Latest news with #ADDM
Express Tribune
08-05-2025
- Health
- Express Tribune
Kennedy unveils autism research plan using Medicare and Medicaid data
U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. discusses the findings of the Centers for Disease Control and Prevention's (CDC) latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey, during a press conference at the Department of Health and Human Services in Washington, D.C., U.S., April 16, 2025. REUTERS/Elizabeth Frantz Listen to article US federal health agencies will develop a national database of autism patients enrolled in Medicare and Medicaid, Health and Human Services (HHS) Secretary Robert F. Kennedy Jr said on Wednesday. The initiative is aimed at supporting research into the causes of autism spectrum disorder (ASD) and could later expand to include other chronic conditions, according to the department. Kennedy, who has publicly supported a discredited theory linking vaccines to autism, said the effort would bring "full transparency and accountability" and offer families long-awaited answers. The National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS) will collaborate on building the platform. It will aggregate real-world data from claims, electronic health records, and wearable devices, HHS said. The project is part of a broader $50 million research campaign to explore autism's origins—a neurological condition that affects communication, behaviour and learning. Researchers will be able to study autism diagnoses over time, treatment outcomes, access to care, health disparities, and the economic impact on families. But not all experts are convinced the new initiative will deliver on its central aim. 'These areas don't address the root causes of autism,' said Dr Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University. She noted that a similar NIH database had already existed for over a decade but had recently gone offline without explanation. Eric Rubenstein, another autism researcher at Boston University, said researchers have used Medicare and Medicaid data for years. It is helpful for studying disparities, he said, but lacks data on environmental exposures—an area Kennedy has pledged to examine. Kennedy said the new registry would be voluntary and would not collect private information. HHS stated the project would adhere to privacy laws but did not confirm whether data would be anonymised. NIH, HHS and CMS declined to provide further details on how the data would be used or managed. Kennedy has said the NIH will determine the causes of autism by September—a timeline most scientists view as unrealistic. Autism now affects 1 in 31 US children aged eight, according to the Centers for Disease Control and Prevention. Experts believe a mix of genetic and environmental factors likely contributes to the condition, alongside improved detection and diagnosis.
Straits Times
06-05-2025
- Health
- Straits Times
Kennedy aide and vaccine critic questions recent expert recommendations
FILE PHOTO: U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. discusses the findings of the Centers for Disease Control and Prevention's (CDC) latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey, during a press conference at the Department of Health and Human Services in Washington, D.C., U.S., April 16, 2025. REUTERS/Elizabeth Frantz/File Photo FILE PHOTO: Employees work in the manufacturing of Pfizer's new respiratory syncytial virus (RSV) vaccine Abrysvo, in this undated handout picture. Pfizer/Handout via REUTERS/ File Photo An aide to U.S. Health Secretary Robert F. Kennedy Jr. is seeking more information about three vaccines recommended by a panel of outside experts last month, according to documents reviewed by Reuters and two sources familiar with the situation. The advisory panel to the Centers for Disease Control and Prevention had made recommendations regarding the use of separate shots approved to help protect against RSV, meningitis and chikungunya. The CDC is not required to adopt their recommendations, but when it does, they become guidelines for medical practitioners to follow. Dr. William 'Reyn' Archer III joined the Health and Human Services Department, which oversees CDC, as a counselor in the secretary's office after Kennedy took over in February, HHS records show. A critic of vaccines on social media for the past several years, Archer served as Texas state health commissioner in the late 1990s. Archer's hiring and activity at HHS have not previously been reported. His role reviewing the Advisory Committee on Immunization Practices' recommendations is the latest indication of how Kennedy, who has spent decades raising doubts about the safety and efficacy of vaccines, is reshaping U.S. policy. HHS spokesman Andrew Nixon said the agency "will ensure that all recommendations adhere to the Gold Standard of Science." As part of his HHS role, Archer has in recent days posed questions to the CDC about the advisory committee recommendations, according to the documents and the two sources. One recommendation would expand eligibility for RSV vaccines made by Pfizer and GSK to high-risk adults aged 50-59 from a current threshold age of at least 60 years. In response, Archer asked for more justification of the expansion given what he described as a 'possible decline in efficacy with a second dose,' according to the documents and two sources. It is unclear what decline in efficacy data Archer is referring to. At the ACIP meeting, a GSK representative presented clinical trial results the company described as showing 'robust' immune responses following re-vaccination at 24 and 36 months. A GSK spokesperson said the data showed waning efficacy of a single dose over time, but not enough to justify revaccination yet. A Pfizer spokesperson did not immediately respond to requests for comment. ACIP also voted to recommend expanded use of GSK's vaccine for meningitis, and Archer questioned how providers administer it. In addition, ACIP recommended the use of a new chikungunya vaccine from Bavarian Nordic, which Archer has not disputed. However, Kennedy's aide asked for more information about a recommendation to expand the use of a vaccine for the mosquito-borne virus made by Valneva, the documents show. Archer also asked to know what adjuvants and platforms are being used for all the vaccines discussed at the ACIP meeting, and their length of immunity. FROM TEXAS TO WASHINGTON Kennedy is currently reviewing the latest ACIP recommendations in the absence of a CDC director, and it is unclear whether the HHS secretary will ultimately sign off on them. The decision will impact public health and major drug companies. Pfizer and GSK last month touted ACIP's vote to lower the age at which adults can be eligible for their respective RSV vaccines, decisions that affect whether insurers will likely pay for them. The FDA previously approved the age expansion. Kennedy says he is not opposed to vaccination, but described them as a personal choice in the midst of a large U.S. measles outbreak mostly among the unvaccinated. Kennedy argues that the nation's health bureaucracy should focus on chronic illness. Archer is a trained obstetrician who served in the early 1990s as a deputy assistant secretary of HHS under the administration of George H.W. Bush. At HHS, he helped implement a so-called gag rule restricting medical providers at federally-funded clinics from advising patients on abortion, according to court documents and media reports. He was appointed by then-Texas Governor George W. Bush to serve as commissioner of the state's Department of Health. He resigned in 2000 after a Black administrator in the department secretly recorded him making comments about her race, according to an Associated Press report at the time. Archer later served as chief of staff for Congressman Jeff Fortenberry of Nebraska from 2016 to 2022, according to his LinkedIn profile. Fortenberry, who opposed COVID-19 vaccine mandates during his tenure, was subsequently charged with lying to federal authorities about a campaign donation. The Justice Department dropped those charges after President Donald Trump took office in January. On his personal Facebook page, Archer posted repeatedly from 2020 to 2022 about the "limitations" of the COVID vaccine, Reuters found. In a deleted post on X, accessed with the Internet Archive, Archer said as Texas health commissioner he felt pressure to support vaccine mandates without "scientific counterfactual.' "My own son developed autism in early years then took his life at 16," he said in the post, which linked to a Trump campaign ad critical of the measles vaccine. Kennedy had long promoted a debunked link between vaccines and autism, contrary to scientific evidence, and last month promised a study to determine the cause of the condition. REUTERS Join ST's Telegram channel and get the latest breaking news delivered to you.
Medscape
05-05-2025
- Health
- Medscape
What Do We Know About the Causes of Autism?
The latest surveillance data from the US Centers for Disease Control and Prevention (CDC) show a steep rise in the prevalence of autism spectrum disorder (ASD), extending a years-long trend of increasing diagnoses. While greater awareness and improved diagnostic criteria have likely played a role, other potential contributing factors remain unclear and questions persist about what's truly driving this phenomenon. These new surveillance data came on the heels of an April 10 announcement by US Department of Health and Human Services (HHS) Secretary Robert F. Kennedy Jr, who set a September deadline to determine the cause of what he called an 'autism epidemic.' 'By September, we will know what has caused the autism epidemic and we'll be able to eliminate those exposures,' Kennedy said. However, many scientists who have spent their careers studying ASD are deeply skeptical that a definitive answer could be found in just a few months — if at all. What Do the Latest Data Show? The CDC regularly compiles data on ASD prevalence through the Autism and Developmental Disabilities Monitoring (ADDM) Network. The findings are considered to be among the most reliable snapshots of autism rates in children. The CDC's most recent data from the 2022 ADDM surveillance cycle are based on 393,353 8-year-olds across 16 US sites. The CDC report shows that ASD affects 1 in 31 children (32.2 per 1000), up from 1 in 36 in 2020 and 1 in 150 in 2000. ASD continues to be more common in boys than girls (ratio 3.4:1). ASD prevalence was higher among Asian/Pacific Islander, Black, and Hispanic children than White children, continuing a pattern first observed in 2020. Children born in 2018 were more likely to be diagnosed by age 48 months compared with those born in 2014, suggesting increased early identification consistent with historical patterns. Why Is ASD Prevalence Rising? The CDC's latest findings have prompted renewed scrutiny over why ASD prevalence continues to rise. CDC investigators noted several factors that may be driving the increase, including broader diagnostic criteria, greater awareness among parents and pediatricians, and improved access to specialized services. Together, these shifts mean children who may have been overlooked in previous decades are now being identified. Kennedy has long expressed concern about environmental toxins and their potential role in ASD. At an April 16 press conference, he claimed that such toxins disrupt neurodevelopment and are behind the rising caseload. He described autism as 'a preventable disease' and pledged to identify the environmental culprit by September. 'We're going to follow the science no matter what it says,' Kennedy said. 'And we will have some of the answers by September.' In a statement, the International Society for Autism Research said referring to the condition as a 'preventable disease' is 'out of touch with contemporary, evidence-based understanding of autism.' 'Based on current autism research, we know that there are many causes of autism, and virtually all of these occur prenatally,' the statement continued. 'In other words, you are born with autism.' What's Driving ASD: Genes, Environment, or Both? A robust body of evidence points to a substantial genetic component in ASD etiology. Studies of twins dating back to the 1970s have consistently shown that the vast majority of ASD is due to genetics, said Alexander Kolevzon, MD, clinical director of the Seaver Autism Center at Mount Sinai in New York City. 'With advances in genetic technology and analytic methods, hundreds of specific genetic changes have now been identified and are commonly accepted to cause autism. Yet the same twin studies show that if one identical twin has ASD, the other may not about 10% of the time, leaving room for some environmental influence,' Kolevzon told Medscape Medical News . 'Environmental effects may be acting through epigenetic mechanisms where certain factors, as of yet unidentified, influence the expression of genes. However, despite being an active area of study, no widespread environmental effects have been reliably established to date,' he added. When it comes to environmental contributors, a substantial amount of research has focused on exposures during the prenatal period — a critical window for neurodevelopment. For example, a 2019 JAMA Pediatrics population-based cohort study of 132,256 births showed that maternal exposure to nitric oxide during pregnancy was associated with increased risk for ASD in offspring. Investigators leading a 2022 study of 294,937 mother-child pairs found that exposure to particulate matter 2.5 in the first two gestational trimesters were associated with increased ASD risk in children. In addition, a 2022 study from France showed prenatal exposure to organophosphate pesticides was linked to an increase in autistic traits among 11-year-old children. Maternal metabolic conditions may also play a role. In April 2025, a meta-analysis of 202 studies including more than 56 million mother-child pairs showed that children born to mothers with gestational diabetes were 25% more likely to be diagnosed with autism. Researchers have also linked ASD risk to preterm birth and advanced parental age. It's thought that these exposures likely act as modifiers — influencing gene expression, immune activation, or neuronal development — rather than standalone causes. Gut-Brain Link? An emerging area of autism research involves the gut microbiome and whether gut dysbiosis contributes to ASD risk. 'There have been several studies showing that there is gut dysbiosis in autism, and that it correlates with autism symptoms,' Lisa Aziz-Zadeh, PhD, professor, Department of Psychology, University of Southern California, Los Angeles, told Medscape Medical News . 'However, we know that any behavioral differences must be via gut microbiome/metabolite interactions with the human nervous system,' she said. In an April 2025 study published in Nature Communications , Aziz-Zadeh's team was the first to identify links between gut microbial tryptophan metabolites, ASD symptoms, and brain activity in individuals with autism, particularly in brain regions associated with interoceptive processing. This points to a 'mechanistic model by which gut metabolites may impact autism,' she said. 'It's possible that addressing gut imbalances (via diet, probiotics, prebiotics, fecal transplants) may be helpful. However, we still don't know if there is a critical age where this may need to happen (prenatal, early life). There is still a lot of work to be done to answer this question,' she said. In another recent study, microbiota transfer therapy led to significant improvements in gastrointestinal (GI) symptoms, autism-related symptoms, and gut microbiota in children with ASD. The effects of the initial treatment on both gut microbiota and GI symptoms were maintained at the 2-year follow-up, with continued improvement in autism-like behaviors, the researchers reported. A Realistic Deadline? When Kennedy declared a September deadline for identifying the cause of autism, reaction was swift. Advocacy organizations, professional societies, and many research scientists expressed skepticism regarding the feasibility of such a deadline, noting that complexity argues against finding a single cause. 'The odds of identifying a single factor that causes autism, whether genetic or environmental, is zero,' said Kolevzon. The 5-month timeline Kennedy set 'gives people a false sense of hope' and risks politicizing science, the Autism Society of America said in a statement. 'The Autism Society of America finds the administration's claim that 'we will know what has caused the Autism epidemic and we'll be able to eliminate those exposures' — to be harmful, misleading, and unrealistic.' Aziz-Zadeh said that 60%-90% of the causes of autism are likely due to genetic factors. 'However, since that number isn't 100%, there are also contributing environmental factors — what those might be, we still don't know — and likely there isn't a single one,' he said. In a letter signed by more than 130 scientists, the newly formed Coalition of Autism Scientists rejected Kennedy's 'false narrative' about the incidence and causes of ASD. 'We are unified in our commitment to conduct the highest quality research and build mutual respect and trust with the public. This trust is seriously threatened by the Secretary's interpretation of the rising prevalence rates and his plans to carry out a study that will deliver findings within a few months on an environmental toxin that causes autism,' the statement said. An ASD Registry? Equally concerning to many in the autism community was a recent announcement from the National Institutes of Health (NIH) about plans to establish a 'new disease registry' focused on ASD that would collect federal and private health data for upcoming autism studies. NIH Director Jay Bhattacharya, MD, PhD, made the announcement during a presentation to the Council of Councils on April 21. However, HHS walked back that plan 3 days later, following an outcry from the autism community. HHS spokeswoman Vianca N. Rodriguez Feliciano told Medscape Medical News that the agency is not creating an autism registry but is developing a 'real-world data platform' linking existing datasets 'that maintains the highest standards of security and patient privacy while supporting research into autism and other areas such as chronic diseases.' NIH is also investing $50 million to launch a comprehensive research effort aimed at understanding the causes of ASD and improving treatments by leveraging large-scale data resources and fostering cross-sector collaboration, Feliciano added. Feliciano did not respond to follow-up questions from Medscape Medical News to clarify whether the data platform would include patient identifying information or such data sources as pharmacies, private insurers, and personal wearable sensors, as noted by Bhattacharya during his presentation. Autism Speaks, an advocacy group, said that research should not focus solely on the causes of autism. 'We also need to invest in studies that lead to real improvements in people's lives — like better healthcare, education, job opportunities, and support at every stage of life for autistic people and their families,' the group said in a statement.
Express Tribune
23-04-2025
- Health
- Express Tribune
RFK Jr autism probe prompts NIH to collect Americans' private medical data
U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. discusses the findings of the Centers for Disease Control and Prevention's (CDC) latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey, during a press conference at the Department of Health and Human Services in Washington, D.C., U.S., April 16, 2025. REUTERS/Elizabeth Frantz Listen to article The US National Institutes of Health (NIH) is compiling private medical records from federal and commercial databases to support a new autism research initiative led by health secretary Robert F. Kennedy Jr., officials said this week. The effort forms part of Kennedy's push to identify the cause of autism by September, a deadline widely questioned by medical experts. According to NIH director Jay Bhattacharya, the initiative aims to create a centralised research platform for autism and chronic disease studies using data from a broad cross-section of americans. "The idea of the platform is that existing data resources are often fragmented and difficult to obtain," Bhattacharya said in a presentation to advisers. "This aims to bring them together in one secure, accessible place." Data sources for the project include pharmacy records, genomics data from the department of veterans affairs, claims from private insurers, and information from fitness trackers. Bhattacharya said the agency is also in talks to expand access to data from the centers for medicare and medicaid services (CMS). Between 10 and 20 outside research teams will be selected to study the data under federal grants, according to CBS news, which first reported the story. Kennedy, who described the rise in autism diagnoses as an 'epidemic' linked to 'environmental toxins', announced the project earlier this month. His claims have drawn criticism from health professionals who say there is no evidence supporting that theory. "If you just ask me, as a scientist, is it possible to get the answer that quickly? I don't see any possible way," said Dr. Peter marks of the food and drug administration, speaking to CBS. Bhattacharya acknowledged the project will remain an "evolving process," but said early insights were expected by the September deadline. The NIH has not disclosed how personal privacy concerns will be addressed, but said the platform will comply with federal data protection standards. Earlier this month, US Health Secretary drawn sharp criticism from leading autism researchers after calling autism a 'preventable' condition and attributing its rising prevalence to environmental factors. Speaking at a press conference, Kennedy rejected the idea that improved screening or genetics account for the increase in autism diagnoses, contradicting both the CDC and experts within his own department. 'Genes don't cause epidemics,' he said. 'You need an environmental toxin.' The remarks followed a new CDC report showing that 1 in 31 American eight-year-olds has been diagnosed with autism, up from 1 in 36 in 2020. Researchers largely credit expanded screening, broader diagnostic criteria, and increased awareness for the upward trend. Autism is not a disease but a neurodevelopmental condition influenced by multiple factors, including genetics. Scientists have long warned against oversimplifying its causes. 'There is a clear genetic contribution. That is not in question,' said Dr. Catherine Lord, a psychologist and autism researcher at UCLA. Kennedy said his department would prioritise studies into toxins introduced around 1989, a year he claims marks the beginning of the autism 'epidemic.' He pledged to deliver preliminary answers by September and invite the research community to join the effort. But experts expressed concern that Kennedy's approach could misdirect public funds and stigmatise affected families. 'We are being set up to look in the wrong place,' said Dr. David Mandell, a psychiatry professor at the University of Pennsylvania. While Kennedy did not mention vaccines, he has previously promoted a debunked link between childhood vaccinations and autism. Dozens of studies have found no such connection. Autism researchers cautioned that Kennedy's focus on toxins and dismissal of genetic science could undermine more productive avenues of research and delay support services for children already diagnosed.
Yahoo
17-04-2025
- Health
- Yahoo
Parents react to RFK Jr.'s child autism press conference: ‘When there is ignorance, that breeds fear'
Parents of autistic children are speaking out following Robert F. Kennedy Jr's press conference Wednesday, where he discussed the findings of a new Centers for Disease Control and Prevention report on the increased rates of autism diagnoses in the U.S. The CDC's Autism and Developmental Disabilities Monitoring (ADDM) report, published on April 15, found that in 2022, one in 31 U.S. children were diagnosed with autism spectrum disorder, representing an increase from the previous 2010 estimate of one in every 36 children. Kennedy, the secretary of the Department of Health and Human Services, said the CDC's findings showed, 'the autism epidemic has now reached a scale unprecedented in human history.' The CDC has been collecting data on autism in children since 2000, when it was initially reported that one out of every 150 children was on the autism spectrum. Since then, the CDC has increased the number of ADDM sites analyzing children and researchers have suggested that an increased awareness of how autism presents in children has likely contributed to the rise in diagnoses, among other factors. The specific guidelines used to make an autism diagnosis have also expanded significantly over the last two decades. But Kennedy rejected the idea that the steady rise in diagnoses has been driven by increased access to autism screenings, while criticizing research that has focused on the genetic factors that, scientists say, contribute to the development of autism. Rather, he described the neurological disorder as 'preventable' and likened the rise in diagnoses to the spread of an infectious disease. He discussed plans for studies focused on environmental toxins that, he believes, may be responsible for increased rates of the condition, promising to have 'some of the answers' by September. "Autism destroys families, and more importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this," Kennedy said. "These are kids who will never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted." This characterization quickly prompted backlash from parents of autistic children, many of whom took to social media to condemn Kennedy's comments. 'My 27-year-old son with autism didn't 'destroy our family' — he gave us purpose and unity,' actress and activist Holly Robinson Peete posted on X. 'Oh, and he pays taxes.' 'This [is] my son. He has autism,' Trevor McCue, a sports writer and father, wrote on X, and also posted a video of his son playing the piano. 'There's challenges, but he's the best thing [in] my life. There's nothing wrong with him.' Eric Garcia, a reporter for the Independent who was at Kennedy's press conference and was diagnosed with autism around 1994, told Yahoo News that he worried Kennedy's framing of autism as an 'epidemic' could negatively influence the public's perception of it, creating more fear than understanding. 'Autism should be classified as a disability, not an illness,' Garcia said. 'Autism is not good or bad, it's a way of being.' Autism is considered a spectrum. The National Autistic Society explains that this doesn't mean it's a 'straight line between 'more' and 'less' autistic' but 'each autistic person has a unique combination of characteristics … with different sets of strengths and challenges.' 'It's a horrible message to all,' Garcia said about Kennedy's speech, 'not only to autistic people, but to all of the parents who love and cherish and value their children and don't see their children as a tragedy. This shouldn't be a moment of fear. This should be a moment of action.' Not all parents had the same reaction to Kennedy's speech, however. Some took to social media to express their concerns over autism in their family and the lack of concrete understanding surrounding the disability. 'For my daughter, autism is not a super power,' Substack writer Emily May wrote on X. 'It makes her life very difficult. She struggles to communicate her needs, it's hard for her to participate in things with other children. … 'Autism isn't a disease' okay well for my child it is as debilitating as one.' 'My daughter changed significantly at 20 months old. She stopped making eye contact, stopped answering to her name, stopped noticing her environment. Lost the few words she had,' May's post continued. 'The medical community doesn't have a good answer for why regressive autism happens.' Jennifer Cook, an author and on-camera expert for the Netflix show Love on the Spectrum, told Yahoo News she was not surprised that, for some parents of autistic children, Kennedy's comments may have tapped into their own questions and fears about their child's diagnosis. Cook and all three of her children were diagnosed with Asperger's syndrome, considered part of the broader autism spectrum disorder, in 2011. 'Autism may look different in each person,' Cook said. ''Different' is not 'abnormal' and 'typical' and 'normal' are not synonyms. And I think what we, as parents, wish for is for our children to have what we have and better. And I understand that when something looks very different, that can be scary.' Still, Cook says she takes issue with Kennedy's negative characterization of the impact an autism diagnosis can have on a child and their family, noting that 'Kennedy is not bringing any autistic stakeholders into the conversation.' 'When there is ignorance, that breeds fear,' she said.
