Anyone else worried about the autism registry?

Post Reply New Topic

So..am not understanding , if the Democrats want any positions in the Government here..Why are they NOT campaigning ..Now! . You might think if they were serious about keeping Democracy afloat..Why not start campaigning from the day Trump got in as President. And there is not even mention of anyone wanting to challenge Trump ?
Or even hints of a offering of a Presidential person . My brain cannot help but look for a good conspirascy theory,
It allows me some distraction from , what seems to be going on here in the USA .
Then add names on a list ..? and where will it end . ?

I heard some talk about possible democrats in 2028....one is Mark Cuban....Maybe Gavin Newsom or AOC...Hopefully the MAGAS lose control over the Republican Party in 2026 or 2028.

The US Department of Health and Human Services on Wednesday unveiled a pilot program for the National Institutes of Health to tap into Medicare and Medicaid data in its search for the root causes of autism.

The database — which HHS said will draw from insurance claims, medical records and data from wearable technology such as smartwatches — is one of the first steps in HHS Secretary Robert F. Kennedy Jr.’s bid to find the causes of autism “by September.”

Early signals from health officials that they would build a database to track autism were met with swift rebuke from advocacy organizations and doctors.

NIH Director Dr. Jay Bhattacharya’s initial description last month of a “new autism registry” with “broad coverage” of the US 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 the administration has “completely frozen out autistic people.”

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

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, said 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.”

An HHS spokesperson said Wednesday, “Data with personal identifiers are subject to federal privacy laws and regulations. This data platform would be fully compliant with these laws and regulations to protect Americans’ sensitive health information.”

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 has 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,” Bhattacharya said April 22. “We’ll have, I hope, in September, something that in place where the scientists that want to want to compete for these [grant] awards will be able to do that.”

‘Flood’ of concerned calls about registry
The lack of clarity around how this autism data would be used, who would have access to it and patients’ consent to its use has spread fear throughout the community.

The Autism Science Foundation was “flooded” with calls, emails and texts after Bhattacharya’s initial comments about a registry, co-founder and President Alison Singer said. The latest announcement did not abate those concerns.

“The one that concerns me the most is people with autism who are saying that they’re afraid to go to the doctor; families who have said they have concerns about their toddlers, but they’re afraid to take them for diagnosis,” Singer said. “It’s having a chilling effect on medical care.”

Singer said the foundation is supportive of registries, which can be valuable for tracking care and outcomes over time. But the lack of details about privacy – or dialogue with the autism community before launching the project – has made it difficult to quell those concerns.

We’ve tried to allay the fear around a registry in general, but we can’t really do that until there’s more information shared from the administration about how it’s going to be put together.”

The HHS spokesperson said, “Let’s be clear: this initiative is about advancing science, improving care, and supporting families. Understanding the scope and burden of a condition is standard in public health and crucial to driving funding, improving services, and informing policy.”

Other autism advocates are adamantly opposed to the idea of a registry, citing the way Kennedy has spoken about people with autism.

“This is setting a precedent that it is somehow OK to weaponize somebody’s medical diagnosis for political reasons,” said Nicole Clark, a nurse and co-founder of the Florida-based Adult and Pediatric Institute for Health and Wellness.

“Someone having a medical diagnosis going into a registry to prove financial burden — what’s the end goal of this? What are we looking to do here?” asked Clark, who also has two young children with autism.

She described conversations with other health care providers about the fear already circulating among autistic people and their families, with some patients asking their doctors whether they can get their autism diagnosis removed from medical records.

I will never allow my name, or my daughter's, to be put on any Goddamn registry. RFK Jr., Trump, and Muskrat can all go F themselves!

Yes yes yes ... agreed 100%

Gov. JB Pritzker issued an executive order Wednesday that bars state agencies from collecting and disclosing data about autism to the federal government unless it’s medically or legally necessary.

The order was in response to a move by the U.S. Department of Health and Human Services earlier Wednesday to research and create a national autism database.

In a statement, Pritzker called the project a “threat” to the rights of disabled individuals. The order stated that the project raises privacy concerns about the collection and use of data, as well as potential “discriminatory profiling or surveillance of individuals with disabilities.”

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” Pritzker said. “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.”

Executive Order 2025-02 also requires state agencies to follow strict privacy and data protection requirements when they do disclose such data, including making personal information anonymous where it’s practicable and only disclosing the minimum amount of personal information that’s legally necessary.

The move was prompted by an HHS announcement of a research project on Wednesday. The project will allow the National Institutes of Health and the Centers for Medicare and Medicaid Services to have access to data and medical records of Medicare and Medicaid enrollees diagnosed with autism in an effort to research autism, Newsweek reported.

It also directly responded to remarks made last month by U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr., who called autism an “epidemic” and said that President Trump has tasked him with finding a cause for the “epidemic.”

“Autism is a neurological difference—not a disease or an epidemic,” Pritzker’s order read. “People with disabilities, including individuals with autism, are too often stigmatized and underestimated, and public policy should never diminish the diverse strengths and potential of this community.”

Executive orders aren’t often enacted by the Illinois governor, as last year he only signed three. This is the second order he has signed this year and is his latest action against the Trump Administration since his trade mission to Mexico this spring.