repeated promise at his confirmation hearing that his health department would practice “radical transparency”.The work of the “Maha” commission was reportedly spearheaded by senior Kennedy adviser Calley Means, a former food lobbyist and healthcare entrepreneur who rose to prominence as a Maha truth-teller. Means co-wrote a bestselling book with his sister, current US surgeon general nominee Casey Means, which blames many of America’s ills on sedentary lifestyle and poor diet.5. Changing any of the issues identified is likely to be toughOne of the key issues the report identifies is the influence of food, pharmaceutical and chemical companies on American policy. They are monied and powerful.As a result, getting real change through Congress is certain to be tough – especially in an administration devoted to reducing regulations. More
The US health secretary doesn’t think you should really listen to him when it comes to health issues. During an appearance before House and Senate committees this week, Robert F Kennedy Jr, famous for his unconventional views about medicine and his revelation that a parasite ate part of his brain, seemed to think it was strange that lawmakers were asking him about vaccines.“What I would say is my opinions about vaccines are irrelevant,” Kennedy said when pressed on whether he would vaccinate his child for measles. “I don’t want to seem like I’m being evasive, but I don’t think people should be taking advice, medical advice, from me.” The US health secretary repeated his refrain about not wanting to give advice a number of other times.I, on the other hand, am desperate to dole out a bit of advice. Namely: it would probably be a good idea if a few people who actually knew what they were talking about were brought into the US government. I know, I know. Look at me being a crazy idealist! Still, at the very least, it might be wise to at least ensure that the people who are in charge of health issues know a thing or two about medicine.Alas, judging by some of Donald Trump’s latest appointments, it would seem that I am asking far too much. See, for example, Dr Casey Means, who was nominated for US surgeon general last week. Means has got “Dr” in front of her name, which sounds promising, but she’s more of an influencer than a practitioner. Though she trained as a surgeon at Stanford, she never completed her medical residency afterward. Why? She says it’s because she was disillusioned with traditional medicine, but a former colleague told the Los Angeles Times that it was due to anxiety. Means also doesn’t have an active medical license. In short: she wouldn’t be able to get a job as a doctor at your local hospital but she’s being considered for the role of “the nation’s doctor”. As for experience working in government? She doesn’t have any of that, either.What Means does have, Trump announced in a recent social media post, are “impeccable ‘MAHA’ credentials”. That’s the “Make America healthy again” movement: a movement that is preoccupied with some very valid issues (processed food, corruption in the health industry) but mired in conspiracist thinking. Means has been on TV a lot to talk about Maha obsessions such as removing fluoride from drinking water. She also makes money from dietary supplements that she promotes on social media and has co-authored a book with her brother that claims “almost every chronic health symptom that Western medicine addresses is the result of our cells being beleaguered by how we’ve come to live”. Which, of course, isn’t completely false but has been accused of being overly simplistic. Means’s brother, by the way, is also a prominent adviser to Kennedy.So are all the Maha crowd rejoicing in the streets at the idea of Means becoming surgeon general? Not quite. Her nomination has actually sparked Maha infighting. Some Maha voices think Means is not extreme enough, particularly when it comes to the Covid shot. These people seem to want a surgeon general who declares Covid was a hoax and bans vaccines altogether.The far-right conspiracy theorist Laura Loomer, meanwhile, who seems to have become one of Trump’s most influential albeit unofficial advisers, isn’t happy with Means because she thinks she’s unserious. Writing on Twitter/X, Loomer said Means “PRAYS TO INANIMATE OBJECTS, COMMUNICATES WITH SPIRIT MEDIUMS, USES SHROOMS AS ‘PLANT MEDICINE’ AND TALKS TO TREES! SHE ALSO DOESN’T EVEN HAVE AN ACTIVE MEDICAL LICENSE.”Loomer isn’t the only one a little worried about Means’s enthusiasm for psychedelic drugs including magic mushrooms – which the prospective surgeon general once suggested in a newsletter helped her find a romantic partner. Psilocybin, a psychedelic compound found in certain mushrooms, is currently listed as a schedule I drug, defined as a substance “with no currently accepted medical use and a high potential for abuse”.Means should probably be a little worried about what Loomer thinks, as Loomer may have played a part in ousting Trump’s original pick for the position. That was Janette Nesheiwat, a former Fox News medical contributor and the sister-in-law of Mike Waltz, the former national security adviser. On X this month, Loomer called Nesheiwat “a pro-Covid vaccine nepo appointee” who “didn’t go to medical school in the US”. (Nesheiwat has said that she got a degree from the University of Arkansas School of Medicine, but it would seem that she actually earned her medical degree from a school in Sint Maarten.)Will Loomer topple Means before her confirmation (which hasn’t been scheduled yet) as well? I don’t know but I can tell you that if she does, it’s unlikely that her successor will be any more qualified. The Trump administration, as we all know, has been waging war on diversity, equity and inclusion (DEI). If you’re a (non-Trump-loving) woman or a minority, it doesn’t seem to matter how many qualifications you have, you’re automatically considered a “DEI hire” and looked upon with suspicion. Many prominent people in the Trump administration, meanwhile, seem to be WTF hires. They are there because they’re white, Trumpy and often in the family of someone influential (or they have been on Fox News). Whether we get Means or not, you can be sure that whoever is confirmed as the nation’s top doctor will be completely unqualified to treat the US’s Trump-induced ailments.
Arwa Mahdawi is a Guardian columnist More
The US health secretary, Robert F Kennedy Jr, has revealed that he went swimming with his children in a Washington DC creek that authorities have said is toxic due to contamination by an upstream, ageing sewer system.The “Make America healthy again” crusader attracted attention for the Mother’s Day dip in Dumbarton Oaks Park with his grandchildren Bobcat and Cassius, which he posted about on X. He was also accompanied by relatives Amaryllis, Bobby, Kick and Jackson.Rock Creek, which runs through the federal park, is described as unsafe for swimming or wading because it acts as a runoff for excess sewage and storm water during rain storms.Studies of streams in the nation’s capital have revealed “chronic elevated levels of Escherichia coli (E coli) contamination that exceeded DC’s surface water quality standards”, according to one published in 2021.The District of Columbia banned swimming in all waterways in 1971, citing “extraordinarily high levels of pollutants from human and animal waste containing bacteria such as salmonella and hepatitis, and viruses”.Separately, the National Park Service has said: “Rock Creek has high levels of bacteria and other infectious pathogens that make swimming, wading, and other contact with the water a hazard to human (and pet) health. All District waterways are subject to a swim ban – this means wading, too!”Part of the issue is that the District’s combined sewer system was developed before 1900, and – like New York City sewage and rain systems – is designed to combine to ease runoff, bypassing water treatment plants.In Washington, according to Open Data DC: “Release of this excess flow is necessary to prevent flooding in homes, basements, businesses, and streets. [Combined sewer overflows] are discharged to the Anacostia River, Rock Creek, Potomac River or tributary waters at CSO outfalls during most moderate rain events.”Kennedy, an avid outdoorsman, had not responded to a request for comment as of publication time, and has not posted on social media about it.In an interview with Fox News on Sunday, Kennedy described himself as a “renegade”. Joined by other appointees to the federal health agency – including the TV doctor Mehmet Oz, Marty Makary and Jay Bhattacharya – he said: “The entire leadership of this agency are renegades who are, you know, who are juggernauts against convention and who are trying to look for truth, no matter what the cost.”On Sunday, Kennedy joined Donald Trump to unveil a new administration plan to lower high US prescription drug prices. He thanked the US president for standing “up to the oligarchs” and took aim at Vermont senator Bernie Sanders, who has made drug pricing a signature issue of his political platform.“It’s one of these promises that politicians make to their constituents knowing that they’ll never have to do it,” the former 2024 Democratic turned independent presidential candidate said.Sanders later scoffed at the administration’s plan, saying it “will be thrown out by the courts”.Kennedy is known for taking risks of a biological kind. He admitted to transporting a roadkill bear cub to New York’s Central Park, and his daughter Kick described a childhood adventure when her father transported a rotting whale head on top of their car from Nantucket to their Westchester home.Had Kennedy’s foray into the polluted creek produced ill effects, the probable treatment for E coli poisoning would not necessarily have benefited much from the administration’s drug cost reduction plan. Common antibiotics used to treat E coli infections are typically priced $10 to $30 for a course of treatment. More
Illinois governor, JB Pritzker, has signed a first-in-the-nation executive order to block the federal government from collecting personal health data related to autism, a direct rebuke to the Trump administration.Pritzker, a Democrat who has been one of the more vocal critics of Donald Trump’s second administration, signed the order last week, saying he wanted to protect “dignity, privacy, and the freedom to live without fear of surveillance or discrimination”.It came two days after the US Health and Human Services secretary, Robert F Kennedy Jr, announced a plan to use data maintained by the National Institutes of Health, and claims submitted for Medicare and Medicaid coverage, to determine the causes of autism. While the agency did not release details of the plan, Kennedy promised it would follow “applicable privacy laws to protect Americans’ sensitive health information”.Prior to his rise to health secretary, Kennedy joined anti-vaccine advocates in claiming childhood vaccines are responsible for autism, but studies by the US Centers for Disease Control and Prevention and others have ruled that out.Pritzker’s executive order bans state agencies from disclosing “personally identifiable autism-related data” outside of state government unless the person or their guardian gives consent, it’s required by legal action, it’s necessary to provide services such as employment or housing or is otherwise required by law. State contractors, vendors and grant recipients are also covered.“We are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities,” Pritzker said.Andy Shih, chief science officer for Autism Speaks, a national advocacy group funding research and services, said he’s unaware of a similar declaration elsewhere. And while Kennedy promises to abide by privacy guidelines, Shih said with advances in computational power and algorithmic thinking, what’s private data today might not be tomorrow.Government investigators could use some techniques to get more information than what is previously disclosed. In the wrong hands, it could be used against patients to deny them constitutionally protected rights.“There’s always that concern,” Shih said. “Being proactive to protect privacy, which is something we value as a society, this should be applauded.”Kennedy has previously said he wants to be able to announce by September some of the causes of autism, a complex brain disorder better known as autism spectrum disorder because it affects people differently. For some people, profound autism means being nonverbal or having intellectual disabilities, while milder cases might mean difficulty with social and emotional skills.Experts say Kennedy’s planned database isn’t appropriate to uncover autism’s causes in part because there’s no information about genetics. However, Shih noted that the Department of Health and Human Services’s announcement was about creating a platform to help understand a range of chronic illnesses, which he said could be useful.Shih added that linking data sets is a proven way of studying issues of health. He pointed to a study published earlier this year in the Journal of the American Medical Association that found dementia in significantly higher numbers among autistic adults over age 65 than the general population. It was achieved by linking numerical identifiers from two different data sets. More
Donald Trump nominated Casey Means, a wellness influencer and medical doctor with an inactive license for US surgeon general this week – the president’s second nominee to serve as “the nation’s doctor”.Trump abruptly withdrew his first nominee, Dr Janette Nesheiwat, before her Senate confirmation hearing, amid criticism from the right and confusion about her medical credentials.His new nominee, Means, is a 37-year-old Los Angeles-based medical entrepreneur who shot to prominence in right-leaning wellness circles by criticizing mainstream medicine and advocating for a healthier food supply.In a social media post, Trump said that Means “has impeccable ‘Maha’ credentials”.Means’s nomination is a testament to the influence of health secretary Robert F Kennedy Jr in the administration. Just a day after Trump nominated Means, he told reporters: “I don’t know her. I listened to the recommendation of Bobby.”Kennedy is the figurehead of “Make America healthy again” (Maha), a loosely defined wellness movement embraced by the right alongside vaccine skepticism, new food politics and criticism of the medical establishment.Means’s brother, self-described former food lobbyist Calley Means, already works for the administration. He serves as a senior adviser to Kennedy and as one of the secretary’s leading online mudslingers.However, major hurdles remain for Means’s nomination – including her inactive medical license and criticism from the same rightwing forces that helped tank Trump’s first nominee.“We should not toss out the window everything Casey is saying, but I would proceed with caution given her training,” said Gabby Headrick, as assistant professor and director of nutrition programs at George Washington University’s Milken School of Public Health.“Typically and historically, the person appointed to that role and confirmed is someone who has an active medical license, someone who has completed residency, and has held a leadership role in a medical institution. Casey Means does not have the resumé … She also is not trained in nutrition.”Means also faces opposition from the far right. Activist Laura Loomer, who was critical of Trump’s first nominee, is skeptical of Means – calling her “unfit” for surgeon general and promoting events with Means’s critics.Loomer previously described Nesheiwat as “a pro-Covid vaccine nepo appointee who is currently embroiled in a medical malpractice case”. Covid vaccines and the technology that underpins them have become a target of right-leaning politicians.Similarly, anti-vaccine activists have sought to reassure the “medical freedom” base of Means’s bone fides. The anti-vaccine activist John Leake argued in a newsletter: “I have not seen any evidence that Casey Means is serving the vaccine cartel with her stated objective of scrutinizing the food supply.”Means describes herself as a “medical doctor, New York Times bestselling author, tech entrepreneur … aspiring regenerative gardener, and outdoor enthusiast who lives in a state of awe for the miracle and mystery of existence and consciousness”.She and her brother wrote a bestselling book called Good Energy: the Surprising Connection Between Metabolism and Limitless Health. The pair shot to fame on the political right around the time that Kennedy dropped out of the race and endorsed Trump. They began appearing at Maha events, on former Fox News host Tucker Carlson’s podcast, on The Joe Rogan Show and on HBO’s Real Time with Bill Maher.Casey Means’s public statements about how Americans should be wary about microplastics and agricultural chemicals and the importance of organic produce could easily serve as liberal dinner-party chatter. They also show how Maha has adopted concerns once considered the dominion of the left.“The thing that is so imperative for people to understand is that the reasons we’re having surgery, the reasons why we’re getting sick, the reasons American competitiveness is plummeting, the reasons why our kids are chronically ill … are all from preventable issues,” Means told Carlson.Means has adopted more inflammatory aspects of Kennedy’s agenda – including questioning the value of vaccines and criticizing Ozempic, the blockbuster GLP-1 drug.“I bet that one vaccine probably isn’t causing autism. But what about the 20 that they’re getting before 18 months?” she said on Rogan’s podcast.Nutrition experts such as Headrick have applauded Good Energy for its effort to elevate disease prevention. But Means ignores the “root causes” of chronic conditions, she says.“Not once in this book does Casey Means point out that millions of Americans do not have access to a full-service grocery store,” said Headrick.Means graduated from Stanford University in 2014 with a medical degree, and attended residency at Oregon Health & Science University the next year, but she left in 2018 before the five-year program finished. She said she left because she became disillusioned with medicine, while professors and former classmates said it was due to stress and anxiety, per the Los Angeles Times. Her medical license lapsed in 2024, according to the Oregon medical board.By 2019, she and a few others founded Levels, a business based around selling continuous glucose monitors and a subscription health tracking app. The devices, once available only to diabetics, have become popular in the “bio-hacking” movement. Such apps also collect reams of data on their customers, a valuable asset.“I am terrified about any company having this granular a look at my life and my medical information,” said Albert Fox Cahn, the executive director of the Surveillance Technology Oversight Project.“This should be someone committed to protecting [and] promoting public health, and I’m terrified to see this administration double down on its willingness to treat health as just another commodity.”One of her co-founders is Sam Corcos, who has become a key figure in the Elon Musk-led “department of government efficiency” inside the Internal Revenue Service. The unofficial department helped eliminate more than 280,000 federal workers, including nearly a quarter of the federal health workforce. The company’s backers have also included Trump advisers.Similarly, Calley Means has also invested in health technology. He co-founded TrueMed, a business that helps people purchase wellness devices – including Levels glucose monitors – through taxpayer-subsidized health savings accounts (HSAs) and flexible spending accounts (FSAs). About one in five Americans has access to an HSA, according to the American Bankers Association. Republicans have proposed expanding the accounts for decades.Although Means’s lack of a medical license would normally be disqualifying, health law experts said they would not rule out the administration attempting an end-run around the requirement.“A medical license requires that the individual maintains her medical knowledge through mandatory continuing medical education,” Gostin told NPR. “She is not licensed and therefore should be ineligible to become surgeon general of the United States.” More
