Poor Oversight in Minnesota

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.   Scams plague the world of autism. Some involve shady or abusive providers.

James Walsh at The Minneapolis Star-Tribune:

To care providers, advocates and parents of children with autism, the development of the Early Intensive Developmental and Behavioral Intervention (EIDBI) health care program in Minnesota is so promising and so long-awaited, it’s no wonder its growth has been explosive.

But because of that surge of interest in the program, which serves people younger than 21 with autism spectrum disorder, and the lack of oversight, advocates and providers weren’t completely surprised by the revelations last week that the FBI is investigating alleged fraud at two — and possibly more — EIDBI centers.

“The state was interested in providing access to needed services [and] equity-based access to long-underserved communities,” said Eric Larsson, executive director of clinical services at Lovaas Institute Midwest in Minneapolis. “And, if everyone follows the rules, there’s no problem. Not everyone followed the rules.”

The program is funded by the state and federal government. Since 2017, the state reported nearly $700 million in Medicaid EIDBI reimbursements. That includes nearly $229 million in 2024 payments through Nov. 27. At the same time, the number of EIDBI providers who diagnose and treat people with autism spectrum disorder has increased from 41 in 2018 to 328 last year.

Last week, the FBI raided St. Cloud and Minneapolis autism centers as part of an investigation it said revealed “substantial evidence” of millions of dollars in fraudulent Medicaid claims. No charges have been filed yet.

Passage of Autism CARES

 In The Politics of Autism, I discuss the congressional role in the issue.

A December 16 release from Rep. Chris Smith:

Comprehensive legislation authored by Rep. Chris Smith (R-NJ) to provide robust funding and enhanced support for Americans with autism is now headed to the President’s desk to be signed into law after winning overwhelming support in a vote (374-15) on the House Floor today.

Smith’s Autism CARES Act of 2024—which was approved by the Senate in late November—will provide more than $1.95 billion over five years for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA).

“At CDC, the funding will support ongoing developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention services; at NIH, the funding will drive research as well as the coordination of autism-related activities, including the Inter Agency Coordinating Committee (IACC),” Smith said during debate on the House Floor.

“As the prime author of the Autism Cares Act of 2024 and previous iterations of the law in 2011, 2014, and 2019, I know this legislation will help make a huge difference in the lives of the millions of Americans with autism by providing robust funding for durable remedies as well as effective early detection and intervention services to allow them the highest quality of life possible,” Smith said.

“According to the CDC, 1 in 36 children in the United States—including 1 in 35 children in my home state of New Jersey—are on the autism spectrum,” said Smith.

“My legislation pursues critical research goals and focuses on responsive and effective interventions for the estimated 6.8 million individuals with autism—27 percent of whom, or over 1.8 million, are profoundly autistic,” Smith said.

Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—is expected to become law before the end of the year.

“I am pleased to help pass this bipartisan legislation, a bill I championed alongside Congressman Chris Smith (NJ-4), and send it to the President's desk. This bipartisan bill will provide vital funding to expand research and care for Americans with autism,” said Dr. Cuellar, a senior member of the House Appropriations Committee. “Through this bill, we continue important work in understanding the causes of autism, the best ways to treat autism, and incorporate the voices of those previously missed by research.”

Smith’s legislation has received strong support from the nation’s leading autism advocacy groups, including Autism New Jersey, Autism Speaks, the Autism Society, the Profound Autism Alliance, and the Association of University Centers on Disabilities.

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 will:

· Direct the National Institutes of Health (NIH) to research issues encountered by individuals and caregivers as they age, mental health concerns, issues related to aging, as well as co-occurring conditions and needs for supports and services, such as care necessary for physical safety and the prevention of self-injurious behavior;

· Increase the number of NIH Centers of Excellence to seven and ensure research reflects the entire population of individuals with autism spectrum disorder and is designed to address the full range of needs faced by individuals, including to ensure the physical safety and to promote the well-being of all Americans with autism;

· Include, for the first time, a professional bypass budget to provide the autism community with a comprehensive budget highlighting priority research areas and resources needed to advance quality of life improvements for all individuals with autism; and

· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs.

Smith, who has been a steadfast champion for the autism community for decades, said “it all started in September 1997 with Bobbie and Billy Gallagher from Brick Township and their indomitable commitment to help their two children—Austin and Alanna—and everyone else with autism.”

“We met several times and invited the CDC to Brick only to realize that federal autism programs were woefully inadequate—almost nonexistent,” said Smith, who noted he continues to plan and strategize with the couple to this day.

At Smith’s invitation, federal agencies came to Ocean County for an investigation and found that autism prevalence rates were high not only in Brick, but in nearby communities as well. In response, Smith authored the Autism Statistics, Surveillance, Research and Epidemiology Act, which was incorporated as Title I of the Children’s Health Act of 2000, authorizing grants and contracts for the collection, analysis and reporting of data on autism and pervasive developmental disabilities.

Offit v. RFK

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

He is now claiming that he doesn't want to ban vaccines.  Dr. Paul Offit warns us not to trust his confirmation conversion.

I have taken care of thousands, likely tens of thousands of children in the last 5 years.

Respiratory Viruses: INNUMERABLE

Vaccine Complications: ZERO

These lies from Tuberville are dangerous. https://t.co/xWVwsQTPOg

— Michael O’Brien 🏳️‍⚧️ (@DrOBrienMD) December 18, 2024

Trump Keeps Lying About Autism and Vaccines

 In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.  He told his nephew Fred that severely disabled people should "just die."

Eric M. Garcia at The Independent:

President-elect Donald Trump refused to say definitively that vaccines do not cause autism at a press conference.

Trump spoke alongside the chief executive at SoftBank, who pledged to invest $100 billion in the United States, as they addressed reporters on Monday.

During the press conference, Trump repeated misinformation that he has previously espoused about vaccines and autism. He also said that he had met with the heads of Pfizer and Eli Lily, as well as Mehmet Oz, his nominee to lead the Centers for Medicare and Medicaid Services, and Robert F Kennedy Jr., his nominee to lead the Department of Health and Human Services, who has repeated the debunked claims about vaccines and autism.

“So 30 years ago, we had, I’ve heard numbers of like one in 200,000, one in 100,000,” he said in terms of how many children are diagnosed with autism. “And now I’m hearing numbers of one in 100. So something’s wrong. There’s something wrong. And we’re going to find out about it.”

Trump also said he supported the vaccine to prevent polio, but said he did not like mandates when he was asked if he believed schools should require to children to be vaccinated.

Weldon v. Science

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Trump is nominating former Rep. Dave Weldon to head CDC. 

Lena H. Sun, Fenit Nirappil and Aaron Schaffer at WP:

A Washington Post review of Weldon’s public comments, media appearances and congressional letters along with accounts of those who worked with him reveal a portrait of a politician and physician who emphasized the experiences of individuals while dismissing dozens of studies based on data from hundreds of thousands of patients that showed no link between vaccines and autism.

In Congress, Weldon was “absolutely and completely dismissive” of data showing vaccines were not associated with autism, recalled Josh Sharfstein, a former Democratic staff member on the House Government Reform Committee in the early 2000s when the Republicans who were in charge held regular hearings questioning vaccine safety.

“He appeared to have a closed mind on the issue,” said Sharfstein, now a vice dean for public health practice at Johns Hopkins University and a former top official at the Food and Drug Administration. “He didn’t seem to understand that the core tool of population data analysis is one of the pivotal aspects of the work of CDC.”

...
As CDC director, Weldon could influence federal guidance on vaccines, including information posted on the agency’s website, which unequivocally states that studies show no association between vaccines and autism.

He would have the authority to countermand recommendations from the agency’s independent vaccine advisory committee about vaccines approved by the FDA, choose members who oppose vaccines or abolish the panel altogether.

Insurance companies are not required to cover the cost of vaccines unless they are included in recommended vaccination schedules approved by the CDC director. Nor would a federal safety-net program that offers free shots to more than half of U.S. children be able to cover the immunizations if the CDC director has not endorsed them.

Optum v. ABA Coverage

The Politics of Autism includes an extensive discussion of insurance and Medicaid services.

A consistent theme in autism policy is very simple:  pay now, or pay later. 

Annie Waldman at Pro Publica:

ProPublica has obtained what is effectively the company’s strategic playbook, developed by Optum, the division that manages mental health benefits for United. In internal reports, the company acknowledges that the therapy, called applied behavior analysis, is the “evidence-based gold standard treatment for those with medically necessary needs.” But the company’s costs have climbed as the number of children diagnosed with autism has ballooned; experts say greater awareness and improved screening have contributed to a fourfold increase in the past two decades — from 1 in 150 to 1 in 36.

So Optum is “pursuing market-specific action plans” to limit children’s access to the treatment, the reports said.

“Key opportunities” are outlined in bullets in the documents. While acknowledging some areas have “very long waitlists” for the therapy, the company said it aims to “prevent new providers from joining the network” and “terminate” existing ones, including “cost outliers.” If an insurer drops a provider from its network, patients may have to find a new clinician that accepts their insurance or pay up to tens of thousands of dollars a year out of pocket for the therapy. The company has calculated that, in some states, this reduction could impact more than two-fifths of its ABA therapy provider groups in network and up to 19% of its patients in therapy.

The strategy targets kids covered through the company’s state-contracted Medicaid plans, funded by the government for the nation’s poorest and most vulnerable patients. To manage Medicaid benefits, states often pay private insurers a fixed amount of funds per patient, regardless of the frequency or intensity of services used. When companies spend less than the allotted payment, they are typically allowed to keep some or all of what remains, which federal investigators and experts acknowledge may be incentivizing insurers to limit care.

United administers Medicaid plans or benefits in about two dozen states and for more than 6 million people, including nearly 10,000 children with autism spectrum disorder. Optum expects to spend about $290 million for ABA therapy within its Medicaid plans this year, and it anticipates the need increasing, documents show. The number of its Medicaid patients accessing the specialized therapy has increased by about 20% over the past year, with expenses rising about $75 million year-on-year.

Hotez v. Trump

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.  Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

 Dr. Peter Hotez is pushing back.

FBI Searches Minnesota Providers

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.   Scams plague the world of autism. Some involve shady or abusive providers.

J. Patrick Coolican at The Minnesota Reformer:

The FBI served search warrants Thursday at two autism treatment providers, as part of a wide-ranging Medicaid fraud investigation first reported by the Reformer in June.

The search warrants were served at Smart Therapy Center in Minneapolis and Star Autism in St. Cloud.

FBI Special Agent Kurt Beulke wrote in an unsealed warrant application that the state autism program has exploded in both the number of providers and cost in recent years: “The investigation has found substantial evidence that many of these companies have been submitting fraudulent claims for (autism) services that were not actually provided or that were not covered.”

According to the warrant application, employees of Smart Therapy were “18 or 19-year old relatives of the owners who had no formal education beyond high school and no training or certification related to the treatment of autism.” Many of the children did not appear to be autistic, according to a witness. The same witness said they believed parents were being paid to bring their children as part of the scheme.

Both Smart Therapy and Star Autism billed the state even when the provider — who was ostensibly giving treatment to a child on the autism spectrum — was out of the country, according to the warrant.

Again, Trump and Autism

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.  He recently told NBC that RFK Jr. should investigate the discredited idea.  He has doubled down:

 Jamie Ducharme at Time:

President-elect Donald Trump said in a new interview that he would consider altering childhood vaccination programs in the United States and questioned whether vaccines cause autism—a widely disproven claim.

When asked in an interview for TIME’s 2024 Person of the Year whether he would approve of an end to childhood vaccination programs, Trump said he would have a “big discussion” with Robert F. Kennedy Jr., the vaccine skeptic he has tapped to run the U.S. Department of Health and Human Services (HHS). “The autism rate is at a level that nobody ever believed possible,” Trump continued. “If you look at things that are happening, there's something causing it.”

Trump did not explicitly say in the interview that vaccines cause autism, a false claim that traces back to a retracted study from the 1990s. When pressed on the issue, Trump said his administration will complete “very serious testing,” after which “we will know for sure what's good and what's not good.”

But merely by suggesting that there may be a connection between vaccines and autism, Trump has reaffirmed his alignment with the misinformation that has for years fueled anti-vaccine movements.

Might the Senate Reject RFK Jr.?

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

Ursula Perano at Politico:

Robert F. Kennedy Jr. is the latest Donald Trump Cabinet pick facing trouble in the Senate.

At least three closely watched senators are noncommittal about confirming the vaccine critic, who’s being considered to lead the Department of Health and Human Services. Those include swing votes like Sens. Susan Collins of Maine and Lisa Murkowski of Alaska, as well as Sen. Bill Cassidy of Louisiana, a physician who will chair a committee that could host confirmation hearings for Kennedy.

...

Unlike Gaetz and Hegseth, Kennedy has a lot of policy-centric issues, rather than mainly personal scandals. The former Democratic-turned-independent presidential candidate has a long history of vaccine skepticism and has espoused the debunked theory that vaccines have caused an increase in autism. He’s called sexual assault allegations against him “garbage” while also noting “I’m not a church boy.” And some of his proposals, like removing fluoride from American drinking water or reevaluating childhood vaccine recommendations, have drawn instant criticism from health experts.

“I realize Covid got to be pretty controversial, but vaccinations are an important part of our public health, starting with the requirement that kids get vaccinations before they go to school,” Sen. John Cornyn (R-Texas) said, noting he has questions about Kennedy’s stance on the issue.

When asked if Kennedy’s past controversies will bog down his nomination, Cassidy said everyone wants to “predict the future” but he just wants to “let things play.”

Nobel Laureates v. RFK

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

A letter from 77 Nobel laureates:

 We, the undersigned Nobel Laureates, are writing to ask you to oppose the confirmation of Robert F. Kennedy, Jr. as Secretary of the Department of Health and Human Services (DHHS). 

The proposal to place Mr. Kennedy in charge of the federal agencies responsible for protecting the health of American citizens and for conducting the medical research that benefits our country and the rest of humanity has been widely criticized on multiple grounds. In addition to his lack of credentials or relevant experience in medicine, science, public health, or administration, Mr. Kennedy has been an opponent of many health-protecting and life-saving vaccines, such as those that prevent measles and polio; a critic of the well-established positive effects of fluoridation of drinking water; a promoter of conspiracy theories about remarkably successful treatments for AIDS and other diseases; and a belligerent critic of respected agencies (especially the Food and Drug Administration, the Centers for Disease Control, and the National Institutes of Health). The leader of DHHS should continue to nurture and improve--- not threaten---these important and highly respected institutions and their employees. 

In view of his record, placing Mr. Kennedy in charge of DHHS would put the public's health in jeopardy and undermine America's global leadership in the health sciences, in both the public and commercial sectors.

 We strongly urge you to vote against the confirmation of his appointment as Secretary of the DHHS.

77 Nobel Laureates in Medicine , Chemistry, Physics, and Economics

Name Category Prize Year

• Peter Agre Chemistry 2003
• Louis E. Brus Chemistry 2023
• Thomas R. Cech Chemistry 1989
• Martin Chalfie Chemistry 2008
• Elias James Corey Chemistry 1990
• Johann Deisenhofer Chemistry 1988
• Joachim Frank Chemistry 2017
• Walter Gilbert Chemistry 1980
• Alan Heeger Chemistry 2000
• Roald Hoffmann Chemistry 1981
• Brian K. Kobilka Chemistry 2012
• Roger D. Kornberg Chemistry 2006
• Robert J. Lefkowitz Chemistry 2012
• Paul L. Modrich Chemistry 2015
• William E. Moerner Chemistry 2014
• Venkatraman Ramakrishnan Chemistry 2009
• Richard R. Schrock Chemistry 2005
• Daron Acemoglu Economics 2024
• George A. Akerlof Economics 2001
• Peter A. Diamond Economics 2010
• Robert F. Engle III Economics 2003
• Lars Peter Hansen Economics 2013
• Sir Oliver Hart Economics 2016
• Simon Johnson Economics 2024
• Finn E. Kydland Economics 2004
• Eric S. Maskin Economics 2007
• William D. Nordhaus Economics 2018
• Edmund S. Phelps Economics 2006
• Harvey J. Alter Medicine 2020
• VictorAmbros Medicine 2024
• David Baltimore Medicine 1975
• J. Michael Bishop Medicine 1989
• Elizabeth H. Blackburn Medicine 2009
• William C. Campbell Medicine 2015
• Mario R. Capecchi Medicine 2007
• Joseph L. Goldstein Medicine 1985
• Carol W. Greider Medicine 2009
• Jeffrey Connor Hall Medicine 2017
• Leland H. Hartwell Medicine 2001
• H. Robert Horvitz Medicine 2002
• Louis J. Ignarro Medicine 1998
• David Julius Medicine 2021
• Eric R. Kandel Medicine 2000
• Ardem Patapoutian Medicine 2021
• Stanley B. Prusiner Medicine 1997
• Charles M. Rice Medicine 2020
• Sir Richard J. Roberts Medicine 1993
• Michael Rosbash Medicine 2017
• Gary Ruvkun Medicine 2024
• RandyW. Schekman Medicine 2013
• Gregg L. Semenza Medicine 2019
• Hamilton O. Smith Medicine 1978
• Jack W. Szostak Medicine 2009
• Susumu Tonegawa Medicine 1987
• Harold E. VarmusMedicine 1989
• Drew Weissman Medicine 2023
• Eric F. Wieschaus Medicine 1995
• Torsten N. Wiesel Medicine 1981
• Michael W.Young Medicine 2017
• Barry Clark Barish Physics 2017
• Steven Chu Physics 1997
• John F. Clauser Physics 2022
• Jerome I. Friedman Physics 1990
• Sheldon Glashow Physics 1979
• David J. Gross Physics 2004
• John L. Hall Physics 2005
• J. Michael Kosterlitz Physics 2016
• Anthony J. Leggett Physics 2003
• John C. Mather Physics 2006
• James Peebles Physics 2019
• H. David Politzer Physics 2004
• Joseph H. Taylor Jr. Physics 1993
• Kip Stephen Thorne Physics 2017
• Daniel C. Tsui Physics 1998
• Rainer Weiss Physics 2017
• Robert Woodrow Wilson Physics 1978
• David J. Wineland Physics 2012

Vaccine Skeptics

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

Dr. Marc Siegel at USAT:

When vaccine skeptics play to patient fears and present vaccinations as a personal choice with potential serious risk, fewer people are willing to take them. And that jeopardizes the main purpose of vaccines − community immunity. The more people take a vaccine, the ability of a virus to spread is reduced and the more lives are saved.

In the case of COVID-19, studies have shown that the vaccines have prevented millions of deaths and hospitalizations.

Unfortunately, vaccine fears are spilling over to tried-and-true immunizations like MMR (against measles, mumps and rubella) and DTaP (diphtheria, tetanus and pertussis), which depend on herd immunity to protect those who aren’t able to take them.

The MMR vaccination rate is dipping below 93% for the fourth consecutive year, with the herd immunity target at 95%.

A resurgence of pertussis, also known as whooping cough, is now hitting the United States, with a spike in highly contagious measles sure to follow.

It is natural for patients to be nervous about a needle being jabbed into their arm and less afraid of an invisible virus, but it is the job of public health officials to put this in perspective, not exploit patients' fears for political advantage.

Trump Thinks RFK Jr. Should Investigate Vaccines and Autism

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

Allan Smith and Aria Bendix at NBC:

President-elect Donald Trump suggested that Robert F. Kennedy Jr., his pick to run Health and Human Services, will investigate supposed links between autism and childhood vaccines, a discredited connection that has eroded trust in the lifesaving inoculations.

“I think somebody has to find out,” Trump said in an exclusive interview with “Meet the Press” moderator Kristen Welker. Welker noted in a back-and-forth that studies have shown childhood vaccines prevent about 4 million deaths worldwide every year, have found no connection between vaccines and autism, and that rises in autism diagnoses are attributable to increased screening and awareness. “If you go back 25 years ago,” Trump claimed, “you had very little autism. Now you have it.”

“Something is going on,” Trump added. “I don’t know if it’s vaccines. Maybe it’s chlorine in the water, right? You know, people are looking at a lot of different things.” It was unclear whether Trump was referring to opposition by Kennedy and others to fluoride being added to drinking water.

...

The debunked link between autism and childhood vaccines, particularly the inoculation against mumps, measles and rubella, was first claimed in 1998 by a British doctor who was later banned from practicing medicine in the United Kingdom. His research was found to be critically flawed and was subsequently retracted. Hundreds of studies have found childhood vaccines to be safe.