Reply to Leucovorin now approved by FDA--will providers prescribe to ASD kids?

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Reply to "Leucovorin now approved by FDA--will providers prescribe to ASD kids?"

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]I'm really reticent to jump into this thread because it has turned so political and hostile, but I am surprised no one has mentioned Dr. Rosario Trifiletti in NJ.  We came across his name on this board for PANS/PANDAS but he has spoken on the use of leucovorin for autism.[/quote]

Due to the political angle, the thread drew a lot of attention from people without non-verbal kids. The reaction would have been completely different if Trump and RFK hadn't been involved in the press event.[/quote]

The political angle IS the angle. And of course this is being touted for all kids with autism not just non-verbal kids. It’s not like it was some accident that Trumps and RFK Jr were involved. [/quote]

Your just as guilty of the binary thinking by taking the opposite extreme- that we should withhold it from kids impacted by profound disabilities.

Trump and RFK didn't make up the 20 years of data or the two double-blind RCTs that have already been done. We wouldn't be having this discussion if this was a cancer drug, but a lot people don't particularly care about kids with profound autism because they don't directly see the impact that it has.[/quote]

We wouldn’t be having this discussion about a cancer drug because Trump and RFK jr have not decided to upend and politicize cancer patients they way they have decided to do for autism. I think leucovorin and Tylenol should be studied and assessed using the NORMAL procedures already developed to ensure drugs are safe and effective. I think our kids deserve BETTER research not politicized publicity stunts. [/quote]

Other administrations likely wouldn't have the narcissistic personalities insisting on making it a political event, but there certainly would have been public and political pressure to facilitate use.

You see this in more extreme cases- people pressuring the FDA to open up drugs that *don't* have established safety records for compassionate use.[/quote]

They did a lot more here than compassionate use (which is generally on an individual level and a last ditch effort when the person is dying). Totally different from rushing a med for otherwise physically healthy *children*. [/quote]

These aren't healthy children. They are children with a profound disabilities that have a short window of time during childhood to reach important developmental milestones.

Like "last ditch efforts" for dying cancer patients, this is worth substantial risk. And that's reflected by the side effects of the drugs approved and commonly prescribed for ASD, despite not being particularly effective.

In comparison, Leucovorin has a remarkable safety profile.  Adjusting expectations/demands for efficacy accordingly, there's no rational cost-benefit analysis that wouldn't lead you to conclude it is worth a shot in kids profoundly impacted by autism.[/quote]

You've hit the nail on the head. No one cares about autistic people.  They aren't seen as worthy of help. They developed and rolled out a vaccine but completely overlooked a therapy for autism for 15 years.

People should be rioting in the street with pitchforks over this.[/quote]

I think it has been a huge disservice to people with high support needs on the spectrum to group everyone together under a single diagnosis. "High-functioning" people with ASD aggressively push the narrative that there isn't anything wrong with ASD. They're the visible and vocal ones in society. As a result, there's isn't recognition that of the urgency of improved treatments for those who have more significant challenges.

I think that disconnect is a big part of the problem. Because if the first thing you think about when you hear ASD is a non-verbal and non-potty-trained kid, then you're going to understand why it makes sense to take bigger risks on medications.

Not that there's even much of a risk in this case. It's a cheap and safe drug.[/quote]

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