FDA Autism Treatment Clickbait
“We have witnessed a tragic four-fold increase in autism over two decades,” said FDA Commissioner Marty Makary, M.D., M.P.H. “Children are suffering and deserve access to potential treatments that have shown promise. We are using gold standard science and common sense to deliver for the American people.”
You would think that some sort of actual treatment for actual autism was being announced.
FDA Takes Action to Make a Treatment Available for Autism Symptoms – https://www.fda.gov/news-events/press-announcements/fda-takes-action-make-treatment-available-autism-symptoms
Nope, total click bait.
If you read the rest of the press release (less the hyperbole from the FDA officials), leucovorin calcium tablets are being proposed for use to treat cerebral folate deficiency (CFD), which among many other symptoms has some that are autism like:
Individuals with cerebral folate deficiency have been observed to have developmental delays with autistic features (e.g., challenges with social communication, sensory processing, and repetitive behaviors), seizures, and problems with movement and coordination
Apparently, 20 cases worldwide have been reported (oops, the Internet steered me wrong earlier… see below).
Read for yourself:
Cerebral Folate Transport Deficiency
Leuco-what?
Earlier this month, a local parent texted me about my opinion about leucovorin to be prescribed for their child as a treatment for autism. I had no idea what it was, took a quick look, and basically said it looked like it was being proposed for a very specific condition – cerebral folate deficiency– and not autism…. and promptly forgot about the whole thing – another Autism Cure Magic Bullet* bites the dust.
Leucovorin Strikes Back
BUT – ten days later (last Friday), I got contacted by someone in the Press about what I thought about leucovorin and it’s use for treating autism.
When someone from the Press reaches out to you, it’s time to do a little bit more homework.
This is what I sent to them (mostly right…I wrote this based on the “alleged facts” from AI assisted search plus my own follow up search on the autism numbers and direct history with the ADHD numbers)
My understanding is that leucovorin doesn’t treat autism but a different condition, cerebral folate deficiency, that has some similar symptoms to autism. This is not the same thing as treating Autism. CFD apparently affects somewhere between 1 in 4000 and 1 in 6000 people (CORRECTION AFTER I TALKED TO THEM -I was wrong on this – it is VERY RARE – see above – so much for AI assisted research). vs 1 in 31 for autism in US for 8 year olds as of 2022 and 1 in 100 globally.. so it is at least 40x rarer (the error continues…the actual odds are around 1 in 400 million or 10 million-ish times rarer than autism – thanks AI!) than autism and has notably distinct symptoms from autism in most cases as far as I have read. so it is unlikely that CFD screening would make sense for most people with autism… 25% (1 in 4) of autistic people have ADHD yet there is no routine screening for ADHD for those who are diagnosed with autism.
NOTE – Please verify this data!!!! I’m not a professional (CLEARLY!).
Surprisingly after that, the reporter still wanted to talk with me.
So we had a probably 20 minute or so me during interview, which no doubt will either disappear or turn into some sort of embarrassing quote for me for which I apologize to you.
But by the end of the call, I was thinking about it more and more as medical clickbait… Maybe the pharmaceutical company was trying to bump this product or their stock? (NOPE – GSK – Glaxo Smith Kline as it used to be called- actually made the change in use for leucovorin in response to a request from the FDA… no stock bump by the way… maybe this is one of those “autism cure” conspiracies that the current administration has decided to pick up? I have no desire to do more research!)
And then I went back and really read the press release carefully (third times the charm)
All the autism “treatment” is in the woo-woo marketing language from the FDA, not in the boring, clinical bureaucracy text.
The title of the press release talks about treating autism symptoms if you read what is actually what is being treated for autism like symptoms for a completely different condition.
Not Autism at all
It is a cruel teasing of hope for desperate people.
This condition as I noted in my response to the reporter is quite rare – way more than the 40 times rarer than autism that I told him – 20 cases worldwide!
Based upon that little I’ve read the condition, it also presents with other symptoms that have nothing to do with the autism-like symptoms that are the focus of this press release:
Signs and symptoms, usually apparent after the second year of age include:
Movement disturbances
Loss of previously acquired mental and movement abilities
Poor muscle control (ataxia)
Epilepsy
Abnormally high muscle tone (hypertonia)
Loss of brain cells and connections between them (cerebral atrophy)
Loss of a type of brain tissue known as white matter (leukodystrophy)
Delayed cognitive development
Intellectual disability
Speech difficulties
Seizures
(the “apparent after the second year of age” may be where the autism “linkage” gets picked up)
And by the way, the test to verify if you have this condition is a lumbar puncture, which should give any person pause.
A lumbar puncture, also known as a spinal tap, is a test used to diagnose certain health conditions. It’s performed in your lower back, in the lumbar region. During a lumbar puncture, a needle is inserted into the space between two lumbar bones, called vertebrae. Then a sample of cerebrospinal fluid is removed. This is the fluid that surrounds the brain and spinal cord to protect them from injury.
For something that 20 people on Earth are known to have.
But now this press release has turned this into yet another autism story.
And let’s call it what it is a BS – RFK Junior / Trump administration Autism story.
It is cruel Clickbait of the worst kind.
First Tylenol now this.
But fool me once shame on you. Fool me twice shame on me….and you if you have any shame
On Autism Cure Magic Bullets*
A year or so into our family’s, autism journey, someone announced a treatment for some autism symptoms.
This happens every so often
Even then we had gotten a bit jaded about a promise of an autism treatment or cure.
But this one was tempting.
The Autism profile fit our child.. and the treatment consisted of I wanna say something like broccoli concentrate juice that we could buy for I don’t know 20 bucks for a month’s supply.
Just add it to a cup of milk.
Safe and no big deal.
We weren’t expecting much and there didn’t in seem to be any risks.
What the heck we tried it..
….I’m not even sure we finished the bottle..
It didn’t seem to do anything.
No cure. No change. No magic bullet.
Life goes on.
