RFK Jr, HHs & MAHA News | Chaos at HHS

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nycfan said:
But the anecdotes about non-verbal kids in studies using folate quickly becoming able to verbalize has a lot of parents of nonverbal autistic kids, in particular, desperately hoping this is a magic bullet, at least for some.

“… A key breakthrough in 2004 was the discovery that some children with autism-like symptoms had a condition that blocks folate transport into the brain — even if their blood folate levels are normal. Frye estimates that up to 70 percent of those with autism may have a gene variation that would make them susceptible to this problem.

… Frye, director of research at the Rossignol Medical Center in Phoenix, hypothesized that leucovorin might be able to help, and he and his colleagues launched double-blind placebo-controlled trials that were funded in part by the National Institutes of Health and Defense Department. They involved children who took a twice-daily pill version of leucovorin.

The extent of the effects surprised even Frye. In his first study of 44 children with 12 weeks of treatment, 67 percent of those who took the drug saw improvements in receptive and expressive language.

… Larger trials of the drug have been slow to launch because of funding challenges, Frye said, as its original patents — dating back to its 1952 approval — have expired, leaving pharmaceutical companies with little financial incentive to support further research.

…
The initial step to obtain the pills typically requires a blood test that detects autoantibodies — proteins created by the immune system that attack healthy tissue — blocking a receptor essential for transporting folate into the brain. Those who test positive are significantly more likely to respond to treatment, and those who have positive outcomes tend to follow similar patterns.
Kimberly Baldridge’s son, Ryan Jr., was 6 when he began the medication after several other unsuccessful efforts. At the time, his only form of communication was echolalia — repeating what others said. “They’d say ‘hi buddy,’ and he’d repeat ‘hi buddy,’” said Baldridge, who is from St. Louis.

But after starting the drug, “he was pinpointing a conversation back and forth.”

“It seemed like before he was lost in outer space, and this medication I feel like brought him into fully being present,” she recalled.
Now 8, Ryan has started second grade in a mainstream school.

His parents say he still has autism — he can become dysregulated, struggles with eye contact at times and remains fixated on airplanes — but they are confident in his future.

… “I don’t think it’s a magic pill,” his mother said. “I don’t think a child who couldn’t talk is suddenly going to recite Shakespeare and talk politics, but what we’ve seen is a more gradual change, and for our son, that change has changed his whole life.”“
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That first paragraph really hits home for me.

Gosh if only my son could have the experience of this kid.
 
Ddseddse said:
Yup, There's nothing remarkable in this whatsoever beyond the "the imperfect but best we've got process that we've had for the last century mostly works well and definitively produces superior results to any other know way of developing therapies and works maximally well when people who know nothing about the process stay the fuck out of it.

If we all walk away and ignore Leucovorin for the next 5-10 years and let the process do what the process does, that would lead to the best possible outcome for US public health.
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That last sentence is hard to take when you have a young non-verbal child. 5-10 years is a long time for parents like me.

This may be another of a long line of dead ends but I would absolutely be willing to try it for my son.
 
ChapelHillSooner said:
That last sentence is hard to take when you have a young non-verbal child. 5-10 years is a long time for parents like me.

This may be another of a long line of dead ends but I would absolutely be willing to try it for my son.
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I wouldn't wait either. At the very least I would get the blood test. I'm fairly sure that would be possible paying out of pocket with absolutely zero basis for that belief.

If it turns out my kid was likely to benefit from the treatment, I'm going to move heaven and earth to get the medicine including going to a different country to get it.
 

RFK Jr.’s Team Wanted to Tout an Autism Therapy. He Went After Tylenol Instead.​

A meeting with Tylenol’s maker convinced Kennedy to put the emphasis on acetaminophen​


🎁 —> https://www.wsj.com/health/healthca...c?st=73zZ8w&reflink=desktopwebshare_permalink

“…
Kennedy spent the first weekend of September poring over acetaminophen studies and calling scientists. After summoning Kirk Perry, interim CEO of Tylenol manufacturer Kenvue, Kennedy’s mind was set. He found Kenvue’s evidence in support of the drug to be poor, and became convinced that he had a moral duty to get the word out about the risk of acetaminophen as soon as possible, the people said.

President Trump was thrilled with Kennedy’s plan, the people said, even though Bhattacharya, Oz and Makary had advocated for putting the emphasis on leucovorin. Trump relished the chance to tell the world their possible reason for why one in 31 children nationwide had been diagnosed with autism, the people said. Trump for years has publicly aired his keen interest in the condition.…”

——
It has long been noticed that Trump’s interest in autism became keen after Barron Trump was born:

“… Mr. Trump’s interest in autism dates at least to December 2007, when he hosted leaders of the advocacy group Autism Speaks at his Mar-a-Lago residence in Florida. He theorized then that babies were getting too many shots at once; a few months later, he said that he and his wife, Melania, had slowed down the vaccine schedule for their son Barron, then about 2.

“What we’ve done with Barron, we’ve taken him on a very slow process,” Mr. Trump said at the time. “He gets one shot at a time, then we wait a few months and give him another shot, the old-fashioned way.”

… Bob Wright, and his wife, Suzanne, grandparents of a child with autism, had founded Autism Speaks two years earlier and asked Mr. Trump to hold a fund-raiser — a concert featuring the singer Lionel Richie — to benefit the group in March 2008.

… But she [then VP of Autism Speaks] remembers the president raising it when he and Mrs. Trump greeted her and the Wrights over brunch at Mar-a-Lago.

“Melania was carrying Barron, he was a baby, and even at that time, Donald Trump did talk about his interest and concerns around vaccines,” she said, adding, “I do believe that he comes to the question of trying to find the cause of autism legitimately.”

Mr. Trump may also have political reasons for wanting to address the autism epidemic. He is well aware that Mr. Kennedy, who has also repeatedly claimed that vaccines are linked to autism, helped get him elected.…”

www.nytimes.com

For Trump, Who Has ‘Strong Feelings’ About Autism, the Issue Is Personal

The president delivered impassioned — if scientifically dubious — remarks about what he described as one of “the most alarming public health developments in history.”
www.nytimes.com www.nytimes.com

[it is not irrational to think that Melania, then in her mid 30s, was worried (to paranoid) about the heightened autism risk given that Trump was then around 60, but it sounds like they were impacted by an early case of do your own research gone sideways]
 
During Trump 1.0, there was speculation that Barron Trump is autistic, which Melania Trump later denied and called hurtful.

Melania Trump says Barron autism rumors caused ‘irreparable damage’​

Former first lady said a 2016 video and tweet led to Barron Trump, then 10, being bullied, as her memoir reveals​


www.foxnews.com

Melania Trump says Barron autism rumors caused ‘irreparable damage’

Melania Trump is speaking out in her new memoir about previous rumors that her son, Barron Trump, has autism. Psychologists weigh in on the potential harms of publicly speculating about neurodivergent symptoms.
www.foxnews.com www.foxnews.com
 


“… The declaration, which is expected to be adopted at the ongoing high-level meeting of world leaders in New York, aims to set an ambitious roadmap through 2030 and beyond for the prevention and control of non-communicable diseases and for promoting mental health and well-being.

Kennedy said the declaration was filled with controversy and contained "provisions about everything from taxes to oppressive management" from international bodies.

… "It exceeds the U.N.'s proper role while ignoring the most pressing health issues, and that's why the United States will reject it," he added, without specifying what those health issues were.

… Kennedy called on the international community to come together to combat the "scourge" of ultra-processed food. He said U.S. President Donald Trump wanted to lead the effort globally against such foods and the medical and physical illness associated with it.

… Kennedy also criticized the World Health Organization, saying it cannot claim credibility or leadership until it undergoes radical reform. …”
 
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I know I looked to a 79-year-old real estate developer for medical advice when I was pregnant …

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ChapelHillSooner said:
That last sentence is hard to take when you have a young non-verbal child. 5-10 years is a long time for parents like me.

This may be another of a long line of dead ends but I would absolutely be willing to try it for my son.
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This is exactly why we have an FDA. Because people in your position are susceptible to scams and bullshit that end up being harmful in the end.

It would be a worthwhile civics project for all Americans to complete a short exercise on why our agencies exist. The problem is that effective agencies solve problems, and then when they are solved, people forget why the agency existed.

The EPA exists, more or less, because people were dying of smog and rivers were literally burning. It was protecting people from poison.
The NLRB exists, more or less, because employers refused to pay minimum wages and exploited workers at every opportunity.
The SEC exists, more or less, because stock scams were a substantial cause of the Great Depression and in any event, led to all sorts of fraud that badly misallocated capital.
The Mine Safety Agency exists because . . . well, you know.
And the FDA exists because desperate people will try miracle cures.
 
evrheel said:
www.rawstory.com

Trump launches AI program to deny Medicare services

Taking a page from the private insurance industry’s playbook, the Trump administration will launch a program next year to find out how much money an artificial intelligence algorithm could save the federal government by denying care to Medicare patients.The pilot program, designed to weed out...
www.rawstory.com www.rawstory.com
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AI could be fantastic for this use case or a disaster. My guess is it will be a bit of both.

Traditional data science, like the stuff that SAS does, relies on structured data. Things like blood pressure, weight, age, sex, etc. and making decisions based on sample patient profiles that should or shouldn't get a procedure. But there was quite a bit of nuance beyond those hard numbers that clinicians have gathered.

AI in this context is very good at looking at unstructured data like physician notes and Medicare guidelines and then comparing that to examples that should or shouldn't be denied. It's harder and less reliable but it can also even compare the case to Medicare guidelines without seeing samples of what should and shouldn't be approved. It can even look at things like x-ray images although I suspect that these pilot programs won't do that yet.

Ideally, this pilot would keep the current structure of no pre-authorizations, but let the different vendors flag procedures they would deny in a sample data set and then have humans review those decisions to see how good the AI is. Then let the different vendors improve their product and then select the best. Maybe they've already done that and this is the next step.
 
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