Reply to HHS report will link autism to acetaminophen and folate deficiency

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Reply to "HHS report will link autism to acetaminophen and folate deficiency"

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]I feel like there is a disconnect between people who are coming here to show how cool they are to dislike this unpopular politician and people who can recognize that having 99% of autism research funded by the same three organizations (one of which is controversial AS). I think RFK is a bad person that has attached himself to legitimate criticisms AND that has identified a few ok points (this not being one of them). [/quote]

There’s no disconnect. If you cannot perceived that RFK is a brain damaged maniac I don’t know what to say. What kind of autism research was being repressed? Spell it out here, don’t be cute. [/quote]
Here you go back to him again. Do you actually know anything about autism or the research around it or not? Do you not understand that there is a difference between repressed and not done? Like I have a friend who is involved in research for another rare genetic condition that because qualifies for orphan drug designation (aka more $$ for pharma) has made more progress in the last ten years than autism research has in the last fifty. One thing that rfk’s brainworm has done is the autism data project which has resulted in more proposals than this area has seen in forever. 
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Do you really think that an orphan drug will produce more money than autism? 
To be eligible for orphan drug designation, a disease or condition must meet the following criteria:
Affect fewer than 200,000 people in the United States. [/quote]
Sigh. The point is when you develop a drug under that designation you get two years more of marketing exclusivity which means that you’re not competing with generics for longer which means….$$$$. So it can be more appealing for pharmaceutical companies to develop.  Now imagine an autism drug that had that sort of competitive advantage.

That said….i personally think that autism has many causes (kind of like what is described here: https://www.scientificamerican.com/article/autism-has-no-single-cause-research-shows/)   that what is likely to happen that any one drug, if it’s even possible, would probably only deal with a limited amount of autistic people. There was also that recent study that identified four distinct autism subtypes. Also would not be crazy if a particular autism subtype was really a condition that impacts 200,000 people etc [/quote]

I don't think you understand the scope or the economics already at play.

There are about 2 million kids with ASD, and another 5 million adults. About half have significant enough support needs that they take medication to manage their conditions.

Similarly, about half of kids diagnosed with ASD will receive ABA services. At any given time, utilization of ABA is lower- closer to 20-30% of kids, but still a significant number. At least, this seems to hold when looking at populations that have ABA coverage in their health insurance plans.

The cost of ABA provides an idea of the price the health care industry is willing to spend. And ABA is very expensive, ranging from $60k-$240k a year depending on the level of support (hours, basically). And the kids with higher needs are likely to receive more service hours for longer periods of time.

Back of the envelope calculations are hard. ABA companies get about $5 billion in revenue. If coverage was universally available in group plans, that could easily double to $10 billion.

And that's just ABA. Kids, whether they receive ABA or not, are often receiving speech and occupational therapy. They're going to frequent doctors appointments to adjust medications. Some kids receive short-term inpatient treatment programs.

The point is, this is a large market that is already accustomed to spending large amounts of money. There's a very strong financial incentive to develop effective medications and treatments.[/quote]

Well, first ABA is not a drug. So orphan drug like designation would not cause a company like Merck to leave pharmaceuticals and enter the behavioral health market. You also are conflating having autism being expensive with financial incentives existing that encourage the development of other treatment options.

ABA is only profitable because of the advocacy of families getting it covered by insurance. That’s why private equity has entered that space much more in the past decade. The financial incentives did not lead to the development of ABA whatsoever. That’s like saying talk therapy developed because…some company (im not sure who the financially interested party would be…the AMA?) thought that they could somehow monetize a bunch of psychologist providing therapy.

The only drugs that are approved specifically for autism symptoms are risperdone and abilify. You also can’t just lump in prescription drugs for other things as “for their conditions” to argue that the financial incentives are already there specifically for autism. Do you have some reason to believe that most people who take things like metformin or stimulants or anti-anxiety medication are autistic? [/quote]

As states in the earlier post, money spent on ABA is an indication of the potential market for an effective drug for autism. Insurance companies are already spending billions of dollars on treatments for kids with autism. A drug that reduces the need for ABA and associated therapies would be worth billions.

The fact that there isn't one is not due to a lack of a financial incentive for pharmaceutical companies.

Surely you know that to be true, so I don't understand what your objectives and motives are here.[/quote]

The truth is that autism is far, far too heterogeneous for there to be “a” drug for “autism.” if we actually wanted to do this research, we would have to parse out the different types and the different challenges. And because those challenges overlap with other conditions, it’s likely not even going to be an “autism drug” but rather a drug that works for shared symptoms… like Risperdal and Abilify for agitation in autism (but also agitation for a lot of other conditions).

The most severe cases of autism come with intellectual disability as well - I just don’t think it is reasonable to think that we will ever have a pill to raise IQs.

If anything maybe there is broader research on neuroplasticity and brain stimulation that would one day be able to grow or fix portions of the brain that are not working in autism. [/quote]

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