14 ms·

What if mega-rich people could buy places on clinical trials?

65 points by ORioN63 12y ago

homulilly 12y ago
I'm sure trickle-down medicine works just as well as trickle-down economics. Which is to say it wont, except for the rich people buying their way into clinical trials, of course.
- cecilpl 12y ago
  Did you even read the article?
  - coldtea 12y ago
    I bet he did. Do you have experience with how these things turn out to work in real life?
- zanny 12y ago
  If you abolished drug patenting, then if the elite want to foot the bill on drug research, it is only a net positive. It seems like no matter who you are, you have the commonality in death. I'm surprised more of the billionaires of the world aren't investing in curing it in all its myriad forms, considering their risk of succumbing to it at some point. The dark side of course being that clinical trials become the fast lane for the rich to drugs that will save their lives but never reach the commoners cold. But if you got rid of the medicine patents, then once the drug hits market anyone can duplicate it.
  - dec0dedab0de 12y ago
    It seems like no matter who you are, you have the commonality in death. I'm surprised more of the billionaires of the world aren't investing in curing it in all its myriad forms Before they do that they better stop birth, because we would have some serious problems on our hands.
    - adventured 12y ago
      The exact opposite would occur. If everyone on earth started living to 400, the world's population would rapidly shrink. If you brought the bottom ~2 billion up to the median global living standard, the total human population would begin to contract due to the reduction in new births brought on by the higher standard of living. If you reach an income level on par with poor Eastern European nations ($10k to $15k), you start to see a decline or flattening in population. With accidental deaths, and the huge drop in new births, it wouldn't take very long - relative to the new life expectancies - to cut the population of the planet in half. If all people stopped dying at 65, and say lived to 400, the wealth accumulation would be substantial for most of the poorest (which currently reside in China and India). Their standard of living would skyrocket, as they'd have perhaps 300 good working years. Those 1.5+ billion poor living in China and India would also likely live long enough to see the conditions of the poor in said countries improve immensely. Not to mention the remarkable breakthroughs in technology / medicine that would occur during their lifetimes, a further multiplier lifting them up out of current levels of poverty.
      - jboy 12y ago
        I have to disagree with your conclusion for several reasons: 1. Living longer doesn't mean your standard of living will rise. Even if you work longer, you will not necessarily accumulate significantly (or perhaps even any) more wealth. And if you are in poverty currently (ie, effectively earning nothing), multiplying that by another 300 years still leaves you with zero. 2. If there is any change to the accumulation patterns of money, I would suspect that either the rich would get (individually) richer -- or perhaps more money would be printed, thus de-valuing the existing money. 3. Being at the median global living standard does not guarantee that you will produce fewer children. For example, there are many people in Western countries who for religious reasons continue to produce large families. More time for them would presumably result in even larger families. 4. In fact, Africa is particularly interesting, because its birth rate is NOT dropping as fast as predicted due to economic development: http://www.economist.com/news/leaders/21598648-birth-rates-are-not-falling-africa-fast-they-did-asia-more-contraception-would http://www.economist.com/news/leaders/21598648-birth-rates-a...
wyager 12y ago
I think it's absurd that people are legally prevented from purchasing drugs that haven't been FDA approved. I think it is reasonable to e.g. force companies to put "Not FDA approved", but I don't think it's reasonable to preclude sale at all. There are a number of medical treatments that have been proven safe to EMA (the European version of the FDA) standards, but were either mired for further years in the FDA approval process or were never approved at all due to the increased complexity and cost of the FDA approval process. Take a look at http://www.bioworld.com/content/ema-trounces-fda-2013-drug-approval-tally-81-vs-27 http://www.bioworld.com/content/ema-trounces-fda-2013-drug-a... to see the disparity. The argument I always hear against allowing people to purchase drugs that haven't been officially approved by whatever agency has jurisdiction over the patient is "But what if some unscrupulous drug salesman bamboozles them into buying snake oil?". It seems to me that the existence of the FDA, EMA, and any number of other national and private certifying bodies is more than sufficient to allow people to make an informed decision for themselves. I think that any argument for drug decriminalization or bodily sanctity can be applied in favor of allowing people to choose what drugs they wish to consume (even though some people will make unwise choices).
- WalterBright 12y ago
  A straightforward approach is that legally consenting adults can use non-FDA approved drugs if they sign a consent form specifically acknowledging that a drug is not approved by the FDA. Heck, require it to be notarized. A carrot to get FDA approval for a drug can be that the drug maker is shielded from liability for side effects of the drug. (Of course, the shield wouldn't apply if the drug maker misrepresented the drug during the approval process, or did not make the drug correctly.)
- deleted 12y ago
  [deleted]
- serf 12y ago
  > I think it's absurd that people are legally prevented from purchasing drugs that haven't been FDA approved. They aren't. In the U.S. they are prevented from purchasing certain drugs without the advice and consent of a prescribing physician. The prescribing physician can be on-board for the use of non-FDA approved meds, it's just uncommon. source : personal anecdote. I used 4-Aminopyridine[0] with the consent of my doctor within the US before clinical trials began as a 'research tool' for insights into a medical condition. It was dispensed by a medical chemistry lab under the consent of my physician, and paid for out of pocket. [0]: http://en.wikipedia.org/wiki/4-Aminopyridine http://en.wikipedia.org/wiki/4-Aminopyridine
Havoc 12y ago
Could work, but its playing with fire.
tempestn 12y ago
It's unfortunate that this kind of innovative idea seems to elicit a knee-jerk negative response in terms of ethics. (To the extent where even the person having the idea initially assumes it must be unethical!) Certainly it shares characteristics with unethical scenarios - a rich person buying a spot on a donor list, forcing others to wait longer for instance. But this particular idea seems to leave no one worse off, and many people considerably better off. Of course, it would be ideal if resources were simply abundant and all these trials could be funded without giving special treatment to wealthy donors. But given that we don't live in that world, I would certainly rather see one wealthy donor and nine other individuals (for example) get access to a potentially life-saving therapy than to have them all die in the name of equality.
- coldtea 12y ago
  >It's unfortunate that this kind of innovative idea seems to illicit a knee-jerk negative response in terms of ethics. Why, why let ethics mess up a perfectly profitable business idea? >Of course, it would be ideal if resources were simply abundant and all these trials could be funded without giving special treatment to wealthy donors. I don't think it's about resources, it's about their distribution. Such trials CAN be funded "without giving special treatment to wealthy donors" -- we're spending trillions more giving special treatmeants to wealthy people,(such as bailouts).
  - tempestn 12y ago
    My point was that it isn't unethical; people just instinctively assume that it must be. I'm not going to argue the public policy motivation behind bailouts as we could go on quite a tangent there, but the fact is that many clinical trials go unfunded. Obviously money exists somewhere, and the government could unilaterally decide that it's more valuable to fund clinical research than to bail out failing companies (or buy F35s, or build schools, or whatever). Thus far they haven't done so. This plan, on the other hand, could actually start saving people's lives immediately.
- cbd1984 12y ago
  > It's unfortunate that this kind of innovative idea seems to illicit a knee-jerk negative response in terms of ethics. It's a shame that autocomplete can still elicit laughs. I like to think about it in another way: If poor people were given preference in terms of going on drug trials, would the same groups be up in arms about the poor being used as guinea pigs for the rich?
jboy 12y ago
The Dating Agency model discussed by the author is interesting, and I'm impressed that he went to the effort of discussing the idea with ethicists, lawyers and entrepreneurs (and of course, scientists). > Every year, an untold number of potential new drugs or interventions, any one of which might go on to improve thousands of lives, are thrown away without being tested in humans. It is a matter of funding, not science: there is not enough money in the public or private sector to run clinical trials on every exciting proposal that comes out of research labs. Thinkable.org is a recently-launched crowdfunding platform for cutting-edge scientific research: http://thinkable.org/discover http://thinkable.org/discover Similar to the article's Dating Agency model, Thinkable does review the campaigns before listing them publicly: "Dr McNeil said Thinkable would only allowed researchers affiliated with accredited research organisations to use the site and any funds donated would be managed by the organisation to ensure they were used for research." [1] Thinkable doesn't appear to allow you to buy early spots in the clinical trial queue, but it certainly seems that they want to ensure that important science research won't be lost between the cracks due to a lack of funding. A more democratic approach to funding scientific research, in contrast to the plutocratic approach discussed in the article. [1] http://www.smh.com.au/technology/sci-tech/young-scientists-use-crowd-sourcing-to-fund-their-research-20140804-zzs0y.html http://www.smh.com.au/technology/sci-tech/young-scientists-u... Edit: I temporarily removed my point about Thinkable being a democratic approach, because in retrospect it seemed a trivial & obvious observation, until I saw that wyager had just replied to that point specifically!
- wyager 12y ago
  >Thinkable is a more democratic approach Pedantically, it's a more market-oriented approach. A democratic approach would be if everyone got one vote (not proportional to how much money they were willing to risk), and voted on which drugs they thought should get funding, and the rest got nothing. Forgive me, this is a personal pet peeve of mine :)
  - jboy 12y ago
    OK, you make a fair point. :) The difference between one-vote-per-person and a vote proportional to the amount of money you are willing to risk, is a significant one. So I suppose Thinkable is halfway between the plutocratic and democratic approaches? As an aside (tangent to your comment about the rest getting nothing), I don't know what Thinkable does if a campaign doesn't reach its funding target: Whether the money is restored to the sponsors or the researchers simply have to work on a smaller budget (maybe once a minimal funding threshold is passed).
cinquemb 12y ago
Things like this make me wonder about how we even define drugs. Organizations like the FDA might not approve of people buying their way onto trials for pills that can induce a specific mental state in someone, but if one is in a research lab now working on something similar but with a device, there doesn't appear to be an FDA like organization (yet) that would shut PI's (or current corporations make and sell said devices commercially) down if some wealthy individual decides to fly up every couple of weeks so they can "play", despite the non-zero probability of inducing negative side effects from the states one is potentially trying to induce. Kind of reminds me of in the late 1940's where x-rays machines were used fit shoes… only nearly 2 decades later the Nuclear Regulatory Commission was formed, where its predecessor was more in the business of enabling such endeavors. It seems like people who have access to enough resources and are looking for ways to exchange resources for something they want will find a way if the perceived possibilities are in their field of awareness… no matter any ones understanding of such things. tangent: If we're facing the lag "problem" with purely human behaviors and their externalities, humans approaching the endeavor for AI and AI augmented humans evokes the imagery of pounding ones fists in sand.
maldeh 12y ago
I'm not entirely comfortable with allowing this by policy. I could see this affecting the interpretability of results from such trials in the long run. If there's a rising proportion of mega-rich people in any given study, this could introduce significant sampling biases. Ethnicity, diet, lifestyle, gender - it all factors in and will have to be controlled for appropriately. Another concern is that this could introduce incentives into the eco-system that detract from the primary goal that is to obtain a drug that would be effective for as many people as possible (setting aside drugs with specificity as a goal for a moment). Imagine there's a drug A that happens to show very promising results on caucasians but not so much for africans, and a drug B that has more general effectiveness (hackneyed I know, but please bear with me). While a more impartial set of trials might have wound up selecting drug B (albeit after some passage of time), it's now possible drug A could get fast-tracked to market by virtue of being awash with funding from affluent volunteers while drug B never generates enough monetary interest to make it.
- tempestn 12y ago
  I think this concern was addressed in the article. The more advanced version of the idea would have wealthy donors fund studies, then receive the drug on a compassionate basis alongside the study, rather than actually participating in it. (There was a bit more detail to give the drug companies maximum liability coverage, but that was the basic idea.)
- josu 12y ago
  That's easy to fix, limit the number of places on sale to x% of the total.
- _benedict 12y ago
  Not only has this been addressed in the article, as mentioned by another commenter, but this market place is intended to apply only to Stage I to IIa trials, and currently only non-randomized trials. These concerns, even were they not already dealt with, would be moot as phase IIb and III trials would still need to be done via the normal (even more expensive) mechanism, with larger more robust populations.
jshb 12y ago
So what happened to the 2 million pounds?
emiliobumachar 12y ago
As an aside, I always thought that, while science was expensive, chemicals were cheap. But this article's ballpark figures are about hundreds of thousands of dollars per dose for drug production in small scale. I know it will vary wildly from drug to drug, but, in general, does anyone know if it actually costs that much to manufacture a single dose? Also, what if a rich, terminally sick person decides to break the law and manufacture a promising experimental drug for her own use in her basement? The chemical formula is in the published papers, after all. How many specialists would be needed in the conspiracy?
- ctolsen 12y ago
  The marginal cost of a single dose is probably never very high, unless precursors required are extremely scarce. Still, it wouldn't be in the hundreds of thousands. The cost lies in the development of the drug, plus the ten other drugs that didn't make it to market where R&D costs need to be recouped. And small scale production is naturally more labour-intensive.
- nikanj 12y ago
  It costs that much to manufacture the first doses, as there's a lot of hand crafting and lab work involved. Lab technicians are expensive, and the labs themselves are even more expensive. Later on, the manufacture turns from labour-intensive lab work to something more resembling a factory, and the cost per dose drops dramatically.
- streptomycin 12y ago
  This doesn't really answer your question, but a lot of new drugs are "biologic" drugs which are much more complicated and expensive to manufacture than small chemicals.
healthenclave 12y ago
I would like to shed light on the fact that "The Rich" have already bought up a lot of clinical trials and Medical research in general. If you look at the research done on disease prevalent in Rich population vs prevalent diseases in the poor -- you will see a clear pattern. For example: There are significantly more resources (Time, People and Money) focused on Rare Genetic Diseases such as Cystic Fibrosis (a rare genetic disease in Caucasians) Vs resources to find cure for malaria or better medications (in spite of the growing problem of resistance) Although many of the disease that are more common in poorer people are always linked to socio-economic issues and are not just a disease in themselves. From intestinal parasites to malaria. But not providing adequate resources to all such disease can turn out to be a disaster -- like that happened with US ignoring Tuberculosis as a significant health problem and then subsequent re-emergence of TB due hiv and MDR (drug resistant) forms of TB
- zo1 12y ago
  "I would like to shed light on the fact that "The Rich" have already bought up a lot of clinical trials and Medical research in general." I'd say that's an unfair, and loaded statement to make. "Bought up" is a very loaded term, and suggests bribery and denial of the thing being bought up from the "not-rich" by virtue of it all being taken by the "rich". So, you say there is a "pattern", and that this is somehow the purposeful doing of the rich. With not any proof of wrong-doing, you jump to that conclusion. You don't even posit that maybe it's perhaps researchers go where there is funding, or maybe drug companies find it more profitable to treat diseases that affect the rich, whatever. No. You blame the rich, for essentially having money and spending it on the things that affect them(if we can even make that causal link, but it's more likely indirect as per my alternate suggestions above). So in essence, what you're really bothered by is the fact that the rich don't share your views on what the rich should be spending their money on.
  - healthenclave 12y ago
    I am just making a general statement and I was not accusing a particular group of people, gov or agency in doing so. In a fair world we would allocate funds for medical research based on number of people suffering from illness and not their purchasing power -- but then the world isn't truly fair to everyone. Imagine this were happening inside a country -- a large percentage of population with income below 60K suffered from an particular disease A and a very small chunk of people earning more than 120K suffered from a rare disease B. And everyone including the government decides to fund research on disease B -- won't that be unfair and unjust ?? Also with people shunning vaccines and emerging varied forms of resistance, Disease of the so called "Poor Developing Countries" might come back to haunt the "Rich"
fabian2k 12y ago
Ideas like this seem to me to be often based on a vast overestimation of how likely a drug candidate is to work. Something like 90-95% of drug candidates in the preclinical phase fail. And even if we go to the latest stage, phase III clinical trials, there is still a 50:50 chance that they won't work. Another issue is that the rich people likely wouldn't be happy with the chance that they're in the placebo group. So they probably would have to be guaranteed to get the real drug, outside of the actual trial.
- robbiep 12y ago
  I would have posted the same thing beforehand so I have To ask Didn't read the article?
DanBC 12y ago
Rich people are currently exploited by a range of people selling nonsense. Sometimes those people selling the nonsense know it's nonsense and they're just outright crooks. Often those people genuinely think they have a valid treatment and they're just being ignored because BIG PHARMA[1] or somesuch. Diverting money from those sham treatments into carefully controlled trials seems to be beneficial. [1] It's tricky to argue against some forms of WOO[2] because the behaviour of some pharma companies is so terrible. Only publishing results that show efficacy; fudging the compliance documentation; using dying cancer patients to campaign for changes in prescribing guidelines when the company knows the drug only adds maybe two weeks of poor quality life. [2] Waste Of Oxygen - a useless stupid pointless treatment such as homeopathy.

65 points by ORioN63 12y ago

I'm sure trickle-down medicine works just as well as trickle-down economics. Which is to say it wont, except for the rich people buying their way into clinical trials, of course.

cecilpl 12y ago
Did you even read the article?
- coldtea 12y ago
  I bet he did. Do you have experience with how these things turn out to work in real life?
zanny 12y ago
If you abolished drug patenting, then if the elite want to foot the bill on drug research, it is only a net positive. It seems like no matter who you are, you have the commonality in death. I'm surprised more of the billionaires of the world aren't investing in curing it in all its myriad forms, considering their risk of succumbing to it at some point. The dark side of course being that clinical trials become the fast lane for the rich to drugs that will save their lives but never reach the commoners cold. But if you got rid of the medicine patents, then once the drug hits market anyone can duplicate it.
- dec0dedab0de 12y ago
  It seems like no matter who you are, you have the commonality in death. I'm surprised more of the billionaires of the world aren't investing in curing it in all its myriad forms Before they do that they better stop birth, because we would have some serious problems on our hands.
  - adventured 12y ago
    The exact opposite would occur. If everyone on earth started living to 400, the world's population would rapidly shrink. If you brought the bottom ~2 billion up to the median global living standard, the total human population would begin to contract due to the reduction in new births brought on by the higher standard of living. If you reach an income level on par with poor Eastern European nations ($10k to $15k), you start to see a decline or flattening in population. With accidental deaths, and the huge drop in new births, it wouldn't take very long - relative to the new life expectancies - to cut the population of the planet in half. If all people stopped dying at 65, and say lived to 400, the wealth accumulation would be substantial for most of the poorest (which currently reside in China and India). Their standard of living would skyrocket, as they'd have perhaps 300 good working years. Those 1.5+ billion poor living in China and India would also likely live long enough to see the conditions of the poor in said countries improve immensely. Not to mention the remarkable breakthroughs in technology / medicine that would occur during their lifetimes, a further multiplier lifting them up out of current levels of poverty.
    - jboy 12y ago
      I have to disagree with your conclusion for several reasons: 1. Living longer doesn't mean your standard of living will rise. Even if you work longer, you will not necessarily accumulate significantly (or perhaps even any) more wealth. And if you are in poverty currently (ie, effectively earning nothing), multiplying that by another 300 years still leaves you with zero. 2. If there is any change to the accumulation patterns of money, I would suspect that either the rich would get (individually) richer -- or perhaps more money would be printed, thus de-valuing the existing money. 3. Being at the median global living standard does not guarantee that you will produce fewer children. For example, there are many people in Western countries who for religious reasons continue to produce large families. More time for them would presumably result in even larger families. 4. In fact, Africa is particularly interesting, because its birth rate is NOT dropping as fast as predicted due to economic development: http://www.economist.com/news/leaders/21598648-birth-rates-are-not-falling-africa-fast-they-did-asia-more-contraception-would http://www.economist.com/news/leaders/21598648-birth-rates-a...

wyager 12y ago

I think it's absurd that people are legally prevented from purchasing drugs that haven't been FDA approved. I think it is reasonable to e.g. force companies to put "Not FDA approved", but I don't think it's reasonable to preclude sale at all. There are a number of medical treatments that have been proven safe to EMA (the European version of the FDA) standards, but were either mired for further years in the FDA approval process or were never approved at all due to the increased complexity and cost of the FDA approval process. Take a look at http://www.bioworld.com/content/ema-trounces-fda-2013-drug-approval-tally-81-vs-27 http://www.bioworld.com/content/ema-trounces-fda-2013-drug-a... to see the disparity. The argument I always hear against allowing people to purchase drugs that haven't been officially approved by whatever agency has jurisdiction over the patient is "But what if some unscrupulous drug salesman bamboozles them into buying snake oil?". It seems to me that the existence of the FDA, EMA, and any number of other national and private certifying bodies is more than sufficient to allow people to make an informed decision for themselves. I think that any argument for drug decriminalization or bodily sanctity can be applied in favor of allowing people to choose what drugs they wish to consume (even though some people will make unwise choices).

WalterBright 12y ago
A straightforward approach is that legally consenting adults can use non-FDA approved drugs if they sign a consent form specifically acknowledging that a drug is not approved by the FDA. Heck, require it to be notarized. A carrot to get FDA approval for a drug can be that the drug maker is shielded from liability for side effects of the drug. (Of course, the shield wouldn't apply if the drug maker misrepresented the drug during the approval process, or did not make the drug correctly.)
deleted 12y ago
[deleted]
serf 12y ago
> I think it's absurd that people are legally prevented from purchasing drugs that haven't been FDA approved. They aren't. In the U.S. they are prevented from purchasing certain drugs without the advice and consent of a prescribing physician. The prescribing physician can be on-board for the use of non-FDA approved meds, it's just uncommon. source : personal anecdote. I used 4-Aminopyridine[0] with the consent of my doctor within the US before clinical trials began as a 'research tool' for insights into a medical condition. It was dispensed by a medical chemistry lab under the consent of my physician, and paid for out of pocket. [0]: http://en.wikipedia.org/wiki/4-Aminopyridine http://en.wikipedia.org/wiki/4-Aminopyridine

Havoc 12y ago

Could work, but its playing with fire.

tempestn 12y ago

It's unfortunate that this kind of innovative idea seems to elicit a knee-jerk negative response in terms of ethics. (To the extent where even the person having the idea initially assumes it must be unethical!) Certainly it shares characteristics with unethical scenarios - a rich person buying a spot on a donor list, forcing others to wait longer for instance. But this particular idea seems to leave no one worse off, and many people considerably better off. Of course, it would be ideal if resources were simply abundant and all these trials could be funded without giving special treatment to wealthy donors. But given that we don't live in that world, I would certainly rather see one wealthy donor and nine other individuals (for example) get access to a potentially life-saving therapy than to have them all die in the name of equality.

coldtea 12y ago
>It's unfortunate that this kind of innovative idea seems to illicit a knee-jerk negative response in terms of ethics. Why, why let ethics mess up a perfectly profitable business idea? >Of course, it would be ideal if resources were simply abundant and all these trials could be funded without giving special treatment to wealthy donors. I don't think it's about resources, it's about their distribution. Such trials CAN be funded "without giving special treatment to wealthy donors" -- we're spending trillions more giving special treatmeants to wealthy people,(such as bailouts).
- tempestn 12y ago
  My point was that it isn't unethical; people just instinctively assume that it must be. I'm not going to argue the public policy motivation behind bailouts as we could go on quite a tangent there, but the fact is that many clinical trials go unfunded. Obviously money exists somewhere, and the government could unilaterally decide that it's more valuable to fund clinical research than to bail out failing companies (or buy F35s, or build schools, or whatever). Thus far they haven't done so. This plan, on the other hand, could actually start saving people's lives immediately.
cbd1984 12y ago
> It's unfortunate that this kind of innovative idea seems to illicit a knee-jerk negative response in terms of ethics. It's a shame that autocomplete can still elicit laughs. I like to think about it in another way: If poor people were given preference in terms of going on drug trials, would the same groups be up in arms about the poor being used as guinea pigs for the rich?

jboy 12y ago

The Dating Agency model discussed by the author is interesting, and I'm impressed that he went to the effort of discussing the idea with ethicists, lawyers and entrepreneurs (and of course, scientists). > Every year, an untold number of potential new drugs or interventions, any one of which might go on to improve thousands of lives, are thrown away without being tested in humans. It is a matter of funding, not science: there is not enough money in the public or private sector to run clinical trials on every exciting proposal that comes out of research labs. Thinkable.org is a recently-launched crowdfunding platform for cutting-edge scientific research: http://thinkable.org/discover http://thinkable.org/discover Similar to the article's Dating Agency model, Thinkable does review the campaigns before listing them publicly: "Dr McNeil said Thinkable would only allowed researchers affiliated with accredited research organisations to use the site and any funds donated would be managed by the organisation to ensure they were used for research." [1] Thinkable doesn't appear to allow you to buy early spots in the clinical trial queue, but it certainly seems that they want to ensure that important science research won't be lost between the cracks due to a lack of funding. A more democratic approach to funding scientific research, in contrast to the plutocratic approach discussed in the article. [1] http://www.smh.com.au/technology/sci-tech/young-scientists-use-crowd-sourcing-to-fund-their-research-20140804-zzs0y.html http://www.smh.com.au/technology/sci-tech/young-scientists-u... Edit: I temporarily removed my point about Thinkable being a democratic approach, because in retrospect it seemed a trivial & obvious observation, until I saw that wyager had just replied to that point specifically!

wyager 12y ago
>Thinkable is a more democratic approach Pedantically, it's a more market-oriented approach. A democratic approach would be if everyone got one vote (not proportional to how much money they were willing to risk), and voted on which drugs they thought should get funding, and the rest got nothing. Forgive me, this is a personal pet peeve of mine :)
- jboy 12y ago
  OK, you make a fair point. :) The difference between one-vote-per-person and a vote proportional to the amount of money you are willing to risk, is a significant one. So I suppose Thinkable is halfway between the plutocratic and democratic approaches? As an aside (tangent to your comment about the rest getting nothing), I don't know what Thinkable does if a campaign doesn't reach its funding target: Whether the money is restored to the sponsors or the researchers simply have to work on a smaller budget (maybe once a minimal funding threshold is passed).

cinquemb 12y ago

Things like this make me wonder about how we even define drugs. Organizations like the FDA might not approve of people buying their way onto trials for pills that can induce a specific mental state in someone, but if one is in a research lab now working on something similar but with a device, there doesn't appear to be an FDA like organization (yet) that would shut PI's (or current corporations make and sell said devices commercially) down if some wealthy individual decides to fly up every couple of weeks so they can "play", despite the non-zero probability of inducing negative side effects from the states one is potentially trying to induce. Kind of reminds me of in the late 1940's where x-rays machines were used fit shoes… only nearly 2 decades later the Nuclear Regulatory Commission was formed, where its predecessor was more in the business of enabling such endeavors. It seems like people who have access to enough resources and are looking for ways to exchange resources for something they want will find a way if the perceived possibilities are in their field of awareness… no matter any ones understanding of such things. tangent: If we're facing the lag "problem" with purely human behaviors and their externalities, humans approaching the endeavor for AI and AI augmented humans evokes the imagery of pounding ones fists in sand.

maldeh 12y ago

I'm not entirely comfortable with allowing this by policy. I could see this affecting the interpretability of results from such trials in the long run. If there's a rising proportion of mega-rich people in any given study, this could introduce significant sampling biases. Ethnicity, diet, lifestyle, gender - it all factors in and will have to be controlled for appropriately. Another concern is that this could introduce incentives into the eco-system that detract from the primary goal that is to obtain a drug that would be effective for as many people as possible (setting aside drugs with specificity as a goal for a moment). Imagine there's a drug A that happens to show very promising results on caucasians but not so much for africans, and a drug B that has more general effectiveness (hackneyed I know, but please bear with me). While a more impartial set of trials might have wound up selecting drug B (albeit after some passage of time), it's now possible drug A could get fast-tracked to market by virtue of being awash with funding from affluent volunteers while drug B never generates enough monetary interest to make it.

tempestn 12y ago
I think this concern was addressed in the article. The more advanced version of the idea would have wealthy donors fund studies, then receive the drug on a compassionate basis alongside the study, rather than actually participating in it. (There was a bit more detail to give the drug companies maximum liability coverage, but that was the basic idea.)
josu 12y ago
That's easy to fix, limit the number of places on sale to x% of the total.
_benedict 12y ago
Not only has this been addressed in the article, as mentioned by another commenter, but this market place is intended to apply only to Stage I to IIa trials, and currently only non-randomized trials. These concerns, even were they not already dealt with, would be moot as phase IIb and III trials would still need to be done via the normal (even more expensive) mechanism, with larger more robust populations.

jshb 12y ago

So what happened to the 2 million pounds?

emiliobumachar 12y ago

As an aside, I always thought that, while science was expensive, chemicals were cheap. But this article's ballpark figures are about hundreds of thousands of dollars per dose for drug production in small scale. I know it will vary wildly from drug to drug, but, in general, does anyone know if it actually costs that much to manufacture a single dose? Also, what if a rich, terminally sick person decides to break the law and manufacture a promising experimental drug for her own use in her basement? The chemical formula is in the published papers, after all. How many specialists would be needed in the conspiracy?

ctolsen 12y ago
The marginal cost of a single dose is probably never very high, unless precursors required are extremely scarce. Still, it wouldn't be in the hundreds of thousands. The cost lies in the development of the drug, plus the ten other drugs that didn't make it to market where R&D costs need to be recouped. And small scale production is naturally more labour-intensive.
nikanj 12y ago
It costs that much to manufacture the first doses, as there's a lot of hand crafting and lab work involved. Lab technicians are expensive, and the labs themselves are even more expensive. Later on, the manufacture turns from labour-intensive lab work to something more resembling a factory, and the cost per dose drops dramatically.
streptomycin 12y ago
This doesn't really answer your question, but a lot of new drugs are "biologic" drugs which are much more complicated and expensive to manufacture than small chemicals.

healthenclave 12y ago

I would like to shed light on the fact that "The Rich" have already bought up a lot of clinical trials and Medical research in general. If you look at the research done on disease prevalent in Rich population vs prevalent diseases in the poor -- you will see a clear pattern. For example: There are significantly more resources (Time, People and Money) focused on Rare Genetic Diseases such as Cystic Fibrosis (a rare genetic disease in Caucasians) Vs resources to find cure for malaria or better medications (in spite of the growing problem of resistance) Although many of the disease that are more common in poorer people are always linked to socio-economic issues and are not just a disease in themselves. From intestinal parasites to malaria. But not providing adequate resources to all such disease can turn out to be a disaster -- like that happened with US ignoring Tuberculosis as a significant health problem and then subsequent re-emergence of TB due hiv and MDR (drug resistant) forms of TB

zo1 12y ago
"I would like to shed light on the fact that "The Rich" have already bought up a lot of clinical trials and Medical research in general." I'd say that's an unfair, and loaded statement to make. "Bought up" is a very loaded term, and suggests bribery and denial of the thing being bought up from the "not-rich" by virtue of it all being taken by the "rich". So, you say there is a "pattern", and that this is somehow the purposeful doing of the rich. With not any proof of wrong-doing, you jump to that conclusion. You don't even posit that maybe it's perhaps researchers go where there is funding, or maybe drug companies find it more profitable to treat diseases that affect the rich, whatever. No. You blame the rich, for essentially having money and spending it on the things that affect them(if we can even make that causal link, but it's more likely indirect as per my alternate suggestions above). So in essence, what you're really bothered by is the fact that the rich don't share your views on what the rich should be spending their money on.
- healthenclave 12y ago
  I am just making a general statement and I was not accusing a particular group of people, gov or agency in doing so. In a fair world we would allocate funds for medical research based on number of people suffering from illness and not their purchasing power -- but then the world isn't truly fair to everyone. Imagine this were happening inside a country -- a large percentage of population with income below 60K suffered from an particular disease A and a very small chunk of people earning more than 120K suffered from a rare disease B. And everyone including the government decides to fund research on disease B -- won't that be unfair and unjust ?? Also with people shunning vaccines and emerging varied forms of resistance, Disease of the so called "Poor Developing Countries" might come back to haunt the "Rich"

fabian2k 12y ago

Ideas like this seem to me to be often based on a vast overestimation of how likely a drug candidate is to work. Something like 90-95% of drug candidates in the preclinical phase fail. And even if we go to the latest stage, phase III clinical trials, there is still a 50:50 chance that they won't work. Another issue is that the rich people likely wouldn't be happy with the chance that they're in the placebo group. So they probably would have to be guaranteed to get the real drug, outside of the actual trial.

robbiep 12y ago
I would have posted the same thing beforehand so I have To ask Didn't read the article?

DanBC 12y ago

Rich people are currently exploited by a range of people selling nonsense. Sometimes those people selling the nonsense know it's nonsense and they're just outright crooks. Often those people genuinely think they have a valid treatment and they're just being ignored because BIG PHARMA[1] or somesuch. Diverting money from those sham treatments into carefully controlled trials seems to be beneficial. [1] It's tricky to argue against some forms of WOO[2] because the behaviour of some pharma companies is so terrible. Only publishing results that show efficacy; fudging the compliance documentation; using dying cancer patients to campaign for changes in prescribing guidelines when the company knows the drug only adds maybe two weeks of poor quality life. [2] Waste Of Oxygen - a useless stupid pointless treatment such as homeopathy.