US health chief Kennedy launches autism project using Medicare and Medicaid data

WASHINGTON – Federal health agencies will create a database of autism patients enrolled in Medicare and Medicaid that researchers will use to study the causes of autism spectrum disorder, US Health Secretary Robert F. Kennedy Jr said on May 7.

The new platform will first focus on research around the root causes of autism, the Department of Health and Human Services (HHS) said, and, in the long term, link data for research on other chronic conditions.

“We’re pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear,” Mr Kennedy, who has long promoted a debunked link between vaccines and autism, said in a statement.

The National Institutes of Health (NIH) and the Centres for Medicare and Medicaid Services (CMS) will partner to build a real-world data platform enabling advanced research across claims data, electronic medical records and wearable health-monitoring devices, HHS said.

The project is part of a wider US$50 million (S$64.9 million) research effort Mr Kennedy is launching to identify the causes of autism, a neurological and developmental condition marked by disruptions in brain-signalling that cause people to behave, communicate, interact and learn in atypical ways.

Researchers would use the data platform to research autism diagnosis over time, health outcomes from medical and behavioural interventions, access to care and disparities by demographics and geography, as well as the economic burden on families and healthcare systems, HHS said.

These research areas “have absolutely nothing to do with identifying the root causes of autism”, said Dr Helen Tager-Flusberg, director of the Centre for Autism Research Excellence at Boston University.

In April, HHS denied it was creating a new autism registry following media reports that NIH director Jay Bhattacharya told staff the agency would create one.

On May 5, Mr Kennedy told Fox News there would be a registry, but that it would be voluntary and not include private information.

The project will comply with privacy laws, HHS said, but did not specify if the data will be anonymous or if participation is voluntary.

HHS, NIH, and CMS did not respond to requests for further comment on how the data would be used and on privacy concerns.

NIH already had a National Database for Autism Research that included the type of data needed to conduct research on the causes, Dr Tager-Flusberg said.

The database, comprising detailed research data collected by all NIH-funded research studies over 10 to 15 years, has not been available for several weeks now, she said, and scientists were not told why.

Researchers have already used Medicaid and Medicare claims data for a long time, said Assistant Professor Eric Rubenstein, an autism researcher at Boston University.

The data is ideal for studying health disparities and inequities, he said, but does not include the environmental exposures that Mr Kennedy seems interested in.

It also has gaps; it does not cover people with private or no insurance, and people frequently get on and off Medicaid.

What it does have is identifiable data points such as dates of birth, sex, and county, said Dr Tager-Flusberg, who leads the Coalition of Autism Scientists, a group formed in response to Mr Kennedy’s comments on the causes of autism.

Mr Kennedy in April said NIH would determine by September what causes autism, a question that has eluded scientists for decades.

A week later, he said that “some of the answers” would be available by then.

Rates of autism among US children reached a record level in 2022, with one in every 31 eight-year-olds affected, according to the Centres for Disease Control and Prevention.

Mr Kennedy, a former environmental lawyer, has suggested that environmental toxins are behind the rise and says he plans to look at everything from mould to medicine to identify the cause.

The causes of autism are unclear.

Experts say it likely results from a combination of genetic and environmental factors. Many attribute much of the rise in diagnoses to more-widespread screening and relatively recent inclusion of a broader range of behaviours to define the condition. REUTERS