On May 7, the National Institutes of Health announced a partnership with Medicare and Medicaid to launch a “real world data platform” focused on chronic disease research. Introduced earlier this year by Health and Human Services Secretary Robert F. Kennedy Jr., the pilot program will begin by collecting data from enrollees diagnosed with autism. By analyzing private health records, Kennedy aims to find a “cure” for what he calls the “autism epidemic” by September — an objective that has sparked controversy among autistic individuals, their families and medical professionals for prioritizing treatment over understanding.
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Alongside ideological concerns, the database raises questions about medical confidentiality. According to an April National Institutes of Health (NIH) Director’s Update by Dr. Jay Bhattacharya, the “Real World Data Platform” will collect information from private electronic health records — including pharmacy data, clinical notes, billing and insurance records and even wearable sensors like smartwatches — to accelerate drug development and build “national disease registries.”
The possibility of an “autism registry” evoked concerns over data ownership among the 12.2 million Americans enrolled in Medicare and Medicaid. While registries can help track treatment outcomes, autism spectrum disorder is not a disease. Framing the disorder as preventable and treatable risks reinforcing bias and deepening inequities in healthcare for neurodivergent individuals.
Attempting to allay patient privacy concerns, NIH and Health and Human Services (HHS) representatives have revised Bhattacharya’s initial description of the “Real World Data Platform.” Centers for Medicare & Medicaid Services Administrator Dr. Mehmet Oz has emphasized the insurance program’s focus on “safeguarding patient privacy,” and the NIH has redefined the database as a “secure data repository” assisting to “analyze large-scale, de-identified data” in hopes of “ultimately delivering superior health outcomes to the Americans we serve. ”
Yet focusing on an autism “cure” as a “superior health outcome” frames the NIH’s objectives in ethical controversy. During a recent press conference in response to a CDC report on the prevalence of autism, Kennedy described the increasing frequency of diagnoses — attributed to improved diagnostic tools and autism awareness — as an “epidemic” and “individual tragedy.”
Presenting before the U.S Senate Committee on Health, Education, Labor and Pensions, Kennedy attested that “fully functional” children “regress” into autism, saying, “Most cases now are severe. 25% of the kids who are diagnosed with autism are nonverbal, non-toilet trained and have other stereotypical features.” He played into narratives long criticized by autism advocates that autism is a tragedy, saying that “25%” of diagnosed children will “never play baseball,” “write a poem” or “go out on a date.”
Viewers objected with his statement and voiced concern that the NIH was fueling misinformation and misrepresentation of the complex developmental condition. In response to this criticism, Kennedy appeared on Fox News to clarify his reference to only those with “low functioning autism, or in other words, people who have full blown autism.” Although autism can present in various combinations of characteristics ranging from social communication and behavior patterns, the level of support an individual requires does not correlate with a level of “severity” or “functionality.” Kennedy’s statements surrounding the database have advanced a negative rhetoric and placed autistic individuals at the center of a dialogue in which they’re barred from participating.
This prejudiced tone coming from a federal representative along with Kennedy’s promotion of disproven external etiologies as the “root cause” of developmental disorders has undermined the NIH’s credibility.
First-year UC Santa Barbara environmental science major Kavya Thiagarajan reflected on Kennedy’s proposed timeline to “cure” autism.
“What I immediately wondered is how they thought they could ‘cure’ autism, considering it develops in the brain during utero. It makes no sense for healthcare workers to think, first, that there’s an external cure and second, that a vaccine could have any effect. So my thought is that the administration must have known that — and they are likely pushing some bizarre agenda,” Thiagarajan said.
Unfortunately, an “agenda” remains a possibility for the NIH. Kennedy has appointed David Geier to lead his autism research as senior data analyst. Geier, once charged by the Maryland State Board of Physicians for practicing medicine without a license, has published multiple discounted studies in medical literature attempting to correlate autism diagnosis to trace amounts of mercury in vaccines. In an April letter to Secretary Kennedy, Democrats from the House of Representatives described Geier as a “vaccine cynic and fraudster” with no scientific qualifications who “has directly endangered the lives of children.” Geier’s appointment is just another example of the federal administration’s push to end vaccine funding abroad and domestically, despite approximately 73% of Americans supporting childhood vaccination requirements in 2025.
Ultimately, Kennedy’s Real World Data Platform threatens patient privacy, federal healthcare, neurodiversity and scientific validity in the United States. Most concerning, however, is his role in advancing a fear of difference — one that reflects a broader, troubling push for uniformity of thought across the country. In framing neurodivergence as a disease that must be eliminated, our administration rallies political support through fear. There’s no “cure” for autism, and rhetoric which targets cognitive difference fosters discomfort with diversity in all its forms — perspective, thought, ability and belief.
A version of this article appeared on p.10 of the May 15, 2025 edition of the Daily Nexus.
