Experts call Kennedy's plan to find autism's cause unrealistic
WASHINGTON (AP) — For many experts, Health Secretary Robert F. Kennedy Jr. 's promise for 'pulling back the curtain' to find autism's causes in a few months is jarring — and unrealistic.
That's because it appears to ignore decades of science linking about 200 genes that play a role — and the quest to understand differences inside the brain that can be present at birth.
'Virtually all the evidence in the field suggests whatever the causes of autism — and there's going to be multiple causes, it's not going to be a single cause — they all affect how the fetal brain develops,' said longtime autism researcher David Amaral of the UC Davis MIND Institute.
'Even though we may not see the behaviors associated with autism until a child is 2 or 3 years old, the biological changes have already taken place,' he said.
Kennedy on Wednesday announced the National Institutes of Health would create a new database 'to uncover the root causes of autism and other chronic diseases' by merging Medicaid and Medicare insurance claims with electronic medical records and other data. He has cited rising autism rates as evidence of an epidemic of a 'preventable disease' caused by some sort of environmental exposure and has promised 'some of the answers by September.'
What is autism?
Autism isn't considered a disease. It's a complex brain disorder better known as autism spectrum disorder, to reflect that it affects different people in different ways.
Symptoms vary widely. For some people, profound autism means being nonverbal and having significant intellectual disabilities. Others have far milder effects, such as difficulty with social and emotional skills.
Autism rates are rising — not among profound cases but milder ones, said autism expert Helen Tager-Flusberg of Boston University.
That's because doctors gradually learned that milder symptoms were part of autism's spectrum, leading to changes in the late 1990s and early 2000s in diagnosis guidelines and qualifications for educational services, she said.
What's the state of autism research?
The link between genes and autism dates back to studies of twins decades ago. Some are rare genetic variants passed from parent to child, even if the parent shows no signs of autism.
But that's not the only kind. As the brain develops, rapidly dividing cells make mistakes that can lead to mutations in only one type of cell or one part of the brain, Amaral explained.
Noninvasive testing can spot differences in brain activity patterns in babies who won't be diagnosed with autism until far later, when symptoms become apparent, he said.
Those kinds of changes stem from alterations in brain structure or its neural circuitry — and understanding them requires studying brain tissue that's available only after death, said Amaral, who's the scientific director of a brain banking collaborative called Autism BrainNet. The bank, funded by the nonprofit Simons Foundation, has collected more than 400 donated brains, about half from people with autism and the rest for comparison.
What about environmental effects?
Researchers have identified other factors that can interact with genetic vulnerability to increase the risk of autism. They include the age of a child's father, whether the mother had certain health problems during pregnancy including diabetes, use of certain medications during pregnancy, and preterm birth.
Any concern that measles vaccinations could be linked to autism has been long debunked, stressed Tager-Flusberg, who leads a new Coalition of Autism Scientists pushing back on administration misstatements about the condition.
What about Kennedy's database plan?
The U.S., with its fragmented health care system, will never have the kind of detailed medical tracking available in countries like Denmark and Norway — places with national health systems where research shows similar rises in autism diagnoses and no environmental smoking gun.
Experts say Kennedy's planned database isn't appropriate to uncover autism's causes in part because there's no information about genetics.
But researchers have long used insurance claims and similar data to study other important questions, such as access to autism services. And the NIH described the upcoming database as useful for studies focusing on access to care, treatment effectiveness and other trends.
___
The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Science and Educational Media Group and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
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- Chicago Tribune
Letters: Government's reversal on COVID-19 shots for pregnant women is alarming
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Not recommending this vaccine jeopardizes insurance coverage of the vaccine and clinicians' ability to gain the trust of pregnant women for vaccines at a time when they are at risk for adverse outcomes. How can we expect pregnant women to trust clinicians if we recommend vaccines that they may not be allowed to access? Are we to advise patients to disregard CDC recommendations? How do we train future researchers and clinicians if epidemiologic data is ignored? We need to listen to research and learn from data. Barring pregnant women from accessing the COVID-19 vaccine is not clinically sound and will negate our collective efforts to improve maternal health in Illinois and nationally. This will have a chilling effect on efforts to investigate and address causes of maternal morbidity and Father's Day here, I am once again reminded of the father I was blessed with. My mom and dad had five girls. Sadly, their first baby was stillborn, and at the ages of 19 and 26, my parents had to bury their little girl, marking her grave with a small headstone for little 'Linda Jean.' They then had four more girls — I was the second of the four, born in 1950. My dad was a mail carrier all of his working days and oftentimes found it hard to make ends meet. We didn't have the best of everything, but we had all we needed — most importantly, his devotion, his time and his unending love. As kids, we didn't realize that times were so tough. The one story that I remember most vividly was when Dad drove me to my piano lesson. At the time, the lesson was $2 for 45 minutes. I happened to look over when he was getting the $2 out of his wallet one week and saw him pull it out — all folded up in a neat little square in the corner of his wallet. The rest of his wallet was empty. You see, Dad got paid only every other week. It was many years later that I realized on the off days of the month, his wallet was empty — except for the $2 that he had set aside so I could take piano lessons. How blessed I was!I started teaching in 1975 and walked away from the classroom this year. After 36 years of teaching high school and 25 years as a college adjunct, I have some unsolicited observations and advice for the fathers out there. In all my 50 years involved with teenagers, I have never met a messed-up kid who had a good relationship with his or her father. Granted, I have met some problem children with wonderful moms, but then I met the dads, and the source of the kid's anger and unhappiness became clear. I also should point out that not all of the kids who had terrible fathers had difficulties, but those kids with bad fathers who turned out OK usually had a positive father figure there for them — a grandfather, an uncle, an older sibling, a stepdad. 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Be there for looking at the footage of President Donald Trump recently speaking to the German chancellor regarding D-Day, nothing these last few months surprises me except the behaviors coming from the White House. I am the proud daughter of my late dad, who was a bombardier with the 8th Army Air Corps who flew 35 missions over Germany in a B-17 bomber. My late father-in-law fought at the Battle of the Bulge in late 1944, my late uncle was wounded at the Battle of Iwo Jima in 1945, and my husband's great uncle was a sailor whose warship was sunk by the Japanese in 1942 and whose headstone may be found in Manila. My friend's father-in-law was the groom in a wartime wedding in which my mom was the maid of honor. This man was an Army paratrooper who was later killed on Omaha Beach and never met his child. The point is that these brave men fought and many died in defense of our nation and the world. The president spoke as if a war between nations was similar to a fight between brawling children. For all of those involved, the remembrance of D-Day was not a great what I needed, a huge belly laugh while reading the Tuesday Tribune article ('Judge denies Madigan's motion for new trial') about former Illinois House Speaker Michael Madigan's approaching sentencing. Through his defense attorneys, he stated that he amassed a personal fortune of $40 million by choosing 'frugality over extravagance, remaining in the same modest home for more than fifty years while making prudent savings and investment choices.' Hey, that's the same lifestyle my husband and I have chosen over our 38-year marriage! Living that lifestyle has not brought our personal fortune anywhere near $40 million. Maybe Madigan can busy himself during his retirement teaching all of the hardworking, frugal, living-below-their-means folks his personal tricks to growing our income to be multimillionaires. Let us in on the little secrets of the good old politician's club for growing your own personal Pope Leo XIV in that White Sox cap leads me to believe that someday he'll replace St. Jude as the patron saint of lost causes.
7 hours ago
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San Francisco Chronicle
7 hours ago
- San Francisco Chronicle
Medicaid enrollees fear losing health coverage if Congress enacts work requirements
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For proponents, the ideas behind the work requirement are simple: Crack down on fraud and stand on the principle that taxpayer-provided health coverage isn't for those who can work but aren't. The measure includes exceptions for those who are under 19 or over 64, those with disabilities, pregnant women, main caregivers for young children, people recently released from prisons or jails — or during certain emergencies. It would apply only to adults who receive Medicaid through expansions that 40 states chose to undertake as part of the 2010 health insurance overhaul. Many details of how the changes would work would be developed later, leaving several unknowns and causing anxiety among recipients who worry that their illnesses might not be enough to exempt them. 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The bill the House adopted would require Medicaid enrollees to show that they work, volunteer or go to school at least 80 hours a month to continue to qualify. A disability exception would likely apply to Furman's son, who previously worked in an eyeglasses plant in Illinois for 15 years despite behavioral issues that may have gotten him fired elsewhere. Furman said government bureaucracies are already impossible for his son to navigate, even with help. It took him a year to help get his son onto Arizona's Medicaid system when they moved to Scottsdale in 2022, and it took time to set up food benefits. But he and his wife, who are retired, say they don't have the means to support his son fully. 'Should I expect the government to take care of him?' he asked. 'I don't know, but I do expect them to have humanity.' There's broad reliance on Medicaid for health coverage About 71 million adults are enrolled in Medicaid now. 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Amber Bellazaire, a policy analyst at the Michigan League for Public Policy, said the process to verify that Medicaid enrollees meet the work requirements could be a key reason people would be denied or lose eligibility. 'Massive coverage losses just due to an administrative burden rather than ineligibility is a significant concern,' she said. One KFF poll respondent, Virginia Bell, a retiree in Starkville, Mississippi, said she's seen sick family members struggle to get onto Medicaid, including one who died recently without coverage. She said she doesn't mind a work requirement for those who are able — but worries about how that would be sorted out. 'It's kind of hard to determine who needs it and who doesn't need it,' she said. Some people don't if they might lose coverage with a work requirement Lexy Mealing, 54 of Westbury, New York, who was first diagnosed with breast cancer in 2021 and underwent a double mastectomy and reconstruction surgeries, said she fears she may lose the medical benefits she has come to rely on, though people with 'serious or complex' medical conditions could be granted exceptions. She now works about 15 hours a week in 'gig' jobs but isn't sure she can work more as she deals with the physical and mental toll of the cancer. Mealing, who used to work as a medical receptionist in a pediatric neurosurgeon's office before her diagnosis and now volunteers for the American Cancer Society, went on Medicaid after going on short-term disability. 'I can't even imagine going through treatments right now and surgeries and the uncertainty of just not being able to work and not have health insurance,' she said. Felix White, who has Type I diabetes, first qualified for Medicaid after losing his job as a computer programmer several years ago. The Oreland, Pennsylvania, man has been looking for a job, but finds that at 61, it's hard to land one. Medicaid, meanwhile, pays for a continuous glucose monitor and insulin and funded foot surgeries last year, including one that kept him in the hospital for 12 days. 'There's no way I could have afforded that,' he said. 'I would have lost my foot and probably died.'
