What changes should happen in the HHS?
post by ChristianKl · 2024-11-20T11:04:01.778Z · LW · GW · No commentsThis is a question post.
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Answers 3 IrenicTruth 3 tailcalled 2 AnthonyC None No comments
Currently, it looks like Robert F. Kennedy Jr. will become HHS secretary and change a lot of things at the HHS. There will likely be both good and bad changes.
It's a time when the ideas that lay around matter. What changes do you think should be made? What clever policy ideas should be adopted?
Answers
- If a product derives from Federally-funded research, the government owns a share of the IP for that product. (This share should be larger than the monetary investment in the grants that bore fruit since the US taxpayer funds a lot of early-stage research, only a little of which will result in IP. So, this system must account for the investments that didn't pan out as part of the total investment required to produce that product.)
- Fund grants based on models of downstream benefit. Four things that should be included as "benefits" in this model are increased health span, increased capacity for bioengineering, an increased competent researcher pool, and a diverse set of researchers. Readers from backgrounds like mine may balk at "diversity" as an explicit benefit; however, diversity is vital to properly exploring the hypothesis space without the bias imposed by limited perspectives. Edit: see the replies for a discussion of what I mean by diversity.
- Classify aging as a disease/disorder for administrative purposes. Set the classification to be reviewed/revised in 20 years after we have a better picture. (Whether it should be considered a single disease from a reality-modeling perspective is uncertain, but being able to target it in grants will give us more research that will help us model it better.)
- Encourage inclusionary zoning at a Federal level.
- Create a secure government-wide password manager. (If necessary, the HHS is large enough to do this alone, but the benefit would scale if used by other agencies.) Currently, HHS passwords may not be placed in password managers, leaving the HHS open to phishing credential stealing attacks. The project could be open-sourced to allow private firms to benefit from the research and engineering.
- Make all health spending tax-deductible, whether or not it is funneled through an insurance company. (This is probably the domain of Congress, but maybe there is something HHS can do.)
- Reduce the bureaucracy/red tape for TANF recipients.
- Combine FEMA and ASPR
- Work with the Census Bureau to collect and publish statistics on human flourishing in the US and push/advertise to make those numbers top-line numbers that the electorate (and thus politicians) pay attention to. Improving these statistics can be a "benefit" in the grant funding proposal above. HHS can also work to create conditional markets to predict how different decisions will affect those statistics.
↑ comment by ChristianKl · 2024-11-20T17:47:18.631Z · LW(p) · GW(p)
Readers from backgrounds like mine may balk at "diversity" as an explicit benefit; however, diversity is vital to properly exploring the hypothesis space without the bias imposed by limited perspectives.
There are different kinds of diversity.
It seems to me like the decision of the Ida Rolf Foundation to start funding research had good downstream effects that we see in recent advances in understanding fascia. That foundation being able to fund things that the NHI wouldn't fund was important. Getting a knowledge community like the Rolfers included in academic researchers is diversity that produces beneficial research outcomes.
If you follow standard DEI criteria, it doesn't help you with a task like integrating the Rolfing perspective. It doesn't get you to fund a white man like Robert Schleip.
I would suspect that coming from a background of economic poverty means that you likely have less slack that you can use to learn about knowledge communities besides the mainstream academic community. Having the time to spent in relevant knowledge communities, seems to me like a sign of economic privilege.
Maybe, you could get something relevant by focusing on diversity of illness burden within your researcher community as people with chronic illnesses might have spent a lot of time acquiring knowledge that produces useful perspectives, but I doubt that standard DEI criteria get you there.
Replies from: IrenicTruth↑ comment by IrenicTruth · 2024-11-27T00:09:00.321Z · LW(p) · GW(p)
If you follow standard DEI criteria, I'm commenting on LessWrong; I don't do "standard."😉
More seriously, I apologize. I should have clarified what I meant by diversity. In particular, I mean that diverse groups are spread out in a parsimonious description space.
A pretty detailed example
As a concrete example of one understanding that would match my idea of diversity, consider some very high-dimensional space representing available people who can also do the work measured on as many axes as you can use to characterize them (characteristics of mind, body, experiences, etc.) and reduced by a technique to cause the remaining dimensions to give little mutual information about one another. Define a "diversity-growing procedure" for adding members to be one that chooses new members farthest away from the current subset. The more ways a diversity-growing procedure would choose a particular group, and the fewer exceptions that need to be made to the procedure to end up with that group, the more diverse the group.
Making an instance of this concrete example, imagine that our parsimonious space is 2D and that candidates are at all integer intersections of (0,1,2,3,4) x (0,1,2,3,4). If we choose candidates (2,2),(0,0), and (2,4), how diverse is that group? If you start with (0,0), the farthest away is (4,4), so you'll need to make an exception to add (2,4) (the farthest actually in the group). From (2,4), the farthest away is (0,4); once again, we need an exception to add (2,2). If we start with (2,2), then (0,0) is one of the farthest away, but we need an exception to add (2,4). The sequence (2,4) -> (0,0) -> (2,2) requires one exception. So, we have three ways with five exceptions. (I may have gotten some of this wrong since I did it in my head, but I think this gives the picture.)
This is just one example. Many ways to define diversity match my intuition of spread in a parsimonious description space.
A note on parsimony
Since we're looking for diversity to help us in a particular context, we should choose dimensions that predict differences in that context. For example, a characteristic like "ability to roll your tongue" is probably less predictive of behavior in a research environment than gender, so we might want to down-weight it. However, we don't have good models of what matters yet, so it might be hubris to down-weight characteristics until we know they don't matter for covering research hypothesis space because we've determined the effects by looking at groups actually doing research.
Replies from: ChristianKl↑ comment by ChristianKl · 2024-11-27T17:27:46.375Z · LW(p) · GW(p)
If you promote "diversity" then you have not only take in mind what you mean with it, but also how policy is likely going to work in practice.
In practice, there are some dimensions that are easy to measure like race and gender. There are other dimensions that are harder to measure. Some dimensions are also not conducive to research progress. Researchers with IQ under a hundred are underrepresented in grant giving.
Then there are variables like vaccination status, where being unvaxxed does not result in you having a worse ability to do research in the same way as having a lower IQ but there are perspectives on medical research that will correlate with vaccination status.
If your policy tries to increase the representation of unvaxxed researchers, that might be threatening to hegemonic beliefs and thus a research bureaucracy likely prefers increasing representation of minority races that are unlikely to threaten any hegenomic beliefs.
If you don't specify the dimensions, the dimensions that are going to selected are most likely those that don't threaten hegemony of current opinions and thus the dimensions that are least likely to actually matter for diversity of ideas and the selected dimensions might even be chosen to strengthen the hegemony of the existing ideas.
If you actually want real diversity by doing things like calling for diversity in vaccination status you should do that explicitly.
↑ comment by ChristianKl · 2024-11-20T19:16:12.934Z · LW(p) · GW(p)
If a product derives from Federally-funded research, the government owns a share of the IP for that product.
How would you do that in practice? Is it a matter of adding a standard paragraph to NIH grants?
Replies from: IrenicTruth↑ comment by IrenicTruth · 2024-11-27T00:15:58.526Z · LW(p) · GW(p)
Is it a matter of adding a standard paragraph to NIH grants? Yes. That's what I was thinking of.
I like vaccines and suspect they (or antibiotics) account for the majority of the value provided by the medical system. I don't usually see discussion of what can be done to promote or improve vaccines, so I don't know much about it, but the important part is they remain available and get improved and promoted in whatever ways are reasonable.
Beyond that, a major health problem is obesity and here semaglutide seems like it would help a lot.
↑ comment by ChristianKl · 2024-11-20T12:40:15.501Z · LW(p) · GW(p)
Saying "whatever ways are reasonable" is ignoring the key issues.
Robert F. Kennedy Jr. believes that all vaccines should require placebo-blind trials to be licensed the most other drugs do.
Whether or not that's reasonable is the key question.
Beyond that, a major health problem is obesity and here semaglutide seems like it would help a lot.
Do you believe that Medicaid/Medicare should just pay the sticker price for everyone who wants it?
Replies from: InvertVirologist↑ comment by InvertVirologist · 2024-11-20T14:26:58.000Z · LW(p) · GW(p)
Can you name a vaccine currently on the market which has not undergone testing in a study with a randomized, double-blind placebo-controlled design? I am not sure why RFK Jr.'s belief on the subject should be taken seriously.
Replies from: ChristianKl↑ comment by ChristianKl · 2024-11-21T00:25:59.103Z · LW(p) · GW(p)
The current establishment position is that it's unethical to run randomized, double-blind placebo-controlled trials for vaccines if there's already an existing vaccine on the market that targets a given illness. Instead, new vaccines for illnesses with existing vaccines get tested against an existing vaccine. In practice, most of the commonly used childhood vaccines in the United States fall under that category.
Those are just the basic facts of the issue whether or not you like RFK Jr. The more interesting question is about whether his policy demand of requiring randomized, double-blind placebo-controlled trials for each vaccine is one that should be adopted or not. And if it gets adopted what happens with existing vaccines that fail that standard.
Replies from: InvertVirologist↑ comment by InvertVirologist · 2024-12-03T15:44:23.472Z · LW(p) · GW(p)
Yes, that's the standard because the existing vaccine for a given illness that the new candidate is tested against has already undergone randomized, double-blind placebo-controlled trials. Meaning it was proven to be safe and effective against a placebo and, therefore, is the new standard. This makes sense ethically and scientifically.
This isn't about liking or disliking RFK Jr. It's about not trusting an anti-vaccine activist to shape vaccine policy using evidence-based reasoning instead of his distrust of scientists.
Replies from: ChristianKl↑ comment by ChristianKl · 2024-12-03T16:49:36.872Z · LW(p) · GW(p)
This isn't about liking or disliking RFK Jr
If you care about evidence, how about starting with acknowledging that the answer to your first question about why one would believe RFK Jr is that because he's factually correct with the claim that no randomized, double-blind placebo-controlled trials for vaccines are run?
You seem to have had a false belief that needs updating, and if you just gloss over that, that's not good reasoning.
The key question is about what policy you want. Given what RFK Jr. said, it's likely that the policy he is going to advocate is some form of a requirement of randomized, double-blind placebo-controlled trials for vaccines.
Currently, the reasoning of why there's no randomized, double-blind placebo-controlled trials for vaccines has nothing to do with evidence-based reasoning but with a mix of a certain medical ethics and pharma lobbying.
Meaning it was proven to be safe and effective against a placebo and, therefore, is the new standard.
Safe is a relative term and you are using the term "proof" quite losely.
Vaccines are by law unavoidably unsafe, which is the legal justification from the 1986 National Childhood Vaccine Act for giving the producers immunity from lawsuits over the vaccines. The whole idea at that time is that vaccines have some side effects but the benefits outweigh the risks. The vaccines from that era are the one's that are used in the controlled studies. HHS did not follow the law to report on the progress on how vaccines got more safe after that in the way the act requires.
In medicine, it frequently happens that drugs have side-effects that were not picked up in initial clinical trials, so obviously if you follow evidence-based reasoning, a trial does not proof anything absolutely safe. As a relevant recent example, the increased risk of myocarditis and pericarditis from mRNA Covid-19 vaccines was not picked up by the placebo-controlled trials that they ran.
evidence-based reasoning instead of his distrust of scientists
Distrust of scientist was part of the motto of the Royal Society. When studying bioinformatics one of my professors made a point to say something in every lecture to foster our distrust. The replication crisis of the last decade was inherently about distrust of scientists and one of the greatest things that happened to science in that timeframe.
Saying scientists who are not running enough placebo-controlled trials should be distrusted, is an evidence-based argument. Ideally, there would be meta-science that better tells us when we need to to run placebo-controlled trials and when we don't but the NIH under past leadership did not like to fund that meta-science.
Policy-wise, I think that focusing on standards of evidence is the most likely choice he could make as HHS secretary because he's unlikely able to just declare certain vaccines he doesn't like to be off-the-shelves.
So if you want an evidence-based discussion it makes sense to focus on the merits and costs of placebo-controlled trials.
Replies from: InvertVirologist↑ comment by InvertVirologist · 2024-12-03T23:29:42.180Z · LW(p) · GW(p)
>s that because he's factually correct with the claim that no randomized, double-blind placebo-controlled trials for vaccines are run
This is factually untrue. Here are just a few recent examples:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00241-5/fulltext
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30843-4/fulltext
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30001-3/fulltext
Or if you'd like one that's more relevant to recent history:
https://www.nature.com/articles/s41541-022-00590-x
https://www.acpjournals.org/doi/full/10.7326/M22-1300
This last one is not reporting on the vaccine trial, but is a follow-up to such a trial.
So, at this point, it's difficult for me to feel like you're having this conversation in good faith. But, nonetheless, ethically and medically, the appropriate and most relevant control is the standard of care - because we need to know if the novel vaccine/medicine/therapy outperforms what we are already doing. And, again, the standard of care is adopted after a randomized, double-blind placebo-controlled trial, or after replacing the previous standard of care that underwent such a trial. So, in reality we should be questioning his reasoning and motivation for making this false claim and using it as a bludgeon to shape vaccine policy.
>Vaccines are by law unavoidably unsafe
Speaking of using terms loosely... I'll just parrot you and say "unsafe" is a relative term and I think it's doing a lot of rhetorical heavy lifting here. Sure, they are "unsafe" in the way that any action or inaction is nominally "unsafe".
>You seem to have had a false belief that needs updating, and if you just gloss over that, that's not good reasoning.
This is needlessly antagonistic given that you are repeating an outright false claim that "no randomized, double-blind placebo-controlled trials for vaccines are run".
I've never made any claims about "absolute safety". This line of attack by you feels, at best, like putting words into my mouth when I would prefer you simply ask a question about my position on something instead of assuming. I am aware that medicine comes with risks but it seemed tangential to the conversation at hand and so I made the reasonable assumption that "safe relative to the standard of care" was mutually understood. Apparently that assumption was wrong - but that doesn't justify your strawmanning.
>As a relevant recent example, the increased risk of myocarditis and pericarditis from mRNA Covid-19 vaccines was not picked up by the placebo-controlled trials that they ran.
Because it's an incredibly rare side-effect that nearly invariably self-resolves. And the side-effect was picked up in follow-up, which is exactly why scientists continue to monitor vaccine recipients.
>Saying scientists who are not running enough placebo-controlled trials should be distrusted, is an evidence-based argument.
No. It is not. It is bad science to run a placebo controlled trial when an effective standard of care is already available. The medically relevant question is whether a new drug or therapy is safe and effective relative what what we are already doing.
Replies from: ChristianKl↑ comment by ChristianKl · 2024-12-04T01:37:57.950Z · LW(p) · GW(p)
Okay, my statement as far as "no trials" was imprecise, I did explicitly talk about the COVID-19 trials, so I did grant that there are trials that happen. The just don't happen for most vaccines as most vaccines are controlled against previously licensed vaccines.
Because it's an incredibly rare side-effect
A quick search suggests 1/10000 as a current official number. Do you consider 1/10000 incredibly rare?
I've never made any claims about "absolute safety".
People who want to decide whether or not to take a vaccine care about absolute safety and not about relative safety between different vaccines.
Sure, they are "unsafe" in the way that any action or inaction is nominally "unsafe".
They are unsafe in a way that warrants their producers being held not liable for the damages caused by them to set incentives to minimize damages. The assumption here is that the cost of paying for an insurance policy that adequately pays for the damage is too high to burden the producers of vaccines with it.
There are few cases where we say as a society that things are so risky that we need to shield a company from the harm that their products might produce.
There's a reason that prediction markets are popular on LessWrong. They are a tax on bullshit. A requirement to have insurance policies is in the same way a tax on bullshit. "Unavoidably unsafe" is about unwillingness to pay that tax.
The medically relevant question is whether a new drug or therapy is safe and effective relative what what we are already doing.
That's relevant for people who want to decide about whether to take the old or the new vaccine. To the person who wants to make a decision between taking no vaccine at all or the new vaccine, evidence that compares the new vaccine against no vaccine is relevant.
__________
But let's focus more on the meat of the issue. What makes you confident that the current system is effective at finding all side-effects that exist of vaccines?
Is it that you decided beforehand that "distrust of scientists" is bad and therefore you trust the output of the system? Otherwise, what process did you went through to develop your trust that this particular system works very well?
↑ comment by IrenicTruth · 2024-11-20T14:33:33.703Z · LW(p) · GW(p)
[I] suspect [vaccines] (or antibiotics) account for the majority of the value provided by the medical system
Though I agree that vaccines and antibiotics are extraordinarily beneficial and cost-effective interventions, I suspect you're missing essential value fountains in our medical system. Two that come to mind are surgery and emergency medicine.
I've spoken to several surgeons about their work, and they all said that one of the great things about their job is seeing the immediate and obvious benefits to patients. (Of course, surgery wouldn't be nearly as effective without antibiotics, so potentially, this smuggles something in.)
Emergency medicine also provides a lot of benefits. Someone was going to die from bleeding, and we sewed them up. Boom! We avoid a $2.5 million loss. Accidental deaths would be much higher in the US without emergency medicine personnel.
Another one to look into would be perinatal care. I haven't examined it, but I suspect it adds billions or trillions to the US economy by producing humans with a higher baseline health and capacity.
I think our collective HHS needs are less "clever policy ideas" and more "actively shoot ourselves in the foot slightly less often."
↑ comment by ChristianKl · 2024-11-20T12:56:23.097Z · LW(p) · GW(p)
To the extent that our needs are "actively shoot ourselves in the foot slightly less often", there's the question of why we currently shoot ourselves in the food. I suspect it's because of the incentives that are produced by the current policies.
Replies from: AnthonyC↑ comment by AnthonyC · 2024-11-20T13:36:53.789Z · LW(p) · GW(p)
This is true. But ideally I don't think what we need is to be clever, except to the extent that it's a clever way to communicate with people so they understand why the current policies produce bad incentives and agree about changing them.
Replies from: ChristianKl↑ comment by ChristianKl · 2024-11-20T19:21:06.376Z · LW(p) · GW(p)
If that's your theory of change, how do you think that communication should work? Who could be tasked with creating the right communication so that it will work?
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