Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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).

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.

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.

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.

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

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.

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?

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.

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.

I completely agree that part of the problem that “autism” is extremely heterogeneous and all of the subtypes are lumped together.

I drug would not need to raise IQ to improve symptoms and quality of life. Hence why there are drugs that have been incredibly promising for fragile X. https://www.npr.org/sections/shots-health-news/2024/09/22/nx-s1-5076913/fragile-x-experimental-drug-helping-autism-adhd-intellectual-disability

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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).

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.

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.

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.

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

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.

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?

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.

Money spent on ABA shows that there is a potential market for ABA to extrapolate that to anything else is not supported by any data. Also unclear that a drug would reduce the need for ABA or any associated therapies. Do statins reduce the need for cardiologists? Do any number of drugs for mental health conditions remove the need for mental health professionals? Why would you assume that these unrelated things would not be complementary? But even putting that all aside insurance companies don’t develop drugs so I’m not sure how you repeatedly stating that is really relevant. Again, no one is disputing that autism is expensive.

There have been a number of drugs that have not been developed because the financial incentives are not there. Suramin is one that was initially promising (I assume ended up being a dud as I haven’t heard anything about this since) but Bayer declined to provide for potential study because it is 100 year old, obviously usual patent laws would not apply so not worth investing millions in development. There were also numerous things in mice models that did not end up moving towards research and development.

Also just to point out something else that is illogical in your reasoning. You are saying “hey there’s a lot of people with autism who do ABA.” However, there is a lot of heterogeneity in autism symptomatology even within autistic people who receive ABA therapy. Things that pharma are most interested in are conditions that are uniform like obesity, high blood pressure, etc. In contrast, the research that is out there indicates that there are likely multiple different subtypes of autism with different symptoms etc. so any drugs that would be developed for autism symptoms could very well only impact certain subtypes. If you are going to spend a billion dollars to develop something that isn’t going to cut mustard.

I think you’re implying with: “ The fact that there isn't one is not due to a lack of a financial incentive for pharmaceutical companies” that coming up with a treatment for autism symptoms is just too impossible no matter the potential market. But I see no evidence within the pharmaceutical industry (not insurance or behavioral health) that the incentives are there. Because in rare related conditions (subtypes?) of autism where the drugs are eligible for orphan drug designation there is substantially more progress. Right now there are multiple drugs for fragile x and Rett’s that have been granted orphan designation by the FDA and are under development.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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).

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.

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.

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.

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

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.

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?

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.

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.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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Anonymous wrote:

Anonymous wrote:

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Anonymous wrote:

Anonymous wrote:I don’t understand some of you upset over this, it’s not new information. I am grateful it is now being discussed more prevalently and thus might prevent just 1 child from developing autism.

A child does not develop autism. A child is born with it. Genetics is where you want look- not food, vitamins, supplements, or medication.

Not true at all. Sometimes it’s present from birth while other times development is typical until it isn’t. Reasons TBD.

Just because it's not observable for a time doesn't mean the condition isn't present. There are plenty of examples of genetic conditions that don't manifest until later in life, much later than autism.

Go do some research, you aren’t ready for a discussion on this topic if you think all cases present from birth.

Okay, maybe there's a problem with "present," the verb versus the noun. A person may show no symptoms at all for years, but genetic underpinning is there and slowly working its way to being observable. For an extreme example, think of Huntington's disease: If you have the gene and live long enough, you will get the disease. But it may not manifest until midlife despite being undetectable (other than by genetic testing) for decades.

I suppose it's possible, perhaps likely, that there are different forms of what we label "autism," and some forms may be triggered by environmental factors. But even those cases likely have some underlying genetic vulnerability.

I wasn't aware of the type of folate deficiency that may occur in certain individuals (again, genetically determined), in which certain types of folate can't be metabolized and block folate receptors.

DP. There are decades of research on the prenatal environment and autism risk. Numerous autism/identical twin studies. Cerebral folate deficiency is a thing that exist. There are many other factors which are not purely genetic. Also the sheer volume of genes that have been identified as moderate impact for developing autism. Just because you hate RFK jr doesn’t make you any more informed than he is. Many people on here have autistic kids and have worked with geneticists and participated in research and actually read the studies as opposed to reading a few articles summarizing it written by people who majored in English.

Honestly I find this whole thing a bit of a nothing after he hyped up how he was going to blow the lid of this autism thing.

I don’t think there’s any lid left to blow, those of us that are in the field understand there’s a range of contributing factors and things like medications and yes even vaccine ingredients and other chemicals etc are possible environmental contributors along with genetic components. All these things have been known since at least the 90s, probably before that.

I think RFK’s job will be informing the masses and cleaning up research to minimize data suppression and hopefully eliminate some of the problems with research efficacy and conflicts of interest.

Hopefully in 10 years none of this will be taboo to talk about, parents and physicians will be better informed and understand environmental and genetic risks, and they will be able to recognize early signs and know how to gain access to early intervention and childhood services. Hopefully we can get improvements in adult services too as those are lacking.

Such DUMB statements. Please explain what early interventions are helpful for autism. Parents with autistic children really want to know about these imaginary interventions. Are you saying autism can be cured with these magical interventions? Please elaborate.

What the hell does your comment about RFK's job being "informing the masses" and "cleaning up research" mean? The man is neither sane nor intelligent enough to do either. He clearly will increase data suppression.

Initial poster here is correct. The second poster, not so much.
Most people understand that this is a multifactoral factor that includes genetics and environmental triggers. Also, the growing research for early intervention is very positive, but no it does not cure autism.

If you don’t think that research has been impacted by politics and especially Fortune 500 companies for decades, you are the problem.

Ok … How do you think what RFK is doing is helping?

RFK Jr Mr Brain worm would not know one thing about science. He is a heiron addict for god's sake.

DP. The position is an administrator not a scientist position. The previous person in his role was also a lawyer. I think that you can definitely make a lot of valid criticism about how he is managing his job and the personnel losses but understanding science has not really been a requirement.

Well not being actively hostile towards science and research was heretofore considered a basic requirement of HHS secretary.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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).

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.

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.

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.

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

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.

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?

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.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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).

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.

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.

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.

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

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.

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?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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).

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.

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.

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.

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

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.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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).

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.

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.

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.

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

Anonymous wrote:

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Anonymous wrote:I don’t understand some of you upset over this, it’s not new information. I am grateful it is now being discussed more prevalently and thus might prevent just 1 child from developing autism.

A child does not develop autism. A child is born with it. Genetics is where you want look- not food, vitamins, supplements, or medication.

Not true at all. Sometimes it’s present from birth while other times development is typical until it isn’t. Reasons TBD.

Just because it's not observable for a time doesn't mean the condition isn't present. There are plenty of examples of genetic conditions that don't manifest until later in life, much later than autism.

Go do some research, you aren’t ready for a discussion on this topic if you think all cases present from birth.

Okay, maybe there's a problem with "present," the verb versus the noun. A person may show no symptoms at all for years, but genetic underpinning is there and slowly working its way to being observable. For an extreme example, think of Huntington's disease: If you have the gene and live long enough, you will get the disease. But it may not manifest until midlife despite being undetectable (other than by genetic testing) for decades.

I suppose it's possible, perhaps likely, that there are different forms of what we label "autism," and some forms may be triggered by environmental factors. But even those cases likely have some underlying genetic vulnerability.

I wasn't aware of the type of folate deficiency that may occur in certain individuals (again, genetically determined), in which certain types of folate can't be metabolized and block folate receptors.

DP. There are decades of research on the prenatal environment and autism risk. Numerous autism/identical twin studies. Cerebral folate deficiency is a thing that exist. There are many other factors which are not purely genetic. Also the sheer volume of genes that have been identified as moderate impact for developing autism. Just because you hate RFK jr doesn’t make you any more informed than he is. Many people on here have autistic kids and have worked with geneticists and participated in research and actually read the studies as opposed to reading a few articles summarizing it written by people who majored in English.

Honestly I find this whole thing a bit of a nothing after he hyped up how he was going to blow the lid of this autism thing.

I don’t think there’s any lid left to blow, those of us that are in the field understand there’s a range of contributing factors and things like medications and yes even vaccine ingredients and other chemicals etc are possible environmental contributors along with genetic components. All these things have been known since at least the 90s, probably before that.

I think RFK’s job will be informing the masses and cleaning up research to minimize data suppression and hopefully eliminate some of the problems with research efficacy and conflicts of interest.

Hopefully in 10 years none of this will be taboo to talk about, parents and physicians will be better informed and understand environmental and genetic risks, and they will be able to recognize early signs and know how to gain access to early intervention and childhood services. Hopefully we can get improvements in adult services too as those are lacking.

Such DUMB statements. Please explain what early interventions are helpful for autism. Parents with autistic children really want to know about these imaginary interventions. Are you saying autism can be cured with these magical interventions? Please elaborate.

What the hell does your comment about RFK's job being "informing the masses" and "cleaning up research" mean? The man is neither sane nor intelligent enough to do either. He clearly will increase data suppression.

Initial poster here is correct. The second poster, not so much.
Most people understand that this is a multifactoral factor that includes genetics and environmental triggers. Also, the growing research for early intervention is very positive, but no it does not cure autism.

If you don’t think that research has been impacted by politics and especially Fortune 500 companies for decades, you are the problem.

Ok … How do you think what RFK is doing is helping?

RFK Jr Mr Brain worm would not know one thing about science. He is a heiron addict for god's sake.

DP. The position is an administrator not a scientist position. The previous person in his role was also a lawyer. I think that you can definitely make a lot of valid criticism about how he is managing his job and the personnel losses but understanding science has not really been a requirement.

How much of the stuff listed in that report was already being studied at NIH or through NIH grants?

Anonymous wrote:Did anyone read this yet?

https://www.documentcloud.org/documents/26086948-maha-strategy-report/

You shouldn't. Not everything is insane, but the bad parts will do more harm than the rest of it will do good. Everyone should ignore it.

Did anyone read this yet?

https://www.documentcloud.org/documents/26086948-maha-strategy-report/

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I really want to know what people think are the “Fortune 500” “big money” “Pharma” interests that have somehow captured autism research. As much as I hate PE taking over ABA centers, at least that’s one way families are getting direct services. If PE wanted to find major studies on early interventions I’m not sure I would be mad about that.

They aren't which is why you haven't heard about folinic acid.
Do you know who would really benefit? The wine industry. A half glass of wine crossing the placents is likely better for a developing fetus than an adult dose of Tylenol. But there are no studies to prove that except that when your grandma was having her wine, there wasnt an explosion of severe autism.

Is there an “explosion of severe autism”?

I would call it more of a hockey stick shaped increase