by Suzanne Burdick, Ph.D. at the Defender
NIH and the Centers for Medicare & Medicaid Services today announced a “landmark partnership” that will allow NIH autism researchers to analyze the health records of children and adults enrolled in Medicare or Medicaid who have an autism diagnosis.
National Institutes of Health (NIH) researchers looking to uncover the root causes of autism will now have access to Medicaid and Medicare records, thanks to a data-sharing initiative announced today.
NIH and the Centers for Medicare & Medicaid Services (CMS) said in a press release that their “landmark partnership” will link CMS claims to an NIH data platform. This will allow NIH autism researchers to analyze the health records of children and adults enrolled in Medicare or Medicaid who have a diagnosis of autism spectrum disorder (ASD).
Last month, U.S. Secretary of Health and Human Services (HHS) Robert F. Kennedy Jr. announced a “massive testing and research effort” to determine what causes autism. The NIH said it was launching the autism research program.
In March, the Centers for Disease Control and Prevention (CDC) confirmed it plans to study the possible link between vaccines and autism.
The NIH and CDC operate under HHS.
NIH Director Jay Bhattacharya said today in the press release:
“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.”
Medicaid and Medicare are federal programs that cover medical costs for some children and adults, depending on income, age and certain conditions.
Children accounted for nearly half (47.5%) of the over 78 million people enrolled in Medicaid or Medicaid’s related Children’s Health Insurance Program (CHIP), as of December 2024.
Medicare generally covers people age 65 and older. As of April 2024, roughly 67.3 million people were enrolled.
NIH researchers will analyze the claims to determine:
- Autism diagnosis trends over time.
- The results of medical and behavioral interventions for autism.
- Trends in people’s access to care, including demographic and geographic differences.
- Autism’s economic burden on families and healthcare systems.
The NIH emphasized that its ASD study using CMS data is a pilot research program, meaning it’s something the agency hasn’t done before.
Need for ‘real-world data insights has never been more urgent’
The technological requirements to look at claim data and ASD diagnoses have existed for decades, according to Karl Jablonowski, Ph.D., senior research scientist for Children’s Health Defense.
“What has been lacking,” he said, “while the autism epidemic has increased exponentially, was the courage to look.”
Jablonowski added:
“A serious look into autism may reveal a link to the high levels of toxins (such as aluminum) in vaccines and other pharmaceutical products, as well as processed food and beverage products. Vaccinology was a forbidden science, and there was a $69 billion-a-year industry that tried to keep it that way.”
The NIH said in its press release:
“With ASD prevalence now affecting 1 in 31 children in the United States, and with more than 25% of those individuals experiencing profound or severe autism, the need for multi-source, real-world data insights has never been more urgent.”
CMS partnership a step toward building NIH’s huge data platform
The NIH’s data-sharing deal with CMS is the latest development in the agency’s goal to create a huge data platform for its autism research. The platform will ultimately include data from electronic medical records and consumer wearables, according to the NIH’s press release.
The platform — once fully developed — will also likely include public and private health records, including data from pharmacy chains, lab testing and genomics data from patients treated by the U.S. Department of Veterans Affairs and Indian Health Service, private insurance claims, and fitness tracking apps and smartwatches, according to a presentation Bhattacharya gave at an April 21 meeting of NIH advisers.
“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain,” Bhattacharya said. “The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain.”
In a March interview, Kennedy said various sub-agencies of HHS withhold health data or sell it to each other. Kennedy said that when he requested data from CMS, an HHS agency, he was told HHS would have to purchase it.
The NIH did not immediately respond when The Defender asked if NIH paid CMS as part of its new data-sharing partnership.
RFK Jr.: ‘We’re pulling back the curtain’
Kennedy said in a statement that the NIH partnership with CMS will help “uncover the root causes of autism and other chronic diseases.”
“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 added.
Trial Site News called the data-sharing deal with CMS “bold” but said that it was unclear how the partnership would uncover autism’s root causes.
According to Trial Site News, the press release about the deal spelled out “lofty goals” while providing “sparse detail.”
Important questions are still unanswered, such as whether the NIH data platform will include prenatal, early life or environmental exposure data. Such data is likely needed to accurately pinpoint the drivers of autism. “Claims data alone may fall short,” Trial Site News warned.
Jablonowski said he thought it was appropriate to give the NIH some “slack” by not immediately “demanding too much detail” for an exploratory project like its autism study.
“As with the first telescope and the first microscope,” Jablonowski said, “so too with the first serious unencumbered look at nationwide autism in the context of medical records and real-world data. You don’t know what you are going to find until you find it.”
The Defender asked CMS to comment on its data-sharing partnership with NIH but did not receive a response by the deadline.
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