I get paid for this trial every time I visit the office, and I tell you, it makes me feel dirty. (Not so dirty that I’ll donate the money to a cause.) The researcher who presents the checks keeps assuring me that it is in compensation for my time, but I spent far more time in the fingolimod / Gilenya trial and got no checks.
I want to feel virtuous and useful. And altruistic. However, as I told the researcher, I am cashing that check immediately.
This led to a conversation about Jonas Salk not patenting the sun, and I had no idea that he couldn’t have patented the polio vaccine even if he wanted to. (Because supposedly it wasn’t unique enough. I guess like the covid vaccine, everyone was pitching in to find it.)
And then that led to insulin. The insulin inventors said their drug belonged to the people years before Salk said the same about the polio vaccine, sold their patent to the university where they worked for a dollar, and then things fell apart from there.
Those patents started expiring recently, which might be why Biden’s first ten drugs slated for price negotiations include diabetes drugs.
I still like the stories of altruism, even if they are just stories.
18 responses to “Trial Money”
There is a lot of altruism out there, even though it is mostly quiet and small. But yes, there is also extremely strong, prolific evidence of original sin…
KC – probably not the doctors but the money-making enterprises like the universities and hospitals they are affiliated with
Every once in a while, some of the greed is technically doctors (or ?doctors? like Dr. Oz), but yep, mostly not actual doctors, who are more likely to be interested in additional prestige/fame or helping people than in additional money. (I think part of that is what kind of people become doctors plus the training plus the socialization, and part of it is that once you are a doctor in a big-shot-enough-to-make-discoveries place, you realize that you have more money than time by… a fairly long shot.)
(but, like, all the “doctors” who are putting their diplomas up to be shills for fake “the medical profession doesn’t want you to know this easy solution for weight loss [or other thing people are desperate for a fix for] you can buy from us” things: bad news bears.)
KC – I am always so horrified by those late night infomercial doctors. What happened to them? Are they just desperate to pay off their student debt?
Some people are probably scummy and always have been; some are probably desperate. I don’t know how many of them have Problems like addiction or malpractice things preventing them from working as doctors. It’s also possible to just get… in a crowd of people and lose track of what’s actually acceptable behavior – maybe excusing yourself by reminders of how positively strong the placebo effect is, etc., and if I don’t do it, someone else will and will get this chunk of money, etc.
There is also a weird thing where sometimes a legitimately good doctor will go to start an independent practice which does not accept insurance because the condition they’re treating needs more time than insurance will allow per patient, and then they get isolated because 1. they’re not in a research group any more and 2. doctors have a thing against doctors who don’t take insurance and who don’t have much oversight, and then they develop a savior complex and get too confident that *their* method can fix it *all* – instead of keeping the “my method helps 20% of people with this condition, so it’s worth a try, but the patient is not to blame if it doesn’t work for them” perspective, and thus don’t want to hear about lack of results so people don’t tell them and they believe harder and it goes downhill.
I don’t think *every* independent-practice no-insurance clinic goes vaguely culty like that, but it’s definitely a weird set of pressures, and human beings need continued accountability and pressure towards good things, not bad things…
KC – I did encounter a eye doctor intent on selling me his very specific brand of vitamins.He seemed quite committed to them.
…yeah. I had a doctor for a while who got a commission for a line of supplements and… no. I have no doubt most doctors think they can manage to only suggest that brand to people for whom that brand would truly be best, but it’s hard to maintain a fully objective perspective when there are extra factors at play. (I mean: it’s hard to maintain a fully objective perspective on something you’re excited about even if you’re *not* getting some money for recommending it! No matter how much I know that there is no one silver bullet for everyone’s health woes, every time I find something that at least sort of works on the more-intractable of problems, I slide into “oh, but *this* is maybe the silver bullet” territory unless I smack myself pretty hard and repeatedly until it wears off.)
KC – You have to wonder how much the placebo effect is increased when your trusted doctor recommends something.
It might depend on whether you ask which supplements this company is particularly good at or the best at, and the doctor replies with “oh, they’re basically the best on the market for all of them” in which case the trusting-this-supplement-to-be-especially-good expectation dies a sudden death, because no, if that were true, we would have heard of this company before. (and also some supplements it’s just really hard to mess up, so *everyone’s* is about the same. and others are individual-specific as to what is best or best-absorbed, so different people have different brands work better for them.)
But yes, probably in general the placebo effect for supplements is boosted if the doctor successfully communicates belief in their efficacy!
KC – How would you even know if a supplement is being absorbed? Sound like a job for confirmation bias.
The actual answer to “how would you even know?” for, at least, some things: poo tests. On a controlled diet, you do a crossover study and tally up how much is… deposited… vs. not-deposited. The weirdest one I’ve read is the “which uncooked starches are absorbed by the body?” test that was clearly designed and implemented before some of the current IRB standards were in place…
For other things, they can look for levels in the blood and/or urine. and every once in a while they use radioactive tracing, although usually not for the sort of thing we usually think of as supplements! There’s also the thing where vitamin D3 is more effective than D2, although I don’t remember how they figured that out…
KC – interesting.
Obviously, most supplements don’t bother with any of this and work exclusively by theory or anecdote, because science is 1. expensive and 2. often disproves what you’re trying to sell. But some things can actually be tested by before/after levels in the body or by input/output. 🙂
(but seriously, the “Experimental Frozen Pudding” recipe on page 2 of the 1920s study on the digestibility of raw starch: WHEW. and the fact that the current estimated upper tolerated limit on raw potato starch is 45g but they fed these kids over 600g: WHEW. and the fact that all the subjects had really bad GI experiences on the raw potato starch AND YET two of them signed up to repeat the test despite the cramps and bloating and diarrhea: WHEW. I would love to know if that was “really values science” or “can’t say no to a professor” or “they were paying us, okay, and I needed the money.”)
Obviously, most supplements don’t bother with any of this and work exclusively by theory or anecdote, because science is 1. expensive and 2. often disproves what you’re trying to sell. But some things can actually be tested by before/after levels in the body or by input/output. 🙂
(but seriously, the “Experimental Frozen Pudding” recipe on page 2 of the 1920s study on the digestibility of raw starch: WHEW. and the fact that the current estimated upper tolerated limit on raw potato starch is 45g but they fed these kids over 600g: WHEW. and the fact that all the subjects had really bad GI experiences on the raw potato starch AND YET two of them signed up to repeat the test despite the cramps and bloating and diarrhea: WHEW. I would love to know if that was “really values science” or “can’t say no to a professor” or “they were paying us, okay, and I needed the money.”)
(sorry for the double-post! There was a page glitch.)
KC – way more than a page glitch: Typepad was down for me all day yesterday. I know they haven’t taken new customers for years. If the BBC didn’t use them for their blog I din’t know if they’d still exist.
Hm. Can anything else take exports from Typepad? Although yes, as long as the BBC is using Typepad, it should continue to be maintained to some degree… but I’d download the entire blog archive, if you can, just in case!
KC_ i download everything every six months or so.