RFK Jr. reveals autism project with Medicare, Medicaid data

Secretary of Health and Human Services Robert F. Kennedy Jr. announced on Wednesday that two major federal agencies within the department would build a data system to research autism spectrum disorder. Kennedy said the National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services would collaborate to “link real-world data” in a way that would be consistent with privacy laws to research “chronic conditions.”

“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy said in a statement on Wednesday. “We’re pulling back the curtain — with full transparency and accountability — to deliver the honest answers families have waited far too long to hear.” Kennedy had earlier vowed to determine the cause of autism by September, even though researchers have studied it since the 1920s with no clearcut answers. His announcement came weeks after NIH Director Jay Bhattacharya said that the agency planned to gather private medical records from federal and commercial databases to research. That alarmed some autistic self-advocates, their loved ones and their allies, who feared it could violate autistic people’s privacy or lead to the creation of an autism “registry” that could be used to discriminate against them or mandate medical testing and treatment.

The department later said that it would not create an “autism registry.” But it’s unclear exactly what information Kennedy’s data system would contain, how it could be accessed, and who could access it — or if it’s even possible for exposure of private medical information to be compatible with legally mandated privacy protections. “This partnership is an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives,” Bhattacharya said in the Wednesday announcement. “Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease — ultimately delivering superior health outcomes to the Americans we serve,” he added.

HHS said in a statement that the Centers for Medicare and Medicaid Services, which is led by former physician and television host Mehmet Oz, and the NIH will establish a data use agreement under CMS’s Research Data Disclosure Program focused on Medicare and Medicaid recipients who have autism spectrum disorder. According to a 2023 JAMA Psychiatry study, 403,028 adults over nine years had autism claims, and 71.6 percent of them were continuously enrolled in Medicaid. Medicare is the US government program that serves elderly Americans, while Medicaid serves low-income people, children, pregnant women, people with disabilities, and nursing home costs for the elderly.

Kennedy, who has long promoted the conspiracy theory that childhood vaccinations cause autism, said last month that he would lead an effort to “know what has caused the autism epidemic” by September. Last month, when the Centers for Disease Control and Prevention released its biennial report showing that the number of children diagnosed with autism spectrum disorder increased from 1 in 36 children to 1 in 31 children, Kennedy said it was evidence for his claims. But the CDC’s experts attributed the increase to improved diagnostics along racial and socioeconomic lines. Several medical studies have found no link between vaccines and autism.

Kennedy also received widespread criticism for his remarks saying that autism “destroys families” and children, saying that autistic children will “will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem” or go on a date. In fact countless people with autism lead normal or near-normal lives. The new announcement said that the program is just the latest focus by the Trump administration in searching for the supposed root causes of autism. Trump has also suggested that vaccinations lead to autism spectrum disorder.

“Using ASD as the pilot research program, teams at CMS and NIH will establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange,” the statement released on Monday said. The department added that the program would help study health care utilisation, the origins of chronic diseases, treatment and the “economic burden” of chronic conditions.