HHS to build Medicare, Medicaid database in its search for the root causes of autism
Share this @internewscast.com

The US Department of Health and Human Services announced on Wednesday a new pilot initiative that allows the National Institutes of Health to use data from Medicare and Medicaid to investigate the origins of autism.

This database, as stated by HHS, will incorporate information from insurance claims, medical records, and data collected via wearable technology such as smartwatches. It represents an early phase in HHS Secretary Robert F. Kennedy Jr.’s effort to identify the causes of autism “by September.”

However, initial reactions from health officials about building a database to monitor autism were quickly criticized by advocacy groups and medical professionals.

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.”

Share this @internewscast.com
You May Also Like
Son of former Iranian diplomat goes viral for flaunting jet-setting, extravagant lifestyle

Ex-Diplomat’s Son Sparks Global Buzz with Luxurious Lifestyle and Jet-Set Adventures

Sasha Sobhani, the son of a former Iranian diplomat, has captured the…
Buffalo Grove High School crash today: Crossing guard critically injured in crash near Dundee Road, students say

Buffalo Grove High School Incident: Critical Injuries Sustained by Crossing Guard in Collision Near Dundee Road, According to Students

In Buffalo Grove, Illinois, students at Buffalo Grove High School are receiving…
Zohran Mamdani plan for new homeless intake shelter put on hold after East Villagers sue to stop it

Zohran Mamdani’s Proposal for New Homeless Intake Shelter Faces Delay Amid East Village Legal Challenge

A state judge has temporarily blocked a contentious city initiative to move…
LIVE: Opening statements begin in trial for 4 suspects charged in Jacksonville rapper Foolio's murder

Live Coverage: Opening Statements Unfold in High-Profile Trial of 4 Accused in Jacksonville Rapper Foolio’s Murder

The courtroom drama unfolds in Tampa, Florida, as the trial begins for…
Sneaky bear snatches bag of Doritos left outside CT home, video shows

Bear Heist: Connecticut Home Security Captures Bear Stealing Doritos in Broad Daylight

It seems this bear is a cut above the rest! In a…
DeSantis says he's taking up Jeffries' invitation to 'F around and find out' on Florida redistricting effort

DeSantis Accepts Jeffries’ Challenge: Florida Redistricting Battle Heats Up

Florida Governor Ron DeSantis criticized Democratic House Minority Leader Hakeem Jeffries for…
Chicago Bears stadium news: Illinois lawmakers expected to vote Wednesday on bill

Illinois Legislators Scheduled to Cast Votes on Chicago Bears Stadium Bill This Wednesday

In a significant move for Illinois sports fans, state lawmakers are poised…
Dr. Oz touts 'Fraud War Room,' ending payments to 400 Calif. hospices over fears of $100B fraud

Dr. Oz Launches ‘Fraud War Room’ to Combat $100 Billion Hospice Scam in California

WASHINGTON — In a sweeping move by the Centers for Medicare &…
Australian surfer miraculously survives attack from ‘world’s most venomous animal’

Surfer Defies Odds: Survives Attack by World’s Deadliest Sea Creature

An Australian surfer had a close brush with death after an encounter…
Influencer Gabrielle Carrington accused of running down Klaudia Zakrzewska

Shocking Allegations: Influencer Gabrielle Carrington Accused of Hit-and-Run Against Klaudia Zakrzewska

In a dramatic court appearance, beauty influencer Gabrielle Carrington, aged 29, made…
UK landlords advertising 'Muslim only' housing in potential violation of discrimination laws

UK Landlords Face Scrutiny for ‘Muslim Only’ Housing Ads Amid Discrimination Law Concerns

Recent reports suggest that some landlords in London are purportedly listing properties…
Curious black bear tranquilized by cops, topples out of tree after hours-long standoff in Albany

Albany Police Safely Capture Black Bear After Hours-Long Tree Standoff

Just like in a classic fairy tale, a black bear’s adventure in…