HHS to build Medicare, Medicaid database in its search for the root causes of autism

WASHINGTON — A new pilot program was introduced by the US Department of Health and Human Services on Wednesday. The program involves the National Institutes of Health utilizing Medicare and Medicaid data to investigate the underlying causes of autism.

This initiative will involve the analysis of a database that will include information from insurance claims, medical records, and even data from wearable technology like smartwatches. The establishment of this database marks one of the initial actions taken as part of HHS Secretary Robert F. Kennedy Jr.’s efforts to identify the origins of autism “by September.”

Despite the intent behind creating this database, the announcement faced immediate criticism from advocacy groups and medical professionals who expressed concerns over the plan to monitor autism cases through such means.

RELATED: RFK Jr. lays out new studies on autism, shuts down ‘better diagnoses’ as a cause

NIH Director Dr. Jay Bhattacharya’s initial description last month of a “new autism registry” with “broad coverage” of the U.S. population raised red flags and questions about privacy, the Autism Science Foundation said in a statement shortly after the news. The Autism Self Advocacy Network lambasted the project as an example of how this administration has “completely frozen out autistic people.”

HHS nodded to those concerns in its announcement Wednesday. It said NIH and Centers for Medicare & Medicaid Services will start with a data use agreement focused on Medicare and Medicaid enrollees diagnosed with autism spectrum disorder, then establish a “secure tech-enabled mechanism” that will share data with “timely, privacy and security compliant data exchange.” The agencies will eventually build the pilot database out to share data on chronic illnesses and their economic burden, HHS said.

“Ever since the registry was first announced, there was an enormous sense of fear in the autism community, and they have concerns: Who’s going to have access to data? How are those data going to be used?” Helen Tager-Flusberg, director of Boston University’s Center for Autism Research and leader of the Coalition of Autism Scientists, told CNN.

There are also limitations to CMS data, Tager-Flusberg said. “If you’re talking about Medicare and Medicaid, that only focuses on certain portions of the population.”

Medicaid is a federal and state partnership covering low-income adults and children. Medicare is a federal program primarily for Americans 65 and older, although younger people with disabilities are also enrolled.

RELATED: Estimated 1 in 31 children have autism as diagnosis rates increase in the US: CDC

There are permissible uses of CMS data for medical research but very stringent privacy laws, Jeff Wurzburg, former HHS general counsel and a health care regulatory attorney at Norton Rose Fulbright, told CNN before Wednesday’s announcement. “One of the primary, overarching goals of CMS is protection of the beneficiary. So it’s certainly legitimate and reasonable to raise questions about how this data will be collected and protected.”

Autism advocates and scientists have also questioned Kennedy’s claim that health agencies would find the causes of autism by September, a timeline that Bhattacharya already appeared to walk back.

“Science happens at its own pace. We’re accelerating and cutting the red tape that normally comes with putting together a scientific program like this,” he told reporters on April 22. “We’ll have, I hope, in September, something that in place where the scientists that want to want to compete for these awards will be able to do that.”

You May Also Like
Migrant crime plagues blue city where police are under attack from teen Tren de Aragua gangsters: data

Blue city facing high migrant crime rates with police under assault by Tren de Aragua teenage gang members: statistics

Following a notable attack on New York City Police Department (NYPD) officers…
Funeral to be held Thursday in Kankakee for former Illinois Governor George Ryan, who died at age 91 last week

Former Illinois Governor George Ryan, who passed away last week at age 91, to be laid to rest in Kankakee on Thursday

KANKAKEE, Ill. (WLS) — A funeral will be held Thursday for the…
Papal conclave: Eventual new pope's chosen name may signal what's ahead

Choosing a New Pope’s Name at the Papal Conclave Could Indicate Future Plans

Once a new pope is voted in, the name he chooses could…
The pope's salary: How does the pontiff get paid?

How does the pope earn money: Exploring the pontiff’s income sources

The head of the Roman Catholic Church does not receive a conventional…
Breaking: Texas Judge Presses Pause on Removal of Venezuelans Under Alien Enemies Act

A federal judge requires the Trump administration to start handling 12,000 refugees within one week.

A federal judge in the Western District of Washington has issued an…
Disturbing hard drive 'found buried in Madeleine McCann suspect's abandoned lair contains clues that the three-year-old is dead'

New evidence found in suspect’s hideout suggests Madeleine McCann might be deceased

New disturbing evidence found at the deserted hideout of Christian Brueckner in…
Family of American hostage tortured in Lebanon wins landmark case against Iran

American Hostage Tortured in Lebanon: Landmark Case Against Iran Won by Victim’s Family

Finally, after a lengthy quest for justice spanning nearly four years, a…
Hilaria Baldwin Opens Up About The Tragic ‘Rust’ Shooting On ‘Today’: “Sometimes Bad Things Happen”

Hilaria Baldwin Talks About the Tragic ‘Rust’ Shooting on ‘Today Show’: “Sometimes Bad Things Happen”

Hilaria Baldwin appeared on Today With Jenna & Friends to promote her…
NTSB photos show NYC tour helicopter 'suddenly' broke apart midair before fatal crash into Hudson River

“NTSB Reveals New Photos of NYC Tour Helicopter Breaking Apart Midair Before Hudson River Crash”

Witness photos released by the National Transportation Safety Board (NTSB) on Wednesday…
Illinois residents rush to get REAL ID as deadline arrives, with DMV lines, including outside Loop Super Center

Residents in Illinois are hurrying to get REAL ID before the deadline, causing long lines at the DMV, even outside the Loop Super Center.

CHICAGO (WLS) — The REAL ID deadline arrived Wednesday if you’re planning…
Huge win for Trump as world's second biggest carmaker relocates manufacturing to US

Trump scores big as world’s second largest car manufacturer moves production to the US

As President Donald Trump had hoped, carmakers are starting to shift gears…
Baby seal stabbed on Oregon coast town of Neskowin prompts search for suspect, NOAA says

Search underway for suspect after baby seal is stabbed in Neskowin, Oregon coast, as reported by NOAA

NESKOWIN, Ore. — The National Oceanic and Atmospheric Administration is searching for…