
What if mega-rich people could buy places on clinical trials? - ORioN63
http://mosaicscience.com/story/plutocratic-proposal
======
wyager
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-a...](http://www.bioworld.com/content/ema-trounces-
fda-2013-drug-approval-tally-81-vs-27) 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).

~~~
coldtea
> _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._

Whay would happen is the snake oil industry would get huge, and all
accountability will be lost. The drug industry after all WAS unregulated in
the past.

>* 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.*

You'd be surprised. People already fall for all kind of BS "snake oil"
remedies and magic pill solutions (not to mention stuff like homeopathy and
aromatherapy, etc).

What would happen in that case will be that they would consider FDA some
"bureucratic, antiquated" organization, that is "too slow" to respond to new
drug needs etc. And of course all the propaganda from the snake oil salesmen
will help in this.

Plus, remember the thamilomide baby situation back in the fifties? That would
be a much more frequent occurence with non FDA approved drugs.

~~~
robbiep
I hate it when people reply as I am about to, but:

> __Whay would happen is the snake oil industry would get huge, and all
> accountability will be lost. The drug industry after all WAS unregulated in
> the past. __

This

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maldeh
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.

~~~
_benedict
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.

~~~
maldeh
Alright, that's fair. I'm not too familiar with the design of these trials, so
I concede that my worrying about sample-poisoning is likely misplaced.

Still, and I realise I'm coming dangerously close to sounding like a tinfoil
spouting "money corrupts" as I type this, I would still be wary about how
introducing massive amounts of private donations of this sort might impact the
process of bringing drugs to the market. For the moment, this sounds great as
trials could now have a source of funding where there currently is none... but
it seems to me that this would further exacerbate the problem with the pharma
industry focusing on cash-cow meds. Things could get such that it would be
more profitable to target an exotic ailment with wealthy backers than to
target an affliction disproportionately affecting the plebes.

Not that I'm saying that we must not explore alternatives to the current
policy of denying experimental drugs to terminal patients. I'm simply
cautioning that we have limited resources and researchers, so we ought to be
careful how policy changes influences their priorities over the years.

------
tempestn
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.

~~~
cbd1984
> 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?

~~~
peteretep

        > 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?
    

From the NY Times:

    
    
        > What if the first doses of the drug — which had never
        > been used in people and had not even finished the
        > typical animal safety testing — had been given to
        > African patients instead?
    
        > “It would have been the front-page screaming headline: 
        > ‘Africans used as guinea pigs for American drug
        > company’s medicine,’ ” said Dr. Salim S. Abdool Karim,
        > director of Caprisa, an AIDS research center in South
        > Africa.
    

And also, while trying to refind this article:

[https://www.google.com/search?tbm=nws&q=ebola+"Guinea+pigs"&...](https://www.google.com/search?tbm=nws&q=ebola+"Guinea+pigs"&oq=ebola+"Guinea+pigs")

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fabian2k
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
I would have posted the same thing beforehand so I have To ask Didn't read the
article?

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healthenclave
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
" _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
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"

~~~
zo1
_" 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."_

Agreed, it's really impossible and on the same shelf as "Perpetual Motion".
But, to be fair, when most people these days talk of fairness or just, they
mostly refer to their own personal notions of those terms and what physical
outcome represents them best. The end result is that the terms are basically
meaningless, as no one can reconcile their personal definitions with a
global/universal definition (if one even exists).

" _[..]And everyone including the government decides to fund research on
disease B -- won 't that be unfair and unjust ??_" I'd say that sucks for the
"large percentage" of people you speak for. But, then again, a discussion of
this hypothetical scenario would devolve to a discussion of politics, because
their government is supposed to represent majority interest. i.e. That's the
actual problem.

------
DanBC
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.

------
cinquemb
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.

------
jboy
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-u...](http://www.smh.com.au/technology/sci-tech/young-scientists-
use-crowd-sourcing-to-fund-their-research-20140804-zzs0y.html)

 _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
>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
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).

------
emiliobumachar
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
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.

------
homulilly
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.

~~~
zanny
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
_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
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
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-a...](http://www.economist.com/news/leaders/21598648-birth-rates-are-
not-falling-africa-fast-they-did-asia-more-contraception-would)

~~~
ctolsen
1) It's the other way around. Higher standard of living means longer lifespans
via better resources and more room in the economy for healthcare and research.

2) I'm not sure what this means. We already have an inflation-controlled money
supply, and the patterns of both acquiring and printing money has changed
vastly over the past century or so.

3) That article tells you straight up that those parts of Africa are missing
out on the important parts of economic development that lead to lower birth
rates, namely physical safety and access to family planning.

------
jshb
So what happened to the 2 million pounds?

------
Havoc
Could work, but its playing with fire.

