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SPRINGFIELD, IL — Illinois Gov. JB Pritzker has signed an executive order restricting state agencies from collecting and sharing autism-related data, in response to federal efforts to create a database for autism research.
The order, signed by Pritzker on May 7, came after Health and Human Services Secretary Robert F. Kennedy Jr. announced a plan to use Medicare and Medicaid data to help study autism. Kennedy has prioritized autism as part of his Make America Healthy Again movement, which focuses on ending what he calls the “chronic disease epidemic.”
The health secretary, who has long promoted anti-vaccine views and shared debunked claims that vaccines cause autism, said in April during a cabinet meeting of President Donald Trump that the government will know the cause of the “autism epidemic” by September.
Kennedy’s rhetoric on autism has sparked outrage from much of the autism community and medical experts. Colin Killick, executive director of the Autistic Self Advocacy Network, previously told Reuters that the health secretary has a history of promoting falsehoods on autism.
Autism is not considered a disease. It is a neurological and developmental disorder, which is also known as autism spectrum disorder, and is diagnosed based on challenges with social skills, communication, and repetitive behaviors.
Pritzker’s order aims to protect individuals from unauthorized data collection and “ensures that autism-related information is handled only when necessary and with informed consent,” according to a news release from the governor’s office.
“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” Pritzker, a Democrat and critic of the Trump administration, said in a statement. “As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.”
What does Pritzker’s order specifically do?
“All agencies under the Governor’s control (which includes any agency, department, office, officer, division, bureau, board, or commission in the executive branch of state government under the Governor’s jurisdiction) shall work to ensure they are not collecting, or using data scraping technology to gather, autism-related data,” the order states, unless that collection fully complies with the Health Insurance Portability and Accountability Act and the MHDDCA.
To be collected, the data must also be “strictly necessary” for multiple reasons listed, according to the order.
Additionally, the order says that no state agency will disclose personally identifiable information that is maintained by a state agency to any entity outside the State of Illinois government, unless:
- The individual or legal guardian provides informed, written consent for a specific use
- It’s required by court order or subpoena from a court of competent jurisdiction
- It’s required to provide educational, medical, employment, housing, or other essential services and supports to an autistic individual
- It’s required to comply with established Illinois or federal law
“All disclosures must be limited to the minimum amount of information necessary to meet the legal requirement, and should be anonymized where allowed and practicable,” the order says.
Local response to Pritzker’s executive order
Groups that work with and support people with autism have expressed support for Pritzker’s measure. Hope, based in Springfield, offers a range of services and programs for people with autism and other developmental disabilities.
“At Hope, and through our leadership of The Autism Program of Illinois (TAP), we strongly support Governor Pritzker’s executive order safeguarding the rights and privacy of individuals with autism,” said Chief Communications and Development Officer Jody Ogilvy in an email to The State Journal-Register, part of the USA TODAY Network.
“This action reflects a deep understanding of the concerns raised by families, self-advocates, and service providers across the state,” the statement read.
Hope, in its more than 65 years of operation, has built a culture “rooted in dignity, consent, and person-centered care. We do not and will not share personal health information without explicit consent, and we believe that individuals should never be reduced to data points or surveilled simply because of their diagnosis,” the statement added.
Several other groups in the state also expressed support, such as the Southern Illinois Autism Society, Access Living, the Autistic Self Advocacy Network, the Chicagoland Autism Connection, and The Arc of Illinois.
What is the federal government doing?
The National Institutes of Health and the Centers for Medicare and Medicaid Services have partnered to research causes of the autism spectrum disorder.
The agencies are creating a database of autism diagnosed Medicare and Medicaid enrollees, Reuters reported. Those agencies are within the U.S. Department of Health and Human Services.
The partnership of those agencies will help the National Institutes of Health build a real-world data platform enabling research across claims data, electronic medical records, and wearable health-monitoring devices, according to Reuters.
“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 said in a statement.
The agencies said the project will comply with applicable privacy laws. Researchers will focus on autism diagnosis over time, health outcomes from medical and behavioral interventions, access to care and disparities by demographics and geography, as well as the economic burden on families and healthcare systems.
Contributing: Swapna Venugopal Ramaswamy, Alyssa Goldberg, and Adrianna Rodriguez, USA TODAY; Reuters