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“if you’ve been involved in good science, you have got nothing to worry about” Why did you lie, Mr. Kennedy?

7 Apr

We have recently seen a huge layoff at HHS. It’s amazing to think that just 2 months ago, Robert Kennedy was saying this wouldn’t happen.

On February 14, Robert Kennedy promised that people involved in good science would have nothing to worry about in terms of losing their jobs. He had a “generic list” of people who should be let go, but people working on good science were safe.

“I have a list in my head … we have a generic list of the kind of people that — if you’ve been involved in good science, you have got nothing to worry about,” Kennedy said during an appearance on Fox News’s “The Ingraham Angle” Thursday night.

“If you care about public health, you’ve got nothing to worry about. If you’re in there working for the pharmaceutical industry, then I’d say you should move out and work for the pharmaceutical industry,” he added.

Shortly after that, he started indiscriminately firing people. It’s so bad he’s admitting he made a mistake and has to bring people back. That’s not “you’ve got nothing to worry about”.

One area that affects the autism community directly is the Administration for Community Living.

The Administration for Community Living, which coordinates federal policy on aging and disability, was gutted – 40% of staff there lost their jobs, according to Alison Barkoff, the former head of the agency who says she learned this by talking to multiple members of her former staff. The ACL funds programs that run senior centers and distributes 216 million meals a year to older and disabled people.

These are not people doing science, but they are definitely people who care about public health who are not working for the pharmaceutical industry. It’s hard to see gutting this organization as being within Mr. Kennedy’s comments on FoxNews. At all.

Which is why I ask: did you know you were lying at the time, Mr. Kennedy? Or did you just not have the guts to stand up and defend good people doing good work when you were told to cut them?

Having watched Mr. Kennedy for decades, I never expected him to have a backbone when he got into power. Sacrificing the jobs of people who directly help disabled people in order to keep his job, yes, that’s in line with what I expected. Mr. Kennedy hired a staunch anti-vaccine pseudo-scientist, so we know where his priorities lay.

By Matt Carey

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James Terence Fisher: RFK Jr., autism and long-debunked theories

7 Apr

The Pittsburgh Post-Gazette has an article by James Terence Fisher: RFK Jr., autism and long-debunked theories. If I start quoting, I’ll copy the whole article. So, I’ll just recommend you follow the link and read the article in place.

Prof. Fisher mentions “Autism families of a certain vintage”. I am of that vintage. I’ve watched his son grow up through blog posts over the years. I too saw Robert Kennedy over decades and David Geier promote bad science and bad medicine. The harm they have caused is real and it can only get worse with them in positions of power. Prof. Fisher gives another perspective on the history, from an autism father’s point of view.

By Matt Carey

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RFK Jr’s Pee Wee Herman moment

4 Apr

This would be funny if Mr. Kennedy weren’t playing games with one of America’s greatest assets: our public health system. What specifically this time, you may ask?

The Wall Street Journal is reporting that Mr. Kennedy plans to reinstate many fired employees (RFK Jr. Plans to Reinstate Some Federal Workers, Programs). Which is a very good thing. Except they (and the rest) should never have been let go in the first place. Per the WSJ:

“Some programs that were cut, they’re being reinstated,” Kennedy said Thursday. “Personnel that should not have been cut were cut. We’re reinstating them.”

But here’s where it becomes a Pee Wee Herman moment: he meant to do that. No, seriously, he’s saying he always meant to make mistakes and bring people back:

“That was always the plan,” he said, referring to fixing mistakes and the Department of Government Efficiency’s approach to making federal cuts. “Part of the DOGE—we talked about this from the beginning—is we’re going to do 80% cuts, but 20% of those are going to have to be reinstalled, because we’ll make mistakes.”

Because that’s what a good manager does. Fire a whole lot of people and then ask the good ones to come back and not be pissed off and spend their time looking for a new job. Right?

Seriously, these are people’s lives you are dealing with, Mr. Kennedy. You don’t just tell someone, “pack your desk. We didn’t even give you the respect you deserve” and then, “please come back. We meant to do that to you. But don’t be disgruntled or anything.”

I didn’t go to management school, or business school, but even I can tell this is a bad management and bad business move. We don’t need amateurs running billions of dollars of America’s assets. Especially ones who can’t even admit mistakes.

This is a Pee Wee Herman “I meant to do that moment”. Don’t do it again.

By Matt Carey

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AAPD and Disability Advocates Sue Social Security Administration and DOGE to Stop Unlawful Cuts to Social Security Services

3 Apr

WASHINGTON, D.C. – The American Association of People with Disabilities (AAPD), the National Federation of the Blind (NFB), Deaf Equality, the National Committee to Preserve Social Security and Medicare, and Massachusetts Senior Action Council, along with individual plaintiffs, filed a federal lawsuit today against the Social Security Administration (SSA), Acting Commissioner Leland Dudek, DOGE Acting Administrator Amy Gleason, and Elon Musk in his de facto role as head of DOGE. The lawsuit alleges that recent mass staffing reductions, policies requiring individuals to seek services in person at field offices, and the elimination of critical offices within the SSA unlawfully harm Americans with disabilities and older adults who rely on Social Security services. Justice in Aging and Brown Goldstein & Levy, LLP join the lawsuit as co-counsel. 

Read the full press release here: AAPD and Disability Advocates Sue Social Security Administration and DOGE to Stop Unlawful Cuts to Social Security Services.

Operation Dork Speed (RFK Jr’s lack of publicity skills)

3 Apr

Axios has an article (White House fed up with RFK Jr.’s sluggish press shop) about how Robert Kennedy’s mismanagement of press events is frustrating White House staff. The story is worth a read and I don’t want to just copy it here. But here’s one anecdote:

On March 11, HHS held its first “MAHA Moms” event behind closed doors with Kennedy, Education Secretary Linda McMahon, Agriculture Secretary Brooke Rollins and White House Press Secretary Karoline Leavitt. No press was notified. No professional photographer was there. Fumed one attendee: “Stefanie was in charge and created a perfect press opportunity with no press, a perfect photo op with no photos.”

A perfect press opportunity with no press. For a president who lives on the press cycle, this has to be infuriating.

I will quote one more bit from the Axios article as it’s amusing in the irony. They got an official White House statement:

“The White House has a great relationship with Stefanie and HHS. We work closely day in and day out to Make America Healthy Again. It’s disappointing that bitter, anonymous sources are attempting to create conflict where none exists.”

Read the article and count how many times those “bitter, anonymous sources” are inside the White House.

Publicly they are backing Kennedy up, but those leaks don’t sound like “bitter anonymous” sources. Or, if they are, they are bitter at Mr. Kennedy’s lack of skill at handling the job he has been given.

By Matt Carey

If you read the Axios article you will see where I got the title for this piece.

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Shooting yourself in the foot: Administration for Community Living dismantled

3 Apr

A lot of autism parents supported Donald Trump and Robert Kennedy. This is especially true of those parents who believe in the (yes, once again I’ll say it: false) idea that vaccines cause autism. The decision constantly strikes me as “shooting oneself in the foot” as it’s clear that Mr. Trump and even Mr. Kennedy don’t really have respect for people with disabilities. Mr. Trump’s contempt for people with disabilities is well established. Let’s face it, if after 20 plus years being around (and syphoning money from) the autism parent community, one would think that Mr. Kennedy would have some idea of what Medicaid is.

One fact is very prominent in the mind of many parents of a disabled person: our adult children will likely spend about half their lives without us to help them. Unless you are wealthy, you are going to rely upon your fellow citizens–through our government (we the people and all)–to help our family.

One way we do that is by seeing that people can live in the community. To that end, there was an office in the Department of Health and Human Services called The Administration for Community Living.

The Administration for Community Living was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities.

I say “was” an office because Mr. Kennedy dismantled that office: “HHS Announces Transformation to Make America Healthy Again“. I think the references to 1984 and doublespeak are often overused, but, seriously? We are going to “make America healthy again” by dismantling an office that helps people with disabilities live where they want and fully participate in their communities?

Gee. Thanks anti-vaccine autism parents. Thanks for shooting yourselves in the foot and making it just a little harder for my kid to live their life as they want to live it. You got the validation you sought. Our kids pay the price. Well, them and those who will die from vaccine preventable diseases.

Good job.

By Matt Carey

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Robert Kennedy and Radical Transparency? My ass.

2 Apr

I wonder what the Kennedy clan think now. I wonder what people in his father’s generation would think of a Kennedy actively working to hide information from American citizens. I can’t say. I can say this is not the type of act I think of when I admire the Kennedy family. Not even close.

Robert Kennedy promised to be a good guy. An outsider who wasn’t tainted by Washington. Someone who fought for the little guy and wouldn’t let big government get away with things like making decisions in secret without any transparency.

Big surprise: it was a lie.

His catchphrase was “radical transparency” Sounds really cool, don’t it? This will be a new era when Government works for the people! Like this press release:

The U.S. Department of Health and Human Services and the U.S. Food and Drug Administration are committed to promoting radical transparency to make sure all Americans know what is in their food.

One could be forgiven for thinking that Mr. Kennedy planned to be radically transparent. That the government would be radically transparent. Let’s be clear Radical transparency is for other people. Not Mr. Kennedy. Who is now consolidating his position as a DC power broker.

One of the backbones of transparency in the U.S. government is the Freedom of Information Act. FOIA. This allows people outside the government, people like Mr. Kennedy only a few months ago, to ask the government to provide information on what it is doing. It’s based on the idea that we the people are the government and the information they generate belongs to us.

That was when FOIA served Mr. Kennedy’s purpose. Those days are now gone. FOIA will stand in the way of Mr. Kennedy, so it’s being gutted. Per Rolling Stone (Health Secretary RFK Jr. Promised Radical Transparency. Now He’s Closing FOIA Offices)

Or they did until Tuesday, anyway. Officials at the FDA and NIH have confirmed that many civil servants who work on FOIA in those offices have been let go, while the CDC’s FOIA desk has been completely eradicated, according to the agency’s chief operating officer. An email from Rolling Stone to foiarequests@cdc.gov returned an auto-reply that read, “Hello, the FOIA office has been placed on admin leave and is unable to respond to any emails.” Emails to several other addresses for FOIA requests at HHS agencies – to check whether they are still active – did not receive immediate replies.

For those of us who have followed Mr. Kennedy and his anti-vaccine community for decades, his dishonesty comes as no surprise. I didn’t expect his hypocrisy to be so blatant so early.

We’ve already seen the Kennedy family distance themselves from Robert Kennedy on numerous occasions. Here’s a recent quote on that:

No prominent Kennedy has publicly endorsed RFK Jr., and the list of those who have shunned him politically is a Who’s Who of the Kennedy family: Caroline Kennedy, Joe Kennedy III, Victoria Ann Kennedy, Patrick J. Kennedy, Rory Kennedy and Jack Schlossberg, the son of Caroline Kennedy.

I wonder what the Kennedy clan think now. I wonder what people in his father’s generation would think of a Kennedy actively working to hide information from American citizens. I can’t say. I can say this is not the type of act I think of when I admire the Kennedy family. Not even close.

I wonder about the hypocrisy of his supporters. People who decried the lack of transparency in the government. Will they stand against this move by their hero? Smart money says no.

By Matt Carey

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How RFK Jr. could add $100B a year to the debt

31 Mar

If autism were a vaccine injury, i.e. if it was legitimate to add autism to the vaccine injury table, I would say, “change the schedule now and pay however many families deserve it, no matter the cost.” But autism is not a vaccine injury. I will note that if Mr. Kennedy truly believed autism is a vaccine injury, he wouldn’t have hired David Geier to do the studies. Having Mr. Geier run an autism study is the equivalent of using loaded dice in a game of craps. Mr. Kennedy is buying the outcome he wants to see. If he wants to do more autism/vaccine studies, let the science speak, to quote Mr. Kennedy himself. He’s not doing that.

Robert Kennedy is (rightly) getting a lot of attention for his vaccine related actions. Just last week he pushed out the FDA’s top vaccine official (Top US vaccine official forced to resign, reports say). I will suggest it’s past time to stop reacting and start looking ahead–ask ourselves what is going to happen and what will the fallout be? That said, if we’ve learned anything from Mr. Kennedy, it’s that one should be careful and not fall into the conspiracy theory trap. So I’ll be careful and conservative as I predict what I think Mr. Kennedy is planning.

One Kennedy goal that seems obvious to me (and many others): get autism recognized as a vaccine injury. Get autism added to the vaccine injury table* to allow families to obtain compensation from the vaccine program. Perhaps he’s made this statement outright. I wouldn’t be surprised. But even if he hasn’t, I doubt many who have followed Mr. Kennedy’s words and actions would argue that this is a likely goal for him.

Let’s say he’s successful. What would be the result? Specifically, what would this cost? The vaccine court, after all, awards monetary compensation. It’s a pretty simple calculation:

$17B is a lot, but it’s not the $100B in the title of the article. Where did I get that? The support needs for an autistic person vary greatly, but, I would argue, they are higher than the average vaccine injury recipient. Also, we are talking about very young autistic children here, so there will be a lot of uncertainty projecting the lifelong needs and the court may be convinced to provide payouts on the higher end of the scale. Often in the past, I saw payments of about $1m to provide support for a lifelong disability awarded by the court, so I chose that number when I wrote the title of this piece. If we take 104,000 autistic kids being awarded $1m a year, we get $104B a year in vaccine court awards.

Let’s state the obvious: that’s a huge amount of money. That’s about 8 aircraft carriers a year. If Elon Musk found $104B a year in savings, believe me, we’d be hearing about it.

To put this more in context, the vaccine program has a trust fund of about $4.3B. This would be gone in the first year (potentially the first month) of autism cases being handled as a table injury. Technically, the vaccine court would have no money after that, and the awards should stop. This would put congress in a tight spot: allocate more money, or tell their constituents that that they voted to deny compensation to disabled children. I suspect they would vote to allocate funds. So we are talking about somewhere between $17B and $100B a year added to the budget, which would be directly added to the national debt.

I will admit that this is a very rough estimate of the financial cost. We could argue how much the average award would be. We could argue that not all autistic kids would get awards, even if autism were added as a table injury. So, maybe the total would go down. However, I also would argue that more kids will be diagnosed as autistic should autism be added as a table injury. Many more. How that balances out in the end can be debated, but I think a reasonable person can see that the answer will be billions of dollars a year and very likely many billions of dollars a year.

If autism were a vaccine injury, i.e. if it was legitimate to add autism to the vaccine injury table, I would say, “change the schedule now and pay however many families deserve it, no matter the cost.” But autism is not a vaccine injury. I will note that if Mr. Kennedy truly believed autism is a vaccine injury, he would not have hired David Geier to do the studies. Having Mr. Geier run an autism study is the equivalent of using loaded dice in a game of craps. Mr. Kennedy is buying the outcome he wants to see. If he wants to do more autism/vaccine studies, he would let the science speak. To quote Mr. Kennedy himself. He’s not doing that.

As I stated at the outset, one has to be careful of relying upon conspiracy theories. I believe I’ve stayed away from that here. I’ve made assumptions of what I think Mr. Kennedy wants to accomplish, but I think those are valid assumptions. And the cost analysis is very simple and I’ve laid it out very clearly. No chance to hide some trick in the math. I could be off by a factor of 10 and the conclusion would be the same.

One could and should ask why I am focusing on the financial cost and not the human cost. First, because autism is not a vaccine injury, we aren’t talking about a real human cost. Second, the financial cost is what will get the attention of Mr. Trump, Mr. Musk and congress. Sad to say, but I believe that to be the case.

The most logical outcome of adding autism to the vaccine injury table, in my opinion, is that congress and the president would be forced to choose between keeping autism on the vaccine injury table and ending the infant vaccine program. End the infant vaccine program and many people in Mr. Kennedy’s community (possibly including Mr. Kennedy himself), will say “mission accomplished.”** Pull autism off the table and the net effect is pretty much the same. The idea that vaccines cause autism will be accepted and vaccine uptake will drop. Many states will stop mandating infant vaccines. The infant vaccine program would be effectively dead.

Either way, Mr. Kennedy will be able to say, “See, I’m not anti-vaccine. I didn’t direct the infant vaccine program to end. They just followed the “science” (that I directed be created when I hired David Geier).”

By Matt Carey

* The vaccine injury table lays out injuries that are presumed to be caused by a vaccine. For example, if one develops paralytic polio within 30 days of getting the oral polio vaccine, it is assumed to be caused by the vaccine. If you haven’t heard of this, that’s because the U.S. doesn’t use the oral polio vaccine anymore.

** Recall that one of the people at Mr. Kennedy’s “Children’s Health Defense” is JB Handley (Vice Chair in 2018). Recall that Mr. Handley once wrote: “With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.”

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David Geier now works for HHS. He’s supposedly going to do autism/vaccine studies

27 Mar

I’ve been waiting for an announcement like this since Robert Kennedy was named Secretary of HHS. Someone from his community, someone known for pushing out bad and very biased studies, would be named to do vaccine/autism research. I’ll admit, my money was on someone else. But, in general, this announcement does not surprise me.

I first saw this in a link someone sent to me from the Washington Post: Vaccine skeptic hired to head federal study of immunizations and autism. The story is by Lena H. Sun and Fenit Nirappil. I will admit, I have cancelled my Washington Post subscription, but Lena Sun is one of the authors I will miss supporting.

David Geier is part of the father/son team that brought us the “Lupron Protocol“. You can read up on the details here and elsewhere, but I will just say flat out the opinions I’ve made clear many times: it was junk science of the worst sort and, even more, it was abusive to disabled children. In addition to that, the Geiers have a long and story career of junk science and bad medicine. It takes a lot to lose your medical license. Mark Geier (David’s father) did.

Unless he has gone back to school, David Geier holds a B.A.. He’s never held a real research position that I am aware of. He doesn’t have the background to be an assistant to the people who have done studies he apparently will be re-investigating, much less lead a project on his own. And, I think the record shows clearly, he is clearly and terribly biased.

Given news of this sort, I’d expect Science Based Medicine to have an article out quickly. Steven Novella did just that in David Geier Hired to Study Vaccines and Autism. It’s a good read and I don’t want to duplicate too much of what he says. But here’s one key paragraph:

Tapping David Geier tells us everything we need to know – this is a hit job. In my opinion, Geier has zero credibility in the scientific community due to his long history of crankery in this area. He is not qualified as is evidenced by a long history of shoddy science and discredited conclusions.

David Gorski at Respectful Insolence has also chimed in, with great detail and his own flair in David Geier: A blast from the antivax past hired to “prove” vaccines cause autism. Worth reading to get more details on the history of the Geier team.

So allow me to add a few secondary observations on what is happening. Per the Washington Post:

The information that the CDC has turned over to NIH includes the underlying data from four studies on vaccines and autism published in the 2000s, three current officials said. None of the papers found any link.

Step back and think about what this means. My opinion: the goal is not just to show that vaccines cause autism, but to discredit the previous studies and, with that, the CDC researchers who did that work. And, in general, public health researchers in general.

My next point has to do with Mr. Geier’s position at HHS. He’s listed as a senior data analyst* with the organization listed as HHS/OS/ASFR. AFSR is the Office of the Assistant Secretary for Financial Resources. A strange place to place an epidemiologist type person, isn’t it? Take a look at the org chart below. This is not a place for someone doing research like this. Not only that, but if my (admittedly limited) ability to read Mr. Geier’s entry in the HHS phone book is accurate, he appears to report directly to the Assistant Secretary or the Principal Deputy Assistant Secretary. Why? Why isn’t he in some team of, oh, I dunno, epidemiologists, reporting to someone who, call me silly, can check his work?

Also, this begs the question: is Mr. Geier going to be influencing grants? I.e., is he just shoehorned into this position or is he going to help the people who work on grants and such? This next is a stretch, but what if he’s going to help get grants to other credulous “researchers”? I suspect projects are supposed to be approved through a different office, and this is more for managing finances. But, who knows in this topsy-turvy world.

One could imagine a world where Mr. Geier was invited in to work with people with the expertise to do these studies. You know, make sure there are no shenanigans and all. That would give Mr. Kennedy a chance to get an answer he doesn’t want to see. That would take guts. Frankly, if I’ve learned anything over the past 20 years it’s this: Robert Kennedy has no guts. He can’t face the fact that he’s not only wasted decades of his life, but that he’s caused harm. Harm to disabled children and their families. No, I don’t think Mr. Kennedy has that sort of courage. And with this decision, he’s proving me correct.

by Matt Carey

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Farewell to Steve Silberman

13 Nov

For those who don’t know, Steve Silberman passed away recently. I’ve been trying to find a good way to write about his passing here. Steve wrote Neurotribes, a book which changed the way people see autism. For that I will always be grateful. He was a great science journalist, an expert on the Grateful Dead and other music and so much more.

His family and friends held a life celebration for Steve and I’ve linked to it below. The video will only be live for a short while, so don’t put off watching it. People who knew Steve much better than I and people who were much closer to Steve spoke and did a much better job than I ever could, so I will keep this brief.

If you watch the video you will hear people talk about all the amazing things Steve did. And they were amazing. But they spent most of their time talking about what a good human Steve was. That church was packed because a lot of people sincerely loved Steve.

I commented to a friend recently, “Ever notice that all the pictures people share of Steve have Steve hugging them?”

I can’t think of a better example of a successful life. Be excellent in what you do, and that includes being a beautiful human being.

—
By Matt Carey

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