US Health department will analyze data from autistic Medicare, Medicaid
enrollees, RFK Jr. says
[May 08, 2025]
By AMANDA SEITZ
WASHINGTON (AP) — Health Secretary Robert F. Kennedy Jr. announced a
plan Wednesday to use medical data and records from people on Medicaid
and Medicare to help study autism although experts say it's unlikely to
help reveal the condition's root causes.
The program will involve a data sharing agreement between the National
Institutes of Health, the government’s health research arm, and the
Centers for Medicare and Medicaid Services, which has access to claims
data from nearly 150 million Americans across the country.
“We’re using this partnership to uncover the root causes of autism and
other chronic diseases,” Kennedy said in a statement.
The agreement will be “consistent with applicable privacy laws to
protect Americans’ sensitive health information,” the HHS statement
said. The health department did not respond to additional questions
about the program.
Using the data, the agency said researchers will focus on autism
diagnosis trends, health outcomes from medical or behavioral treatment,
access to care based on demographics and geography as well the economic
burden of autism on families and health care systems.
The problem is that this isn’t the kind of data needed to answer
questions about autism’s causes, said Helen Tager-Flusberg, professor
emerita at Boston University who leads a new Coalition of Autism
Scientists pushing back on Kennedy’s characterizations of the condition.
“Enough research has been done at this point to know there is no simple
magic bullet,” she said, cautioning that this type of dataset won't help
with the type of research most needed — into genetics and other
prenatal, preconception and early infancy factors.
Kennedy has directed the health department to undertake a far-reaching
research effort to identify the causes of autism, a complex disorder
that impacts the brain. Announcing his plans last month, Kennedy said he
plans to provide answers as to what causes autism by September. He has
since said the department will determine at least “some” of the causes.
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Health and Human Services Secretary Robert F. Kennedy Jr. speaks
during an event with President Donald Trump to sign executive orders
and proclamations in the Oval Office of the White House, Monday, May
5, 2025, in Washington. (AP Photo/Alex Brandon)
 His research directive comes as
autism rates in the U.S. are rising, with the Centers for Disease
Control and Prevention releasing a report that an estimated 1 in 31
U.S. children have autism, a marked increase from 2020. Scientists
and researchers who study autism have said that increase in
diagnoses is the result of increased awareness about the disorder,
especially among people who exhibit milder symptoms of autism.
Kennedy has rejected that explanation in public
appearances, instead describing autism as a “preventable disease”
that is caused by environmental factors.
Autism is not considered a disease but a complex brain disorder.
Those who have spent decades researching autism have found no single
cause, although genetic factors are associated with it. In addition
to genetics, scientists have identified various possible factors,
including the age of a child’s father, the mother’s weight and
whether she had diabetes or was exposed to certain chemicals.
Kennedy's comments have sparked alarm among autism researchers and
advocates, who fear he will use the study to support a discredited
theory that vaccines cause autism. Kennedy, a longtime vaccine
critic, has pushed that theory before, although decades of research
has found no link between vaccines and autism. President Donald
Trump has also suggested that vaccines could be to blame for autism
rates.
The new platform that HHS plans to launch around autism will be a
“pilot," that will be used to study chronic conditions and
treatments, the agency said.
—
Associated Press writer Lauran Neergaard contributed reporting.
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