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An anarchist takes on Big Pharma by teaching patients to make their own meds (statnews.com)
371 points by anarbadalov on Oct 13, 2017 | hide | past | web | favorite | 273 comments



That seems both super dangerous, and super awesome.

It's not something that we should have to consider. But this is the world we live in, now; legitimate supply lines of life-saving medicine have collapsed for a fair number of people. I understand why people might be troubled by someone actively going out and advocating this as opposed to simply making the information available, but if you're offered medicine with 95% efficacy that you can afford and use vs. a well-regulated 99.99% that only exists theoretically...well, come on.


The cost of medicine I require to be functional enough to hold down a job has risen so much that the copay is the equivalent of the entire out-of-pocket cost from a few years ago.

The medication was discovered in 1969. The application method, which is the shitty excuse for the patents protecting its $2,200/month price tag, was first approved for use by the FDA in 1979. The drug has been for sale in it's current form for over a decade.


Enbrel? They just received another patent extension, too.

This is what government granted monopolies look like.


This is what the breakdown of working competitive markets look like, and in this case it takes both government monopolies, as well as well as overwhelming short-term greed on the part of the private companies.

Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort... or maybe they think they should extract profits now because of a chance of drug price regulation coming to the US in the future?


>Long term don't these companies think that charging outrageous prices for drugs will cause a future voter/government backlash of some sort

No, because it demonstrably won't. People say they're angry and then do nothing about it. The US has an entire political party angrily decrying any effort to regulate healthcare as socialist slavery.

The drug companies know they'll be just fine. Maybe some token slaps on the wrist and public performance of cosmetic changes to appease people now and then, but nothing will happen to them.


the US has an entire political party angrily decrying any effort to regulate healthcare as socialist slavery.

Argubly regulation is the problem we're in this mess. Do you think an epipen would cost $600 if there weren't a Government granted monopoly?

We have two parties who love the current amount of regulations on competition - you need to go to an AMA approved medical school to become a doctor, there aren't H1Bs for health care workers, and the government gets to pick and chose who's allowed to sell medication.

They just disagree on the amount of subsidies for poor people. One party thinks prepaid consumption with cross subsidies is insurance and the other party thinks that insurance shouldn't be so binding if you get sick.


Regulations can put pressure on prices (and if you look at epipens in particular, part of the regulations allowing the increase of their price have nothing to do with monopoly and a lot to do with getting policy placed into areas where organizations are required to keep an epipen on hand by regulation...).

But in terms of overall effect, one can't ignore other nations which pay much lower prices for healthcare with both regulation for drug patents, as well as regulation on drug prices. That combination manages to deliver better care at lower costs than the US (we pay on average double per capita). So I don't think one can generically fault "regulation" for a poorly performing health market in the US.


So I don't think one can generically fault "regulation" for a poorly performing health market in the US.

You're absolutely right, however, I do think the worst parts of our medical system exist as consequences of regulation.

The mandate that emergency rooms treat anyone who enters is onerous and there's no free lunch, paying customers are stuck with the bill.

The licencing system isn't optimal for cost effective care.

There's a lot to be desired for people who favor supply side solutions to expensive problems.


> The mandate that emergency rooms treat anyone who enters is onerous and there's no free lunch, paying customers are stuck with the bill.

I don't think that's onerous, I think that is a minimal, and admittedly imperfect, expression of our societal intent that people shouldn't die unnecessarily in emergency rooms - either from lack of being able to pay; nor from a practical standpoint, lack or delay of on-hand proof of ability to pay.

Removing those regulations would cause all sorts of other problems. Someone arrives in an ambulance near-death, if I lack morals then one level of maximized extraction price is to have those patients commit to pay a value that represents the earning potential for that person for the rest of their life. They have to agree before getting admitted. Even more profitable, if I judge that person as having a well connected social network, I can charge even more because I know their friends and colleagues would chip in to save them... I'm not sure how a competitive market with no regulation changes the worst case for this transaction - if someone is near death then moving on to another emergency room is out of the question.

I see universal healthcare with a shared cost-pool as the lowest overhead way to provide for our social moral desires (but then I'm not in fear of the regulation with may be needed to implement that policy).

Insurace with a shared risk pool is a technically workable, but adds even more overhead, and ends up a more expensive way to do the same thing... but again regulations are involved (and fixing very flawed ones at that).


> Someone arrives in an ambulance near-death, if I lack morals then one level of maximized extraction price is to have those patients commit to pay a value that represents the earning potential for that person for the rest of their life. They have to agree before getting admitted.

Actual markets don't work that way. If you could actually make that much money then someone would open a competing emergency room right across the street, let everyone know that they charge $1 less and take all the business. Then the first emergency room would charge $2 less to take it back, until they're both charging reasonable prices.

It's the same reason you don't have to sign your life away to buy food even though you would die without it.

The problem in the US is that the regulations on the market for medical services work almost the exact opposite of that. There is no price transparency at all so you have no idea which facilities are more expensive. And if someone wants to open a competing facility, they have to get a Certificate of Need proving that the existing facilities don't have enough capacity. Even though having enough capacity doesn't preclude charging outrageous prices in the absence of competition.

> I see universal healthcare with a shared cost-pool as the lowest overhead way to provide for our social moral desires (but then I'm not in fear of the regulation with may be needed to implement that policy).

The existing US system is pure corruption. It's heavily regulated but the regulations are a result of regulatory capture by insurance companies (who want higher costs because higher costs means more vig), and all the industries the insurance money pays for like pharma.

The result is that medicine in the US is outrageously expensive. But the expense doesn't go away even with universal coverage unless you fix the regulations, and if you did that then people would be able to afford medicine out of pocket without insurance.


> Actual markets don't work that way.

Isn't that exactly what's happening in slower motion with the incredible price hikes in many drugs such as insulin? And you assume that the neighborhood can sustain two emergency rooms - a second competitor isn't going to arise if the setup costs are high and the competitor can't undercut and survive the competition phase. This is exactly why there aren't multiple competitors to residential ISPs, because after the risk and costs are factored in setting up overcapacity for a market isn't a good investment.

Further if you look at the drug markets, sufficient cost and time barriers exist and allow even makers of generic drugs (with no patent monopolies) to charge inhuman rates for drugs. And generally investors are not going to back efforts to fund a head-to-head competitive slugfest when the market of users for a given drug is basically of fixed size. Again building overcapacity is generally avoided in these markets because of the high entry barriers.

https://www.nytimes.com/2017/04/14/business/lannett-drug-pri...


> Isn't that exactly what's happening in slower motion with the incredible price hikes in many drugs such as insulin?

Again, the market for medicine suffers from regulatory capture. The regulations make it prohibitively expensive (literally millions of dollars) for new competitors to enter the market, which allows the incumbents to conspire to fix prices.

If we had the same standards for manufacturing medicine as we have for manufacturing food, that wouldn't be happening.

> And you assume that the neighborhood can sustain two emergency rooms - a second competitor isn't going to arise if the setup costs are high and the competitor can't undercut and survive the competition phase.

All you need is for the profits from entering the market to exceed the entry cost, which is exactly the case when the existing provider is charging outrageously high prices.

It is certainly true that adding a competitor will increase total costs. But that means total costs will at most double. That's not good, but it's not anywhere near as bad as having a monopoly that can demand your lifetime earnings in exchange for saving your life.

And everybody knows that to begin with, which is why you get this:

> This is exactly why there aren't multiple competitors to residential ISPs, because after the risk and costs are factored in setting up overcapacity for a market isn't a good investment.

It would be a good investment if the incumbent ISP was charging $500/month for residential internet service. But they know if they did that then it would open the door to a competitor who could charge $400/month and still pay the cost of duplicating the entire infrastructure.

So instead the incumbent charges $50-$100/month, even in areas where they have a monopoly, because they know that price is low enough to deter new competitors from entering.

A credible threat of competition is enough to prevent prices from becoming completely outrageous even in areas where there continues to be a monopoly in practice. Only monopolies under no threat of competition, like the ones enforced through patents or Certificate of Need laws, can charge outrageous prices without that happening.


Did you read the linked article? A generic maker of generic drugs in dramatically increasing prices with no sign of the entrance of competitors. Competition can enter but the barriers are too high - even without any government protection remaining on the generics in question.

The competition doesn't pay the cost of duplicating production - not after the competition has lowered the price. At least the chance of that is why no one tries to enter.

To make even the generics at a reasonable quality is a barrier sufficient in an of itself. And a competitor risks the incumbent lowering the prices to cut off the incumbent - no investor is signing up for that expensive fight as evidenced by the article... generics are rising in price to reflecting the effectiveness of the barriers. (well and lack of price regulation by our healthcare system)


> Competition can enter but the barriers are too high - even without any government protection remaining on the generics in question.

But that's the whole point -- what is causing the barriers to be so high? Regulatory capture isn't just patents. Drug companies like the fact that a would-be competitor has to pay millions of dollars in regulatory compliance costs to enter the market. Because it should cost them $1 to make drugs they sell for $1.25, but apply enough red tape and it costs them $100 to make drugs they can sell for $300. They still can't charge $10,000 because that would invite competitors, but the $99 in overhead is what allows them to charge $300 for something that should cost $1.25. The overhead raises the barrier to competition, resulting in less competition.

And the fact that most of the drugs are paid for by insurance companies or the government only exacerbates the situation, because they're deep pocketed bureaucracies under orders to pay whatever price the seller sets. No surprise the sellers take advantage of that.

> (well and lack of price regulation by our healthcare system)

The problem with price regulation is that it only solves a small part of the problem. If you're wasting $99 in overhead, you might shave off some of the profit margins but you're still spending $100 to produce something that should cost $1 and sell for <$2. You have to actually address the regulatory costs -- and if you did that then you would have competition.


Those costs don't go to zero without compliance - there would either be costs to manufacture with sufficient medical quality or people would be getting shoddy drugs (which is a human cost). Blackmarket drugs get cut or replaced or just have random terrible things mixed into it all the time so I am skeptical of zero-compliance cost drugs.


Okay, if you want to pay extra for compliance, you're allowed to do so. Just as you're allowed to spend more on iPhones. It's mean-spirited of you to argue that others should be bound to your quality expectations.


If you don't want the quality, you are free to go procure the medical drugs and services from a back alley, but I doubt it's worth all the verification work that would require...


That's not true in America.


Compliance costs can be low without being ineffective. You can buy a bag of spinach for $2 and yet so few of them are infected with salmonella that when it does happen it's a huge scandal.


>even without any government protection remaining on the generics in question

Go try to make and sell some generic drugs and see how far you get. Spoiler: you're very wrong.


I don't defend the status quo. I think this is the right way to resolve healthcare.

I agree with about 95% of this: https://market-ticker.org/akcs-www?post=231949

We just need smarter regulations:

> every medical facility needs to have a price for each billing code

> every healthcare facility has to publish their prices

> heatlh care facilities must honor their published prices for everyone

> if someone needs car and they can't pay, the government will pay for the care but the government holds a debt and can garnish wages / use tax refunds / credit welfare to cover the debt

If people could shop on price for routine care, medical companies would become more efficient and extend those prices to people in an emergency


Have you seen healthcare regulations ? The lengths hospitals and drug makers have to go through to prevent ANY mistakes are simply not reasonable.

That's not 1/1000. Not 1/1000000. Not 1/1000000000. Zero. Entire companies get shut down because of a single mistake. Think about how ridiculous that is. A company owns 5 separate factories, and in one of them a product was produced that may, in a panel of doctor's opinions, have caused the death of a patient (mostly one who would have died without the medicine), and all 5 are immediately shut down until an extensive investigation is not just run, but run in an approved manner by outside experts, and the resulting cause was both found, approved by the panel of doctors and the government.

And of course, a company is supposed to take care of any patient they damaged, for life, full treatment for all ailments (not just the one that had something to do with what they did), ...

We used to let people prepare medicines in corner shops with at least a few ingredients they procured themselves. Needless to say, pretty cheap. Mistakes were ... not common, but certainly more so than today.

Until we find a balance between care provided and acceptable risk there will be no reasonably priced healthcare. Until we stop giving health at any cost, and count on "management" mistakes to do cost saving (regulating that people get thrown out of hospital the day after open heart surgery unless there are complications. Well, if you want to survive, you bloody well hope your doctor finds some complication. Needless to say, proposals for making it same day are on the table. Good luck).

And of course, like good capitalists faced with demands like this, companies don't say "are you bloody insane ? This will bankrupt the entire country", they say "How secure do you want it to be ? Perhaps even a bit more ? I mean we can always do better. That'll be $xxx(xxxxxxxxxxxxxxxx)".


I 've seen a ton of healthcare regulations and apprently we're in agreement they leave a lot to be desired.


Healthcare often isn't billable in consistent units. Someone goes in for surgery, and they get opened up, despite pre-imaging, there are complex things that can go wrong and instead of a 1 hr 10k effort, you need to put in a 6 hours 100k effort? how is that billed? are you going to require statistics of probabily of going wrong too? By the time you get all these 'consistent billing units' figured out for all the multitude of ever changing procedures wouldnt have been cheaper just to have covered reasonable costs instead of maintaining a multi-way cost/trust verification excercise?


how is it billed?

Go ask the people who get jobs as billers - most hosptials have more billers than beds, they can sort it out.

Before you go to surgery agree on the price of everything and ask for a video so you can verify the work was done as billed and there wasn't any padding. In an emergency situation, you're entitled to the price they advertise. IF you can't afford it, the government picks up the bill and maybe you pay for it, maybe you don't. If you want insurance, you can buy insurance but let the insurers use every actuarially relevant bit of information so the insurance works as insurance


That is ridiculous on so many levels.

Several years ago, I had my gallbladder out in an emergency surgery. I was in intense, intense pain. My friends worried I was having a heart attack. They drove me to the hospital, because I could barely stand, let alone drive. Such intense pain I was barely conscious.

In the ER, I remember they did an ultrasound to determine it was my gallbladder, and then pumped me so full of morphine I was fully incoherent. Still in agonizing pain.

Then, a few hours later, they cut me open and pulled it out. It was starting to go necrotic. They said, had I waited a week, I simply would have died of blood poisoning.

At no point was I in any condition to agree to a price on anything--incoherent from pain, and the morphine. I was in no position to shop around. My friends didn't even know what was wrong with me, they just drove me to the ER because we all thought I was dying.

Even if I had been able to agree to anything--which I couldn't, due to pain--having a video recording of the surgery would have done absolutely nothing for me.

Oh, and while I was in the ER, I did see a couple of gunshot victims--fully unconscious--wheeled through from ambulances. What are they agreeing to??

Man, I don't think you've ever really experienced the health system, and I don't think you've thought about your plan.

(Sadly, I also don't think people's real experiences are going to change your mind, either, but it'd be great if you did think about how nonsensical that fix you're proposing is.)


here's the rub - people who don't wait for catastrophe will shop around on price and healthcare providers will have to publish competitive prices for that business.

You get to pay the advertised price which is going to be much lower than the myster price today.

Regarding gun shots - I think people with gang tattoos shouldn't get healthcare for bullet / stab wounds. Let gang bangers quash their own beefs.


Neither you nor I know who was shot or why. I didn't mention "gang bangers" and it's offensive and stupid of you to bring that up.

And you obviously haven't thought one bit about the very common situation where someone without health problems is suddenly struck by them, and in a way that makes them unable to price-negotiate.

You're ignoring the reality of the health care world, and hey, fine, it's a free country, but it doesn't make you look like a reasonable or thoughtful person. It makes you look like someone with a blind faith in an ideology.


If a person with teardrop / neck tattoos shows up with a gunshot wound on a weekend night, I have enough confidence to say "get out of this emergency room or we'll call the police".

The whole point of negotiation under duress is rendered moot when the person under duress gets to pay prices that are presented to people who aren't under duress.

Let me craft an analogy - once upon a time I was going on a road trip and forgot to get my oil changed until the day of the trip. I called up the dealer and asked if they could sneak me in - they could, and I got to pay the same oil change price as someone who scheduled it two weeks in advance. The dealer didn't jack up the price because I needed an oil change immediately and they couldn't because they list their prices and are legally bound to honor them.

I think healthcare should have the same thing - every medical facility should have to publish their prices and they should be bound to honor them.

And in my system, if you can't pay, you're not going to debtor's prison. You get to go on your way and you might see less social security or tax refunds until you've made good on your debt.


"If a person with teardrop / neck tattoos shows up with a gunshot wound"

Again, you don't know a single thing about the gunshot victims wheeled through the ER the night I was there.

You keep bringing up gang imagery, or trying to say somehow that those gunshot victims I saw deserved it or don't deserve medical care (they're just gang bangers and you want to call the cops??? no, they're fucking gunshot victims, and you don't know shit about them).

That is stupid, offensive, and wrong.

You don't know a thing about them and you've now twice inserted your completely-made-up-out-of-your-own-head "gang bangers" or "teardrop tattoos" shit.

Where the fuck is this gang banger garbage coming from?


I don't know "where the fuck this gang banger garbage" is coming from but there'd be a lot less of it if we stopped giving them get out of jail free cards in the form of emergency healthcare.

You know what's offensive? I pay more than my fair share healthcare expenses and I don't get better access to care than lazy people.

You know what's stupid? Health insurers can't adjust my policy based on my gender, but auto insurers can.

You know what's wrong? The status quo that makes it better to present to an E.R as a lazy jobless poor person than someone who's working poor.

You know the system is bad, why are you defending it? Why don't you go out and tell those gang bangers to put down their guns? They won't, and you're too scared to talk to them because you know deep down that violent poor people in bad parts of town are dangerous and beyond reason.


Again, you assume these gunshot victims were gang members.

You don't know shit about these gunshot victims but in your mind "gunshot victim = gang member".

Do you honestly really think that everyone who has been shot and taken to a hospital ER is a gang member?

Honestly, really? No one who's been shot isn't in a gang?

If your answer is "yes, every gunshot victim is a gang member" then you're a real prize moron, no two ways around it.


No, I think people who look like gang members who have gun shot wounds are probably gang members.

Neck tattoos, chains, bad attitude, won't tell the police who shot them = probable gang member

Wearing a suit, eager to talk to the police = probably not a gang member.


So what if they're gang members? Does that mean it's OK to sentence them to death? Take a good, long, hard look in the mirror.


YOU. DO. NOT. KNOW. WHAT. THESE. GUNSHOT. VICTIMS. LOOKED. LIKE.

DO YOU UNDERSTAND???????


We're talking about two separate things -

I'm talking about gun shot victims who look like gang members.

You're talking about people you've seen. If those people don't look like gang bangers, that's fine, then they can get help.


And what about patients who can't pay ? Whom, therefore the government can't make pay either ?

Secondly, what about people who become destitute because of a medical procedure and do what they sometimes do in Holland ? (if you're fucked on bills and the state comes after you and you would become homeless, simply rob places until you get convicted for 10 years, and stay in prison for 10 years. Free tv and internet, and nobody garnishes any wages. Outside you wouldn't be able to pay rent).


Then they get healthcare at no cost to them - like they already do.


That's not how it works. Have you ever had a major medical procedure? You're out of touch and talking about things you don't really know about.


Yeah. I was able to call around and save some money, imagine if I could shop for it without having to call around.


I concur. The argument that healthcare in the US is broken because its a market almost triggers me. It has profound regulations that affect its market behavior.


"So I don't think one can generically fault 'regulation' for a poorly performing health market in the US."

Well articulated counterpoint: http://slatestarcodex.com/2016/08/29/reverse-voxsplaining-dr...

Also, we live in a country where most places they don't even allow opening a new hospital without the permission of surrounding hospitals, and all of the recent healthcare regulations have encouraged a seriously problematic consolidation just like the big banks.

As an industry, healthcare is so over-regulated it isn't even funny. The good news is that drug prices are still generally falling outside of big examples like Daraprim and Epipens and there are fairly effective solutions to the spikes we could have if the FDA would get onto more reciprocity with other nations: http://marginalrevolution.com/marginalrevolution/2016/02/the...

Also relevant, the US Cost disease: http://slatestarcodex.com/2017/02/09/considerations-on-cost-...


I don't find that first link well argued at all: because corporations have achieved some degree of regulatory capture from the FDA, we need to eliminate regulations and let those same corporations run completely rampant and somehow that will result in better performance? That makes no sense to me.

Also, the comparison there in the drug vs the chair market there is poor too. The key difference between manufacturing drugs and chairs (as in the example), is that anyone could enter the chair making with one guys who has had high school woodshop. Manufacturing a drug has a much much higher bar...


I don't find that first link well argued at all: because corporations have achieved some degree of regulatory capture from the FDA, we need to eliminate regulations and let those same corporations run completely rampant and somehow that will result in better performance? That makes no sense to me.

If that's what you got from SSC's cost disease article, you might have some bias in your framework.


>Argubly regulation is the problem we're in this mess.

No, that's not even arguable. Other countries with even more highly regulated healthcare manage to provide it for much, much less. You're just regurgitating mindless libertarian talking points that have no relation to the real world.

The particular form of regulation in the US may be a problem, but regulation in general is demonstrably not.


Let me clarify - the US's regulations are the reason the US has expensive healthcare.

IF we regulated single payer health care into existence, we'd have cheaper care. The problem isn't regulation per se, it's our current regulations.


Party A: Create new regulations which benefit pharma

Party B: Remove old regulations which disadvantage pharma


I love the reductionism.


The epipen delivery system and the Epinephrine inside of it should be sold at cost. Both were developed by the US Military (taxpayers) and American taxpayers should own it.


At-cost? Enough to cover the executive compensation, right?


>Argubly regulation is the problem we're in this mess. Do you think an epipen would cost $600 if there weren't a Government granted monopoly?

All property is government intervention. And property is good. Because property is capitalism, and capitalism is God's will.

/s


I sometimes feel like "free-market" types are actually incapable of understanding this point. The idea that markets and property exist as some sort of independent, empirical objects is baked so deeply into their ideology that it's almost as if they lack the symbolic vocabulary to even conceptualize the idea that property itself is created by regulations.


You seem very strongly invested in this point, which is strange considering how easily refuted it is:

Property existed long before third-party regulation.

Rather than ownership being enforced by a third party with monopoly on violence, it was enforced by the threat of escalating violence from the property owners themselves.

Eg. You take one goat from my herd and refuse to give it back, and we are now at war. Result: Nobody takes any goats.

So the property was defined by mutual understanding and mutual enforcement, not regulation.

This is still done in some societies and sub cultures (Eg. Criminals). Even animals do it, with things like territory or sharing food from a kill.

A mutual cultural belief in property strengthens this mechanism and makes it work more smoothly. This cultural belief is part of what ""free-market" types" (sic) would like to spread.


It's interesting that you start off attempting to refute me but end up demonstrating my point. The cultural conditions in early agricultural societies, before the development of the city-state, were insufficient to support a strong rule of law, and hence, property as we now know it. Property and personal possession are not the same thing. Certainly, individuals claimed ownership of goods, and barter occurred, but these were far from the only or even the dominant modes of economic activity in early agricultural societies, which also incorporated gift economies and cooperative sharing of labor and goods. By interpreting past economic systems through the lens of capitalism, you are proving my point: that the defenders of the free market commit the fallacy of reifying markets and property, as we now define them, as some sort of inevitable emergent attribute of human society, when there have been many different economic systems throughout the history of human civilization, none of which fully correspond to the abstract conception of the free market as discussed by economists.


And with those conditions economic growth and stability of society seems much lower than the more civilized alternatives...


This doesn't mean property exists in the same way that objects exist. A piece of property is just a protected object.


Go try to wrestle a caveman for his fur pelt and see if he considers it to be a protected object.

Force protects the object, sometimes the government exerts the force sometimes not.


>Go try to wrestle a caveman for his fur pelt and see if he considers it to be a protected object.

But if I show up with a better club then all his stuff is now mine. A third party enforcing certain resource allocations with overwhelming force is different to everyone defending their own stuff.

Government is the difference between property rights and might-makes-right.


In theory yes, if you have an impartial third-party monopoly, but in practice it's still might-makes-right, where might = money, lawyers, political connections, ethnicity, etc. It's probably still better, but it's less transparently obvious what's going than with my club vs. yours.


But if I show up with a better club then all his stuff is now mine.

Bingo. Ownership exists without government - ownership exists to the extent others respect the claim.

Government is the difference between property rights and might-makes-right.

Governments are legitimate because of their might. Why do you think the basic social contract between authorities and the governed is "obedience for protection"?


Eh, I don't disagree, I was just trying to distinguish between property existing and objects existing. But maybe force defines existence all the way down.


Property is created by government, but markets are more like evolution or society; a system that emerges naturally out of multiple separate but interacting agents given the right set of conditions (namely, scarcity and the ability to exchange goods and services).

Even in places like East Germany or prison where overt markets are suppressed, people still exchange things with each other, even developing bootleg currencies such as loose cigarettes. And if there’s a sudden shortage of a specific good inside these black markets, the price will go up; likewise if there’s a sudden surplus, the price will go down; likewise; if there’s a sudden surplus in whatever good is used as a currency (e.g. cigarettes) then there will be inflation, at least until its cost-effective to switch currencies.


Or swords and chainmails if we go back to the birth of common law and guns and bacterial warfare in the case of Turtle Island aka Americas.


Perhaps, though I think I'm more energized personally voting & with campaign involvement in the upcoming elections this year than ever before. And part of that is knowing that it might help Medicare for all or other universal healthcare options - maybe not this election or the even the next - but personally I feel it has to happen and is worth working towards.


I suspect that at some point there will be a backlash in the form of someone or some people with nothing to lose becoming violent in the face of an effective death sentence in the form of unaffordable healthcare.

"Ultima ratio regum" is an appalling way to enforce fairness, but it doesn't seem to me that greed in general will stop short of a true class war or an external threat ala a World War.

Also to be clear I am definitely not advocating this route, I'm trying to figure out what anyone can do to prevent it and thus far I am at a loss.


I'm trying to figure out what anyone can do to prevent it and thus far I am at a loss.

You quietly find another path and make these insanely expensive drugs vastly less relevant. The real challenge is effectively spreading the word. Something truly disruptive in this area seems to be about the most offensive thing a human being can do.


The funny thing is that pharmaceuticals are simply one of a number of unconscionable negative-sum-games that are being played these days.

I just don't understand how people can make such a blatantly destructive set of choices when it's really clear that it will come back and bite them in a way even the most psychopathically mercenary people should understand, let alone anyone with a more advanced morality than "I got mine".


Currently, the world actively makes it hard to make any other choice. I have made other choices. Part of the result:

I spent ~5.7 years homeless while classist assholes (online and off) shit all over me.

I believe part of this is happenstance. Humans are little monkeys with brains designed to parse a social order for a tribe of 150 members. With 7 billion people on the planet and a global economy by necessity, the paradigms developed to parse our tribe break in the face of a sudden new world order.

It is actively dangerous to give a damn about the welfare of other people. Some of that is also happenstance. Strangers from extremely different backgrounds face substantial obstacles to good communication.

But, we really need to solve this, even if we are all cold hearted sociopaths who don't give a damn about anyone but ourselves. Like you said: If we don't, this will eventually go very bad places.

Given the recent mass shooting in Las Vegas, the record destruction of hurricanes in Texas and Florida, and the ongoing fires in California, I think it is reasonable to assert that our choices are already coming back to bite us. We can do something more sensible or continue to suffer the consequences.


Don’t get lost barking up the partisan tree, most Americans aren’t the enemy. Both parties are different flavors of corrupt (Gore Vidal’s Property party): one ignores their base while taking corporate money and the other panders to extremists and also takes the same blood money.


It's a sliding scale, but it's not close to balanced right now. Saying things along the line of 'different sides of the same coin' does not make sense.


No. :(

Businesses have no concern over their long term viability. Executives are not incentivized in anyway to care about long term interests. In fact all their bonuses and compensation explicitly reward the short term. Compounding the problem is a simple cost benefit analysis means they've already costed out the future "backlash," and still find themselves to be more profitable.

The "long term" is nothing but a mental exercise with no real world manifestation for businesses. The closest you can probably get to it having meaning is for business school grad students doing case studies.


No, this is exactly what a 'working competitive market' looks like. If you somehow still believe the simplistic fantasies of economics 101 with a clean partition between 'the market' and the meta-market game, then you urgently need to wake-up.


Enbrel didn't receive a patent extension.[1] In 2011, a patent was issued that covered certain aspects of Enbrel that had originally been applied for in 1990. Under the rules applicable to pre-1995 patents, the life of that patent runs 17 years from the date of issuance (or 2028). That could not happen under the current law. Patents issued after 1995 are only valid for 20 years from the date of filing, with current limited adjustments due to delays at the USPTO.

[1] There isn't really any such thing, at least as a way to resurrect patents that would otherwise expire.


It's a difficult balance to strike - you want the companies to keep developing drugs, you want onerous regulation on those drugs to make sure they're produced and tested for safety and efficacy. But then you want them to be cheap for patients and insurance companies.

The best solution is probably to simply drop patent extensions for these things and allow generic drug manufacturers to do what they do best, but if you do that too early you risk damaging funding for new drug development. Too late and you wind up with companies just building up piles of cash like we have today. You need to hit that point of "we need to develop new drugs to make a profit" - what that is, I'm not sure.


You want pharma companies to keep doing drug discovery why not ban outright any kind of marketing or advertising for their products? R&D spend across the industry is a fraction of the marketing spend. Think of all the good research that money would fund once pharma companies were freed from spending it on advertising.


Whenever I visit the US I find it insane how much advertising for drugs is shown on TV, with the usual "ask your doctor about..." disclaimer at the end.

Why aren't more American's up in arms about this?


Only two countries allow direct-to-consumer prescription drug advertising -- New Zealand and the USA.


Maybe we know how to avoid the ads better?


doctors told them they were being rebellious & put them on medications


Seems like a reasonable idea to me, has anyone attempted to apply some of the less controversial possible solutions here in the US? Like shorter patent lifetimes or a ban or reduction on drug advertising?


Things definitely have been tried. However, companies find loop holes and frequently things get worse after. Check out this amazing episode of econtalk: http://www.econtalk.org/archives/2017/06/robin_feldman_o.htm...


Ideally, the government should just straight-up pay companies to do drug discovery using something similar to cost-plus defense contracts (and establish DCAA-style auditing practices to keep them honest).

Establish strict price controls, ban drug patents, and make production volume guarantees a hard condition of receiving federal drug discovery money. And the money should be large enough to be worth it. Ideally, 90%+ of a drug company's income should be from federal contracts and not from sales.

And if that turns out to not be feasible, just nationalize them. The federal government can hire drug-discovery chemists and manufacture the drugs themselves.


That's a very left-wing view of things - I don't necessarily disagree with it, but I think there are far less drastic changes that can be made to achieve a comparable result.

You'll have a hard time selling a plan like that to anyone even slightly right leaning - think about it politically for a second. The government decides what drug development gets priority? Remember the death panels talk from a few years ago?

It's viable, but involves a lot of trust in government, so much that even as a fairly left-leaning person myself I'd have to think twice about it.


I agree that trusting the government is out of the question, perhaps we could try an open source solution. Publish drug data, studies, manufacturing knowledge, and all of the usual pages of warnings, indications, contraindications, pharmacokinetics, etc. GitDrugs.org? I think India might have the right strategy with prioritizing human need over economic factors, at least in the short term. I think the problem with funding is a multidisciplinary one, unrelated to how much they can charge for the product. If we can figure out how to match problems->researchers->funding efficiently and effectively, finding drugs and researching existing ones won't be a problem.


> The government decides what drug development gets priority?

This might become necessary if we're to avoid an antibiotic crisis. Bacteria are becoming resistant to antibiotics at a greater rate than antibiotics are being developed. The problem isn't that we've tapped out what antibiotics can do, but rather that drug companies have little to no interest in developing antibiotics because there's very little money in it. Antibiotics are un-sexy drugs that don't make for good marketing campaigns.

Ultimately, if we want to continue to have effective antibiotics, a large entity with no profit motive, nigh infinite money, and a monopoly on force (i.e. the government) will have to get involved.


We're already well down that road via NIH and DOD funding decisions.


It depends if you think it would stop other funding of drug development.


My problem is: It's in the public interest for these drugs to exist, but how do we keep drug companies from becoming an industrial complex ala Lockheed/Boeing?

They should be non-profits.


Developing drugs is very expensive. It takes years of research, most of which fails. I.e. out of the various molecules being researched, only few actually make it through all the trials and approval and get to market.

Due to the risk, investors are looking for high returns from successful drugs.


Due to that risk, the wast majority of base research aren't funded by investors. NiH funding for medical research is the single biggest researcher in the world, with a annual research budget of $26.4 billion. All that is paid double by the citizens, first through taxes and then again through insurance/drug cost.

Now imagine if we had a regulation that both forbade universities from issuing patents and limited the price of any drug that is initially based on public funded research.


Would we also have to refer to the periodic table of the element's as "Mendeleev's Table", or could we not emulate the USSR to such details?


EMSAM

Unfortunately, no other class of drug class has worked, and the traditional delivery methods (ie - pill form) caused measurable hearing damage, just from the trial periods.


If you take the oral version (as opposed to the patch version) you can get it from India (where the patents have expired). A site I've used in the past that's reliable is AllDayChemist. Search for Selegiline and you can get it for as cheap as 18 cents per 5mg tablet.

Good luck!

Edit: Sorry, read below that you need the trans-dermal version.


And this is what populists should be irate about. Not... other things.


I am astonished that a couple of the biggest insurance companies in the US haven't banded together to form a drug manufacturing co-op. Find stuff that's off-patent and build generics for things like epi-pens. The best bit (to my thinking) is after doing this to just a few drugs, the insurance companies would have a very big negotiating stick to go after other companies pricing off-patent drugs way over cost.

If I knew a thing about pharma manufacturing I'd be spending my time trying to do this.


I know it's just about become a meme to share these, but there's a great Econtalk from earlier this year that explains the drug patent system. If you've never had an in-depth, you'll learn a great deal.

http://www.econtalk.org/archives/2017/06/robin_feldman_o.htm...


The insurance companies aren't really paying these prices. I wouldn't be surprised if that $2,200/month out of pocket price got knocked down to for 'bulk purchase' ending up with the insurance companies making more than they did before the price hike, and with more leverage over the customers due to the 'costs' involved.


> Find stuff that's off-patent and build generics

Indian pharma industry is mostly doing these. We export a lot of generics to other continents as well.


Indian pharma is not just manufacturing generics; the government also uses compulsory licensing to ignore patents.


Those constitute only a minsicule amount total manufacturing. It is used only for few serious diseases, e.g. leukemia.


"Find stuff that's off-patent and build generics"

There are a lot of companies that do that.


But yet things like Epi-Pen price increases occur, so it seems like there's room for a lot more.


You should consider the fact that EpiPen is 'off patent' and that it is priced at some high number by a generic company and that there apparently are no others.

The 'market is speaking'.

If it were in way lucrative, someone would be doing it.

I suggest that it's just a very expensive thing to develop and make, and there isn't a huge demand - otherwise, someone probably would.

Now, $600 seems just crazy to me, and like you, my instinct might be 'there's room for someone' - but in reality, it's never that easy.

My father worked in Pharma, and once sold a small empty building on behalf of a company for huge $$$ to a Chinese firm - only because it was 'approved' by the Canadian government for making drugs of a certain quality, and that this approval would have been very expensive to obtain. This is just at the top of the list of how many regulatory issues there are in making drugs - and why they are so expensive.

I mean it does seem a little crazy that there are $600 EpiPen's but no others - when anyone can make them, but that's where we are.


The next Mickey Monday won't be flying cocaine he'll be flying in life saving basic meds from India.


Is it not possible to order a generic from India or another country? The drug should be out of patent a long while already?

If no competitor is available, why doesn't anyone set it up? It looks like a great startup opportunity.


The drug is out of patent.

As soon as it went out of patent, they patented the drug + transdermal patch. So, in order to keep their profits up, everyone went without the patch system until their original patent was about to expire. So now they can charge $2,200 for something they developed in the 1990s, but intentionally kept off the market to monopolize.

This happens as a matter of course, with every new drug.

Without the transdermal system, I can't take the drug. I have to take too much of the active ingredient, and it causes pain and permanent hearing damage.

Thanks for suggesting grey market alternatives - I hadn't given it a thought. However, they would definitely be grey/black market, since it's not off-patent, which means there will be higher risks, and it will harder to obtain.


Import laws exist to prevent this specific scenario.


travel might still be cheaper, no?


If the drug is out of patent and it is very profitable, why doesn't anyone set up a company to manufacture and sell it cheaper in the US?

Same question with epipen.


The drug was repatented with the delivery mechanism, as soon as the original patent expired.

It's the usual practice to keep novel delivery system/drug combinations off the market until the original drug patent expires, thereby extending the profitability of the patent, at the cost of users suffering medicine that is consequently decades out of date.


I think a similar issue applies with Epipen. There is an alternative, Adrenaclick (still expensive but not quite as bad), but because the delivery mechanism is different the prescription needs to be written differently.

Transdermal delivery unfortunately seems to be underexplored and very expensive in general. Transdermal estradiol is another one that is much more expensive than the pill form but is better in terms of safety. Generic patches available outside the US are less expensive (than patches in the US, still quite a lot more expensive than pill form). I'm not sure if generic patches are completely unavailable in the US or if they are just also quite expensive.

Melatonin is another case where transdermal delivery can be helpful, but it is difficult to find and fairly expensive (not quite as bad, though).

Beyond delivery mechanisms, drug companies also create modified forms of a drug (prodrug or metabolite or slightly different but similar substance) that have small advantages over the previous version. Again, these can't be substituted and doctors need to know to write the prescription for the form available as a generic. Best for the drug companies is when the origional form is pulled from the market by the FDA right after the patent expires, as happened with the antihistamine Seldane/terfenadine (replaced by Allegra/fexofenadine, a metabolite).

In other cases where out of patent drugs are not available as generics it is because the market is small and the current manufacturer can instantly drop their price to match if a generic appears, making it likely that anyone who attempts to make a generic will loose money.


Can you not just get it from an online Canadian pharmacy?


I hadn't thought of that before, but from searching today, it doesn't look an actual 'canadian pharmacy' is findable among the colossal numbers of non-canadian companies shifting cheap generics.

And, since this isn't a generic, or even a pill that can be copied, they aren't stocking it. :(


It's much easier to avoid detection, since the only laws being broken are when you actually make the drug. This is in your home, so you can feasibly break no laws in the view of anyone (as opposed to buying from a Canadian pharmacy and running the risk of USPS catching it).


Consider this story that mades the rounds recently as well: people using antibiotics marketed for fish because they can't afford or get access to anything else.

https://motherboard.vice.com/en_us/article/bjxwma/people-are...


Also very popular amongst survivalists.


I think a middle ground is sourcing them from private chemists on Alibaba and then getting spectrometry tests done to verify purity


Agreed. When you actively advocate for this, do you face moral responsibility when someone prepares it wrong and dies?

(I’m pretty sure the legal answer would be yes on so many fronts)


The moral answer is obviously no, given the context in which we live. That the moral and legal answers are completely opposite of each other is telling.

Imagine a natural disaster happens, and the strong hoard more water and food and shelter and medicine than they could ever use in a million lifetimes and protect it with guns. Then you tell the poor "in an emergency scenario, here are some options to keep you and your children alive a few more days that aren't totally safe but are better than nothing. Your makeshift roof might fall down in a bad storm, your food won't be perfectly clean, but it's better than doing nothing and waiting to die".

This is what is happening in the US. In this analogy, the natural disaster is free market capitalism, the strong are the ultrawealthy owning class, and the guns they use to protect their property are the police and legal system, who provide the violence that is inherently necessary to keep order in a massively unequal society.


>the natural disaster is free market capitalism

Government-protected monopolies (i.e. drug patents) are almost the antithesis of free-market capitalism.


No they are the very definition of free-market capitalism. They are property, and property rights are the entire basis of capitalism. In particular, private ownership over the means of production (which is the definition of capitalism) requires the government grant monopolies to these owners.

Every property right is a government-protected monopoly; without these government monopolies what you have is an end to private property which may be desirable but is certainly not free-market capitalism, it is communism.


Except that our current health care system isn't anywhere close to free market capitalism.


It is the closest healthcare system in the developed world to free market capitalism since every other country has socialized medicine; a system much more free-market than ours would create an untenable hellscape for the vast majority of the population that would be voted into oblivion or cause massive riots and death. We sit at the most extreme free-market end of possible healthcare systems that could feasibly exist in reality.

Imagine a true free market healthcare system. Or just one step further than ours: no medicare. Imagine if every middle-aged middle or lower class American had to, as their parents age and require more healthcare than anyone can feasibly afford, choose: bankruptcy and permanent insurmountable debt, or watch your parents die knowing you chose not to stop it. What glorious freedom.


This all might sound like a plausible narrative, until single payer comes along, costs don't come down but go up and now we the debate will be which medical procedures will never be covered by government.

Medicare costs 17% of GDP and it has 44 million people. If you expanded medicare to every single person in america (10x), how much do you think the GDP cost would be then? And what do you think will be the prescription at that point?

Its also a ludicrous proposition to say that because its closer to free market, thats what makes it worse compared to socialized services. Its qualitatively different because it has tremendous regulation and rules. And the proposed solution is to add more regulation.


This is quite false on many levels.

The problem is actually created by the government in the first place. If you fix the length of the patents or eliminate the patents in the first place the cost of drugs will drop close to the cost to produce them.

Monopolies are well studied in economics and the effects of monopoly pricing due to government granted patents are what we see here, this is a government created problem not a free market one.


If you don't misrepresent it then I can hardly see how. Does the writer of a recipe book incur blame if someone undercooks their chicken?


Agreed. When you actively advocate for this, do you face moral responsibility when someone prepares it wrong and dies?

That risk exists no matter what you "actively advocate" for. When you actively advocate for Obamacare, do you face moral responsibility for those who were forced to take a much lower-quality insurance policy because the premiums on their existing unsubsidized policy doubled?

Or, when you actively advocate for the repeal of Obamacare, do you face moral responsibility when a patient who can no longer afford insurance skips a critical doctor visit and dies as a result?

Because humans are not mindless programmable automatons, mere advocates should not be held responsible for other peoples' actions. Otherwise, we'll end up throwing lawyers in jail for successfully representing guilty defendants who go on to commit further crimes.


I don't know that the legal system necessarily cares about morality or moral responsibility. It seems like the only criteria that would matter would be legal responsibility, whatever that standard might be.


Or the criteria: "which moral stance makes me the most profit?"


If you take actions which a reasonable person would expect to cause harm to others, there is a legal dimension there ranging from civil liability, to the extreme of 2nd degree murder via “depraved indifference” statutes.


Good points.


It isn't always about whether the legal system cares. They're asking whether or not moral people should care. Those can be very different.


Does the manufacturer of a gun face legal responsibility when someone uses it wrong and dies? An automobile? A swimming pool?


Of course yes. There has to be a deterrent for the snake oil salesmen and other dangerous kinds.


> super awesome.

This is not super-awesome. Humans have made incredible progress by specializing and optimizing, and this process improves productivity, efficiently, and (most importantly when it comes to medicine) safety.

The idea that we will have people taking the risk of getting sick or dying because they are not able to manufacture drugs with the same purity and potency as pharmaceutical companies shows there is a huge problem with the status quo.


Yes, that also seems pretty clear. But we are here, and this is now. Complaining is easy and feels good, but let's talk practical solutions.


>but if you're offered medicine with 95% efficacy that you can afford

But it's not clear at all this is the case here. The article itself notes that it's unknown whether anyone has ever used any of these DIY medicines/medical devices, let alone how well they actually work. For all we know he could be pushing complete nonsense that kills people.


He could be, but.. it's not as if all federally-sanctioned medicines are not complete nonsense that (don't) kill people, either. Let alone merely having greater iatrogenics than benefits. Relatedly, when doctors strike, mortality rates decrease [0]. Plus, very useful medicines that are deemed too unsafe to become publicly consumed may be totally safe for subsets of the general population, e.g. based on differing expression of enzymes, or other phenotypic differences.

If you are (more or less) coping just fine with a health problem, (most often) you shouldn't really take any medicine whatsoever, regardless of whether or not it is approved.

Only if you are distressed and desperate can you (a priori) expect medicine to do more good than harm. And if you are in that category, and the medicines that exist officially did not help, then you must make other attempts to rectify the problem in order to avoid danger.

Admittedly it's not much of a source of relief, but the good thing about the nature of hobbyist tinkering networks is that information about dangers spreads fast, as well as information about discovered panaceas (both when the results are replicated in their favor, and when they falsify the panacea).

[0] https://www.ncbi.nlm.nih.gov/pubmed/18849101


When drug companies issue patents, do they not also publicise production methods?


It depends on the scope of the patent. But to some extent, kind of. See, e.g., the patent for an adalimumab (Humira) formulation https://patents.google.com/patent/US9085619B2/en. The patent discloses materials and methods for creating a formulation of the drug.

The real issue is probably that there are so many moving parts, especially when you get to the more complex drugs (e.g. antibodies). You would have to go through a million patents to find all the information required to create the actual molecule and also get it in a state to put into your body.

And even with all the information, it is unlikely anyone is sufficiently resourced (whether it's money, tools, or know-how) to actually make something viable.


as vonmoltke suggests, even if you've got some chemical synthesis procedure laid out in a peer reviewed journal, you are, in the best case, expert man hours away from successfully duplicating it. and you'll only know you've successfully duplicated it if you can run the result through really expensive analytical equipment to confirm that 1) you made the stuff you wanted to make and 2) it doesn't have impurities that are problematic.

(as a minor defense of the pharma companies, you're paying them not just to do a bunch of organic synthesis for you, but also to do ongoing QA that the synthesis process is working correctly. and not all processes are equally easy/amenable to industrial-scale duplication.)


Obviously this is true. There’s much that goes into industrial synthesis that someone with a setup like his at home just can’t currently reproduce, and safely.

What I find most dubious about the article is the lack of attention to synthetic biology. Because QA in that sense can become say, “this modified organism can produce the drug in question under most conditions and all future populations will carry the new genes with X% assurance” - ONCE -and you’re done.

This is quite possibly the real Pharma killer, IMO.


But only kind of. Even if you could get a strain of yeast to produce a specific antibody 100% of the time, how reliably could you get the yeast to grow? If you can get it to grow, how reliably can you extract a enough of the antibody to form just one dose? If you can extract, can you get it into a formulation that is pharmaceutically viable? Its not just about synthesis.

There's so much tooling and expertise that goes into front end, back end, deployment, db, QA, etc ,etc, etc just to get one app going. Why would would drug deployment be any different?


Well, yes you’re correct, there are associated complexities I’ve glossed over. My point however is simply that all of these complexities only really need to be solved once by an expert or team of experts such that non-experts can then utilize such a biotechnology (“yeast strain”) to produce some medicinal compound or other useful engineered metabolite. A yeast strain that can’t be reliably cultivated by a non-expert with relative ease and safety (in a non-laboratory) wouldn’t make the cut, in theory.

Also the same semi-synthetic organism could be applied in traditional pharmaceutical process settings as well, if for no reason other than cost reduction (and probably workforce reduction as well). So even “big pharma” has some incentive to contribute to this sort of technology.


It isn't even the basics of the synthesis chain that are difficult. Most (small molecule) stuff a lab chemist could whip up a batch of given a bit of time and reasonable access to precursors.

But this is exactly like saying "Reddit is just a few SQL queries, a reasonable programmer could whip up their own version in a weekend." Just like there is only one reddit/StackOverflow/Facebook even though plenty of people have the same basic idea, even knowing the chemical formula doesn't help that much. The trick is in the execution: generating reliable quantities of reliable strength and without any contaminants.

There is a whole field, process engineers, devoted to this quite difficult problem.


Generally, no. Even if they did, based on my experience with process-sensitive non-pharmaceutical products it takes a lot of experimentation and refinement to execute the process correctly.


If this is anything like open source in software (in the beginning) then many either never get to compile the dependencies needed to build from the source or run into hardware incompatibilities and incompatible derivate packages with all the ensuing bugs like blindness, deafness, and more serious malfunctions. And when it works the functionality will be severely limited. I'm half joking, but this will need a huge caveat emptor.


It's dangerous so far. I'm still all for better information and more diy. People will understand their health and real value of products better.


Collapsed?

Or were supply lines selectively destroyed by market-cornering adversaries, knowingly, according to the degree of “demand” which might be extracted?


> “To deny someone access to a lifesaving medication is murder,” he said. And “an act of theft [of intellectual property] to prevent an act of murder is morally acceptable.”

I agree with the conclusion, but for a different reason. "Theft" is the wrong way to think about IP. The economic function of IP is not to protect producers from consumers, but to protect producers from free-riding by other producers.[1] Thus, for example, stealing pills does not offend a drug creator's IP monopoly. Teaching people to make their own pills, who couldn't afford pills anyway, does not really do so either. It doesn't implicate the real purpose of the patent monopoly, which is to keep some other company from profiting by free-riding on the R&D of the original drug creator.

[1] To use a copyright analogy, copyright does not exist to protect content creators from downloaders, but to protect them from companies like Youtube, which make their profits by selling other peoples' content.


> The economic function of IP is not to protect producers from consumers, but to protect producers from free-riding by other producers.

The function of IP, from a government point of view, is to promote the useful arts and science and to ultimately make them available to the public after a limited amount of protection to the creator. Otherwise, there's no purpose in the government being involved in enforcing monopolies.


Promotion of the useful arts and sciences is the language the framers used, but the framers didn't know much about economics. The economic function of IP is to address the market distortion that could result if people were permitted to free-ride on the capital-intensive R&D or other people.

The economic definition is also far more useful. Who knows what specific policies will result in "promoting the useful arts and sciences." Preventing free-riding is a more concrete issue that can be addressed with specific policies.


If you're making an economic argument to justify the existence and nature of copyright law in today's society, which in itself I have no problem with, then surely you also have to consider that exponential propagation via entirely non-commercial sharing could still severely undermine the commercial value of a work. If that sort of work then becomes prohibitively expensive to create, doesn't that mean copyright is not doing its job as an incentive and everyone loses out? After all, if I make the next great independent TV show, it doesn't much matter whether 99% of my potential market sees it on YouTube or just torrents it, if either way those potential customers no longer pay me in return for enjoying the work. This seems counter to your original position that the economic function is copyright is about rival producers and not consumers.


IP lawyer here. Rayiner is correct, but he left out one piece of the explanation of why it's thought to be important to keep out free riders: The rationale is that, when innovators make significant investments in R&D, those innovators need a period of time in which to be the only ones able to sell the benefits of the innovation. Otherwise, free-riding copiers, unburdened by the innovators' R&D costs, would compete on price, which would drive prices down to competitive (i.e., marginal) levels that would not allow the innovators to recoup those R&D costs.

And here's the important part: Such rapid price reductions, it's said, would discourage future investment in R&D, because innovators and their investors would think "why bother; I'm not going to donate my time and/or my capital for no return, just for the sake of being a benefactor to humankind."

A simple analogy: Why bother spending the time and money to plant and raise a crop if your neighbors can come in and harvest the crop without paying you — among other problems, you'll be far less inclined to pay for the seeds and fertilizer it would take for you to raise the next crop.

So goes the theory; the extent to which that theory adequately models reality is something on which I'm not competent to opine.


The purpose of granting patents historically was to incentivize innovators to bring their knowledge into the public domain in exchange for a monopoly for a certain period of time. Before patents, there was a disincentive to sharing your knowledge as others would free ride on it so inventors would just sell their products on their own and their knowledge would likely die with them. Imagine you developed penicillin but there were no patents. You just sell it and never tell anyone how you created it.


I have to disagree on both counts:

1) Preserving a reliable institution of private property is also a "public goods problem", and thieves (of physical goods) are free-riding in a very analogous sense (disrupting the very system that enables the production of things-worth-stealing). That free-riding is exactly what makes piracy intuitively feel like theft.

2) Enabling the down-low production of a drug does disrupt the monopoly that drug researchers depend on to justify doing that research. It is therefore likewise free-riding off of their work in discovering exactly which compounds (by which methods) produce useful drugs. Where a producer or a consumer obviates the monopoly isn't relevant.

Now, I agree that it's a matter of scale: a few hobbyists won't make a difference, but if one day someone magically made it possible to reliably produce Viagra in your basement, then Pfizer would definitely care about that and revise downward their estimates of future drug returns upon learning of the possibility.


Are these outcomes you describe actually bad? While I believe in the rule of law, the fact is that law has been bent to serve the wealthy and powerful.

Perhaps such lawbreaking is simply the symptom of the disease as Dr. Prasad says, which is (patent laws that allow current) drug pricing.


I was only speaking to rayiner's a) attempt to break the analogy between physical theft and piracy, and b) insistence that teaching DIY production of patented drugs "doesn't offend" the monopoly.

But yes, I strongly believe that it's a very bad economic model that insists that drugs -- or any physical good for that matter -- should (in any sense of "should") be sold at marginal production cost.


I disagree. Not sure how you got from my position to yours.

The patent system is broken. IP laws are far too powerful and some things should really be sold at marginal production cost + a small markup for distribution.


No markup for cost of capital e.g. factory equipment to manufacture something?


> I agree with the conclusion, but for a different reason. "Theft" is the wrong way to think about IP. The economic function of IP is not to protect producers from consumers, but to protect producers from free-riding by other producers.[1] Thus, for example, stealing pills does not offend a drug creator's IP monopoly. Teaching people to make their own pills, who couldn't afford pills anyway, does not really do so either. It doesn't implicate the real purpose of the patent monopoly, which is to keep some other company from profiting by free-riding on the R&D of the original drug creator.

I've always wondered about this line of reasoning. Drug is made that could save a life, but is put behind an access and paywall that would prevent person from living. So one steals this drug or makes it in violation of patent rights. Now, logically theft is illegal and stealing it is theft.

However we also have another area of law called "Justification" - it "because committing the crime advanced some social interest or vindicated a right of such importance that it outweighs the wrongfulness of the crime." (source: https://en.wikipedia.org/wiki/Justification_(jurisprudence) ) . This topic came up with the recent ex-marine who "stole" a truck to drive the shooting victims to the hospital, at the Vegas Massacre. On the face, he stole a vehicle. However it was to save lives, which is justification.

So yes, it is theft or violation of patent. However this is in the face of living or dying. Whomever would state this defense would have to admit complete guilt to the court, and rely on this as the defense.

But if this won, it would say that everyone has the right to life-saving drugs, but those that can afford it have to pay.


Open Insulin @ Counter Culture Labs: https://experiment.com/projects/open-insulin

If you want to look at templates for your own immunotherapy, CRISPR, optogenetic tools etc.: https://serotiny.bio/notes/proteins/

Which, once built can be then be ordered as DNA, shapeways-style using: https://serotiny.bio/notes/pinecone/

The cure for certain kinds of blindness, just approved by the FDA yesterday is, in total, a well-delivered sequence of ~10,000 base pairs of DNA (mfg cost @ 7¢/bp = $700): http://www.businessinsider.com/spark-therapeutics-hereditary...


Oh man. I agree with your sentiment, but this is a remarkable over simplification!

The sequence may cost 700$ to synthesise. But it's delivery vector is a virus. Synthesizing the DNA, encapsulating the DNA in the virus.. not trivial stuff.

While I agree that drug prices in the US are absurd beyond comprehension or justification, and I've had a ring side view of life sci research, drug development as well as the drug pricing; to posit that, hah, a path breaking gene therapy product just costs a few hundreds or a couple of thousands to produce is misrepresenting the complexity as well as the significance of the achievement.

The amount of research (largely public funded but for the clinical trials, which may also have been public funded: no idea) to get to this point is staggering. the company also likely invested large amounts to Shepard a lab possibility into a viable treatment. FDA approval is a big deal because they are, justifiably, exceedingly strict. It is an arduous process.

There has to be a better solution, which would start with allowing the US CMS / Medicare & Medicaid to negotiate drug prices with the manufacturers. The problem is policy.


It is a bit of a simplification - but not by that many orders of magnitude ;). The really hard part (like small molecules) is the R&D to come up with that sequence. Unlike small molecules though, most people have the technological prowess to brew beer, make yoghurt, or buy an espresso. I've encapsidated plasmids into viruses for viral delivery in the lab and it took a day or two of work in a BSL2 hood to produce thousands of units of the virus - delivery in that case was relatively trivial; though you are right, I've never delivered the virus to humans - and that is not (yet) trivial. But neither is it as complicated as even the most basic of surgeries - literally. As far as I've heard, the 'treatment' to cure blindness with the above (and similar therapies) is a puff of air (containing aerosolized AAV) into a patient's eye, once - while alternative treatments are things like a syringe inserted behind the eyeball every few weeks for the rest of one's life.

I'd argue that the significance of the achievement of these modern gene therapies is in just how simple the technology is relative to other medical procedures. In this case 'simple' is very much a result of an astounding amount of knowledge and work. It's so powerful precisely because it is simple.

And to be clear - I don't actually think anyone should be trying to cure their own cancers with garage-built immunotherapies today. Home-grown insulin-kombucha, maybe... But the technologies of today realistically enable that possibility in the nearish future precisely because they are so elegantly built. Recouping the cost of that R&D to produce something so simple & powerful is always a challenge - and that challenge is far more social in nature than scientific.


// offtopic

BTW, big fan of what you and serotiny are trying to do. I've just moved back to my home country.. am dabbling in other stuff at the moment, but the dream is to join with friends and start an automated high throughput industrial biotech company. PhD work used a lot of robotics and high throughput screening & mutagenesis and what have you.. and services like serotiny give me the comfort that my pie in the sky idea has a chance..


Again, I don't disagree with you. But shepherding a drug or treatment though the FDA is a mission in itself. It is expensive. The cost of goods may be relatively low once the process of production at scale is worked through, but it is hardly trivial.

Notwithstanding what I've said, I genuinely find it appalling that these drugs are priced at five figures. That's just criminal. In the range of thousands (or even 10s of thousands, if it's a single shot treatment), I'd think the pricing is justified. Maybe if it's a rare disorder, charge a little more.

But the travesty in the US system is that the govt., Via Medicare & Medicaid, is just not allowed to negotiate on costs. That's what the UK NICE does. The American system is insane!


Insulin is something we get for free(as in covered by taxes) over here in at least the UK(where I currently reside) and Sweden, where I am originally from and where I was first diagnosed. I don't know what I would do in a society where the medication I need to live a decent life, let alone survive, would cost me an arm and a leg(appropriate phrase in this case :P) to get.


Regarding Counter Culture Labs. It looks like they post update videos periodically, but do they have something on the market yet? What does their insulin cost per IU?


We used to have government-funded research programs at universities, now we have for-profit big pharma which by definition creates treatments that cost more. It could be argued that this was by design. So open sourcing cures like this is a natural free market reaction to that.

Since most of the cost of any new medication today is research, we should decouple that cost from production.

The main reason this doesn't happen is that conservatives preach personal responsibility, so want people with hepatitis C to pay for their own treatment at $80,000 a pop. But even if the cost to develop that cure was a billion dollars, that's a tiny amount for the government to absorb. We should be having a space race to cure the worst diseases and then give those cures to the world for free (or nearly free), much like penicillin or the polio vaccine.

Please keep in mind that I'm not politicizing this - it's already been politicized. I'm just explaining what happened.


The NIH budget, the largest US government funder of medical research, is bigger now than at any time before 2000 (although it's down a bit from the 2003 peak, adjusting for inflation).

Source: https://www.aaas.org/sites/default/files/NIHMech_1.jpg


Thank you, if that's true then I stand corrected. Something to consider though is the NIH is under constant threat of cuts which might discourage going deep on hard problems:

http://www.npr.org/sections/health-shots/2017/03/16/52039014...

Also $30 billion is only 0.75% of the projected $4 trillion federal budget for next year. Just percentage-wise this seems like something that should be low on the list for cuts.


You are arguing with a straw man. The other side doesn't believe that a dollar spent by the government is as effective as a dollar spent by the private sector.


If that is the primary obstacle, you can have a design which assigns money to a private research organization to develop drugs for government.

Also, current pharma will be biased against any cost effective solutions as this will cut their margins. There's got to be some alternative path to research and bring in these treatments to the public.


I 100% support a drug bounty program, where the government puts up a huge bounty (I.e. $1-3bn) for diseases where cures/treatments are needed, and pharma companies compete for those bounties. Victors would get the full bounty, and the govt would get the rights to the drug. Would allow the public to incentivize treatments that are best for public health, since companies are incentivized to create long-lasting, expensive treatments vs 1-off cures. And would decouple end-user price.

For instance, i think we would have found a vaccine for HIV by now if antiretrovirals weren’t so damn profitable over the lifespan of a patient.


Of course, that money would come out of your taxes as a US citizen. And since you'd still have to pay for the drug (even at the reduced price), you would just effectively be creating socialized medicine.


The bounty could be for all drugs, some drugs, or just the super important ones. Scale the system to however much socialized medicine you can take.


If that is their goal they are bad at it. Medicaid is one of the largest payers for Hep C treatments.

http://annals.org/aim/article/2362306/restrictions-medicaid-...

Billions of dollars a year since 2014.


>A decade ago, while he was volunteering with aid workers in El Salvador, Laufer said a nurse at a remote health outpost told him she’d run out of antibiotics and birth control pills — cheap, generic medicines that even her suppliers couldn’t immediately replenish. “This is ridiculous. They should be able to build their own simple lab” to make the pills, he recalled thinking at the time.

This is pure crazy. If these drug were generic (versus patented), the problem of getting them to El Salvador is not a price problem, it's a supply chain/infrastructure/corruption and theft/political (in the case of birth control in a very Catholic country) problem. Some of these drugs are highly complex and building, supplying, and feedstocking chemicals for a lab to make them is even harder than finding the money for a $5/pop or less prescription


I would be horrified to think what kind of havoc DIY birth control pill, s that were not manufactured correctly, might do.

I would say a better solution would be to start a not for profit manufacturer, but when India produces dirt cheap genetics, there does not seem much point.


For people who are interested, it's referenced in the article, but NurdRage did a synthesis of Pyrimethamine "from scratch".

Only took 2 years and ~$22k, but of course, replicating his synthesis would be a little bit easier... for another PhD Chemist.

https://www.youtube.com/watch?v=ddCuWX4vtOA&list=PLU79801KtV...


Not only “from scratch”, he even did it from widely available household products.

I think he said in the last video that it would have been cheaper and faster if he had bought some of the precursor chemicals directly instead of having to make them first.


Well, from my limited 100-level-chemistry-plus-youtube education, he could have just bought the immediate precursors directly for pyrimethamine itself, i.e. possibly even 2-(p-chlorophenyl)-3-oxopentanenitrile, guanadinium chloride, and Trimethyl Orthoformate, which would make it a 3-step synthesis instead of a 17-step synthesis, so yeah, pretty easy. At the very least he could cut out ~2/3rds of those steps for a 7-step or 6-step synthesis.

So cheaper by easily an order of magnitude, possibly ~$100 a batch or less. Of course, if you want FDA grade instead of technical grade your prices for everything skyrocket and your workup has to improve a bunch.


Interesting assertion from the FAQ on Michael Laufer's website[1]:

> Q: What about quality control? A: It’s important to know that making small quantities of a chemical is vastly different than making it on an industrial scale. The chemistry isn’t even the same. This is a big reason why chemical engineering is an entire field of study. With smaller reactions, while you do have to be more precise in your measurements sometimes. There are fewer things to go wrong.

Why would making small quantities be vastly different than making it on an industrial scale?

I've heard the same thing about cooking and baking. Supposedly, if a recipe calls for 1 tablespoon of baking powder, then you scale it up 50 fold, you can't simply use 50 tablespoons of baking powder. The claim was that you had to use way more baking powder or much less (I forget which). It sounded like nonsense, but now I'm wondering.

[1] https://fourthievesvinegar.org/faq


The most obvious element is heat: heat production grows at the same rate as volume, but heat dissipation grows at the same rate as surface area. So larger scales invariably end up running hotter (particularly when energetic exothermic reactions are involved), and temperature plays a major role in the kinematics of chemical reactions.

The same surface area/volume issue in bulk also plays into reactions that happen at the margins of materials rather than the bulk--metal-catalyzed reactions are a common example.


For industrial scale, yield becomes an much more important concern. There are also physical considerations like the square-cube law.

I'm not a chemist but several times I've seen comments along the lines of "you can do this at home by doing (simple procedure), however in the industry, it is done like that (complex procedure)".


Large scale production has very different requirements than small scale synthesis in the lab. Getting rid of heat is much easier on a small scale, and not all methods that work on a small scale can be scaled up.

It's a ridiculous answer to the question of quality control, though. It doesn't really have anything to do with that.


I'm also curious about that, the only reason I can think would have to do with an incomplete reaction because of the size of the batch although that would mean the ability to mix a batch of X depended on the amount and I don't know why that would be.


Synthesizing some simpler drugs sounds feasible even with amateur equipment, but still far from trivial. But I can't see that working reliably without the ability to do proper analytics on all steps. And regular people don't just have an NMR spectrometer at home.

Chemical reactions usually don't have a single product, other side reactions are possible. And they also don't use up 100% of the educt, so you have to get rid of that as well. Purifying your products and making sure they're actually what you want is essential.

Getting the dose right is also hard if you don't know how pure your product is, and if you don't have analytical scales (or work at a very large scale that a kitchen scale is enough).


> And regular people don't just have an NMR spectrometer at home.

I've only watched NurdRage videos, but it seems like sending samples to commercial NMR labs is pretty feasible as he does that regularly. So that might not be as big of an issue.


I can't imagine the size of the overlap between people savvy/interested/experimental enough to attempt this sort of remedy and those desperately poor AND ill enough to do so. While the idea of bio-hacking as a hobbyist or proof-of-concept is becoming less and less uncommon, and people generally appreciate efforts to raise awareness toward a broken and inefficient healthcare and insurance system, attempting to "market" that DIY process using a fancy name, logo, and "mad scientist hacker anarchist intellectual" persona seems disingenuous at best, and potentially dangerous.


Honest question: What does it even mean to be an anarchist these days? What is the default "anarchist"? Because Wikipedia isn't really helping.


“”” Noam Chomsky: Well, anarchism is, in my view, basically a kind of tendency in human thought which shows up in different forms in different circumstances, and has some leading characteristics. Primarily it is a tendency that is suspicious and skeptical of domination, authority, and hierarchy. It seeks structures of hierarchy and domination in human life over the whole range, extending from, say, patriarchal families to, say, imperial systems, and it asks whether those systems are justified. It assumes that the burden of proof for anyone in a position of power and authority lies on them. Their authority is not self-justifying. They have to give a reason for it, a justification. And if they can’t justify that authority and power and control, which is the usual case, then the authority ought to be dismantled and replaced by something more free and just. And, as I understand it, anarchy is just that tendency. “””

http://www.alternet.org/civil-liberties/noam-chomsky-kind-an...


Vs the classical conservative world view in which order, even if it's unjust, is usually better for everyone, even the people on the bottom, than chaos; and that dismantling power structures, if done suddenly or without care, is more likely to result in chaos than in a new, more just, order. I've been wondering lately if there is room for the notion of a conservative anarchist, who questions hierarchy but dismantles carefully and incrementally.


I've been wondering lately if there is room for the notion of a conservative anarchist, who questions hierarchy but dismantles carefully and incrementally.

Sure! Those are the collaborationists, and are the first against the wall when the revolution comes.

I'm only half-joking, see what happened to the Mensheviks in 1917-1921.


Sad but there's a lot of truth to that: if you are fighting against a nation state with an army, you have to have your own army to fight it. And on the day when you are victorious, you'll find yourself sitting on a large plot of land and people and the only intact organization around will be.. your army. And the government you form will closely resemble an army in form and function, and the high ranking members of the army will tend to become high ranking members of the new government. Hardly a blueprint for universal freedom. That's what tends to happen to violent revolutions.


The natural response would be instead of fighting a government with an army, experiment and build the structures that you would like to see, without dogma, learning as you go. When these structures solve enough problems for your community, a democratic country may peacefully transition.


Yes!


Some strains of Daoist thought could be construed as a conservative anarchism, although such conservatism would be completely at odds with conservatism these days.


> Vs the classical conservative world view [...]

Your phrasing implies that Chomsky supports acting "suddenly or without care", which is not the case at all.


Thanks, that was an excellent answer.


Erich Fromm's quote about rational VS irrational authority is helpful: http://fromm-online.org/en/autoritaet/


Oh man, I'm a freaking anarchist. Thanks for the heads up.


The definition I use is 'a system lacking a state or ruling elite.' If you want to include anarcho capitalism you probably want a more general definition though.

I think I derived this definition from David Graeber's work.

Also some people choose a definition that emphasizes the process rather than the features. Those kinds of definitions are like 'removing unjust hierarchy or domination' or something to that nature.


I would argue that definition is far too broad. I would define anarchism as a society in which the amount of power that any person can have over another person is severely limited. Not only would government have to be greatly weakened, but property rights would have to be greatly weakened, corporations, churches, political parties and all kinds of other organizations would have to be broken up and democratized.


I'm not sure if this is where you were going with this, but I think this is a subtle attempt of the author to discredit or impugn the target of the article.

They could have used the term "libertarian" or "protester" or "political objector" but they go all the way to use "anarchist" as if people making medicine to save their own lives or maintain their own autonomy somehow equates to anarchy.

This to me illustrates in a profound way many problems with health care, and to some extent, politics today: people are told by a privileged, protected elite that they are to take responsibility for their own welfare, but then if you actually take that seriously, you're branded an extremist.

The powers that be--drug companies, the FDA, the federal enforcement agencies, the pharmaceutical companies, physicians--are unwilling to open up competition to reduce their monopolies and regulatory capture. They are squeezing the last drop of blood out of people to line their own pockets, and using safety as a mantra to do so.

To me, this dynamic is so obvious and it's unclear to me why this doesn't get more discussion. People don't have any control over their healthcare, no ability to take responsibility for their own health, because they're legally unable to do so, because it's not in the financial interests of powers that be.

People lash out against homeopathy and antivacciners, but the obvious is staring us in the face: when you have no autonomy in the realm of traditional, scientifically-grounded healthcare paradigm, your only option is to reject it in favor of something else.

Same here: if people have no options to go to, they need to do it themselves, or go without medicine. People do this not because they want to, but because their back is against the wall.

The current regulatory regime, all the way from the FDA to current licensing regulations to drug enforcement, is completely and utterly broken. Not at risk of breaking, but a complete failure.


The attempt was not that subtle. IMO the author spends a considerable amount of time openly mocking Laufer, with the clear implication being that if you cannot take the man seriously how can you do the same for his ideas.


Just read the Wikipedia for Anarchism[1] and feel that it correctly reflects what it means. The one thing that is striking with the article's definition of anarchist is that it seem to refer to anarcho-capitalism (similar to neoliberalism) more than actual anarchism. It at least paints Laufer as a hypocrite if he were to identify as a "true" anarchist since "Anarchism is usually considered a far-left ideology" (Wiki). See the references to upperclass restaurants and upperclass behaviour such as drinking champagne and eating scallops at pricey restaurants.

A common misinterpretation of the term is believing that anarcho-capitalists and anarchists are the same, they're not. They're more often opposites.

1. https://en.wikipedia.org/wiki/Anarchism


In a nutshell: No masters, and no slaves.


https://theanarchistlibrary.org/library/david-graeber-are-yo...

Favorite quote: "Anarchists are simply people who believe human beings are capable of behaving in a reasonable fashion without having to be forced to."

Other favorite quote: "human nature is such that they cannot be trusted to do so when given power over others. Give someone such power, they will almost invariably abuse it in some way or another."


What on earth would give a person that impression?


Well, if you're dealing with someone on equal terms, it sort of forces you to be fair with them. It's only when you have power over someone that the option of being a total bastard is available, IMHO.


I'm pretty sure the comment to which you replied was sarcastic.


It's what happens when you treat history as a story rather than a lesson.


>Then he took another sip from a flute of Taittinger Champagne.

What?

>Swaggering, charismatic, and complex,

Gag me.

>Michael Laufer has become a fixture in the growing biohacker movement ever since he published plans last year for a do-it-yourself EpiPencil — a $35 alternative to the pricey EpiPen.

That couldn't possibly go wrong, eh?

>It’s not clear whether anyone has actually ever used a homemade EpiPencil to prevent anaphylactic shock.

So nobody's quite crazy enough to try?

>But that seems almost an afterthought to Laufer’s bigger goal — trying to build a DIY movement to attack high pharma pricing and empower patients.

Or, judging by the tone of this article, his attempt to build his own ego.

This is ridiculous and crazy. It's incredibly dangerous to claim to have produced something life saving but not have any actual testing to back it up.

Even lesser drugs that are just designed to lessen symptoms or relieve pain could go horribly wrong if they aren't prepared properly. We have such strict medical requirements because of that.


I don't think people understand just how quickly the liver, kidneys, hormone levels, your whole body can be destroyed in the blink of an eye by bad drugs. I would say, I've seen more than a few HN contributors have a less than cautious attitude toward recreational drugs. Drugs, period, without proper knowledge and guidance can do irreparable harm to internal organs and should be treated with proper respect.


Absolutely whilst I was UK renal unit (after a transplant) an older guy was I the next bed as an emergency admission he had been taking zinc tablets in addition to his gp subscribed drugs and his kidneys had totally shut down due to some interactions.


Recreational drugs are one thing, synthesizing compounds yourself is another. The risk profiles are completely different.


On what do you base this (remarkable) claim? Synthesizing drugs to act on the brain is at least as dangerous as those for kidneys, liver, etc. More than a few amateur drug designers have pickled their synapses into broccoli.


I meant it the other way around; an amateur synthesizing compounds themselves is probably more risky. Then again, it depends on the substance.

It's hard to mess up sodium oxybate, but it's way easier to mess up methamphetamine, for instance.


Agreed that the article is a little too flattering to his ego, but what about people desperate for medical aid, can't afford it, and would probably end up with pain/death without this as an alternative? What should they do?


Not listen to this guy. As the article notes none of his ideas or creations have ever been tried by anyone, including himself, and require fairly sophisticated ability to set up and make.

In fact from the article it's not clear at all what exactly this guy is offering or how it helps anyone beyond his self-aggrandizing bluster.


Most people who are desperate and too poor to afford medications are also too poor to afford the tools and supplies necessary to make their own medications. I don't think this will solve the problem of drug affordability.


Buy time at a lab to ensure QC at all levels of production, which they’d need to do this safely? I’m sure lots of desperate people have the time, money, and expertise ro make that work.


the overall affect that Laufer strikes throughout the interview and article gives me a strange impression - it's like a kind of self-parody


I get the feeling that the author really dislikes Laufer. The whole article comes across as wanting to smear his character as a rich, egoistic crazy person with hubris. I don't know what kind of anarchists you got in SV, but wtf:

> He said this over lunch at an upscale French bistro in the Silicon Valley, where he orders Champagne and sauteed scallops. “If you really take the time to smell the scallops,” Laufer said, inhaling luxuriantly, “you can feel the ocean.”

I really disagree with the commentators that feels that this is an article aimed at lifting Laufer.


I applaud the goal, but the article paints him as a showy douche who mimes his own existence. Why does everything have to get defconn'd


i empathize with Laufer's goals and purpose and concept, but, er, judging by this article's description of the man, he seems highly idealistic and overconfident.

i personally wouldn't be ready to place my trust in his drug recipes.


You're still underplaying just how radical this DIY approach is.

Imagine you decide you are a modern day Robinhood, and you go around the U.S. breaking into medical facilities and stealing Epipens to distribute them for free to the general populace. You do this until you and your band get caught, and which point you go to prison.

At the end of your run every person who received a free Epipen got the same quality device as the people who paid exorbitant price for an Epipen. To the degree that you inspire others to do this, they are bound by the same risk of prison time. Finally, since the price you charged was $0 there is no financial incentive for copycats to distribute fake Epipens (or at least if somebody does they must be a bad actor with ill intentions, or they must charge a fee in which case potential buyers will rightly be skeptical of the product).

What the DIY chemist apparently wants to do is persuade non-experts that they can produce Artisanal Epipens that are ostensibly as safe as the real thing (or at least safe enough that the risk is overridden by the alternative). But that is only an argument for a doctor to use an artisanal epipen if it is the only thing that happens to be lying around-- it's not an argument for persuading the general public to practice and spread the idea of DIY non-expert chemistry.

DIY chemistry doesn't come with public policy expertise. It doesn't come with trained (and funded!) epidemiology. And if their DIY ethos goes horribly wrong-- as the "roll-up-our-sleeves-and-research-our-own-vaccines-schedules" movement has-- they won't have the competence in statistics to know just how dangerous their movement has become in terms of public health. Worse, where science tends toward rigor, verifiability, and a narrowly defined scope of research, these DIY chemists will likely be skeptical of the published canon and "wing it" by trying to do their own epidemiology (because after, ignorance and lack of training didn't stop them from being a chemist...)

Worst of all, unlike my Robinhood example there is no natural filter to keep otherwise good faith actors from making decisions that will have terrible consequences for themselves and others. To steal Epipens you've got to break in to a physical place and potentially physically harm or threaten a security guard. This filter keeps tens of millions of people who are no doubt convinced of the deep unfairness of pharmaceutical prices from becoming an angry and dangerous mob whose violence quickly outweighs the single benefit of redistributing epipens to the poor.

Based on that, DIY artisanal epipens are more risky and can scale into a public hazard more easily than just robbing a pharmaceutical warehouse. So I claim that casually encouraging people to make DIY epipens without a systematic, well-tested, and well-funded research regimen is more dangerous and irresponsible than just stealing extant epipens.

So if you're the type of person who rejects robbery out of hand, you probably shouldn't entertain the idea of Artisanal Epipens, either.


If anyone's interested in a fiction that partially explores this try Corey Doctorow's new novel Walk Away [1]. It's about people who 'walk away' from regular society. They to create their own high tech society because they completely ignore IP rights, and instead aggressively share techniques using the wiki model.

1. http://amzn.to/2ymP8EM


I imagine a curate Wiki of credible home non-invasive therapies and management regimens would garner more positive response than "anarchic" direct confrontations. There are tons of such therapies underwritten by medical researchers across countries. These infantile theatrics mostly subtract from sound cost containment.


DIY pharmaceuticals is ....well it sounds immensely dangerous. Not only is the chemistry frightening but quality and chemical availability. It reminds me of Naturopaths and herboligists claiming to cure and treat ailments with supplements. As much as I hate the pharmaceutical industry, I think it's best for now to leave the drug making to them.


DIY pharmaceuticals sounds dangerous. Sure! So is eating 47 teaspoon of salt, 480 bananas, or drinking 179 expressos [1].

If you happen to be unable to afford so much coffee, just rent a car and smash into a tree at 100 miles per hour. So driving cars is also immensely dangerous!

I really hate that nany state we are living in where an average 16 year old is lawfully allowed to drive 5,000 pounds metal machine and kill people at even limited speeds of 50 mph, but yet when it comes to DIY pharmaceuticals we immediately see a vision of most population dying at home because they mixed something wrong.

https://gizmodo.com/how-many-x-would-you-need-to-eat-to-die-...


[flagged]


Pressure on all sides to maintain HN norms here. "You don't insinuate someone didn't read the article on HN", it's in the guidelines in fact, take a look when you have some free time: https://news.ycombinator.com/newsguidelines.html

Otherwise, I think you'll agree that the threat of PhD level chemists making and giving these drugs out isn't exactly critical.


Given the level of education nowadays and the wide access to knowledge, I'm convinced that it's legitimate that the average person should at least have the basic medical knowledge, let's say equal to what a doctor in the 30's had known, and be able to treat 90% of the diseases that he/she encounter in his life.


There's also a much more conservative and narrowly scoped effort to help late stager cancer patients make their own therapeutic peptide vaccines: http://alunglife.com/goal-cure-cancer-method/


There's a guy who has a chemistry YouTube channel and synthesized Pyrimethamine recently, check it out:

https://www.youtube.com/watch?v=5kZi3J2S52E


Next up - DIY Lasik surgery.


Isn't the actual surgery in LASIK-style operations pretty much fully automated anyways? Feels actually quite a bit safer than DIY pharmaceuticals. And the failure-modes of LASIK seem kinda less worse than in pharmaceuticals too.


In German but here is a DIY dentist: https://www.youtube.com/watch?v=MrbyL6yMyn0


I got LASIK at 21. It was a miracle. It wore off at 31. I must've gotten it too soon. Back to glasses.


Nah, it just does that sometimes. I got it at 35 and it started to wear off 6 years later.


Sci-fi is increasingly struggling to keep up with reality.

Here's a novel with a similar premise (but more SF setting) that isn't even out yet: https://www.tor.com/2017/09/18/excerpts-annalee-newitz-auton...


my thinking on this is that science fiction authors are lazy and are not often scientifically trained; so they haven't been thinking about these topics at all. This is why science fiction is so dry and boring compared to neuroanatomy, molecular biology, neurophysiology, computational neuroscience, synthetic biology, etc.


Let's say that you need some pharmaceutical that's not available at a reasonable price. Perhaps because there's no generic available. Or because there are only licensed generics, priced just marginally less than the brand. And/or because you have crappy health insurance, or none at all.

Depending on the drug, the best option is either an equivalent from a compounding pharmacy, or one from a low-price country, such as India, Mexico, etc.

Making your own is only worth the hassle and risk if neither of those options is workable. The EpiPen is an unrepresentative example, because it's mostly about mechanics. With most drugs, you need to bulk out the active ingredient(s) to get a reasonably sized capsule or tablet. For capsules, with mannitol or whatever. For tablets, that plus binding agent(s).

The challenge is that thorough mixing is nontrivial.


I'm a bit skeptical about this. You should see what it takes to manufacture useful amounts of clinical-grade penicillin. It's fairly capital-intensive, and requires a special strain of the mold.


DIY pharmaceuticals will never be safe, unless the recipes are regulated, at which point there's no point to them anyway.

Imagine this situation: you Google for a recipe for a drug, and find two different recipes. Recipe A is the real one, while Recipe B will kill you instantly. The troll who posted Recipe B went around the internet claiming that Recipe B is real and Recipe A will kill you. There's no authoritative source to consult, because the actual recipe is patented. How do you know which is real?


Aren't patents published publicly? So you could just check the patent (Although it may require some knowledge of biology/chemistry to understand).


Make them both, sell them on the dark web, see which has repeat customers?


Lots of medicines are straightforward to manufacture, and as long as you're careful and follow the same sorts of risk-mitigating procedures and quality assurance steps that you would expect from a manufacturer, you would be served no worse by your own generic brand.

That said, ideally we could fix the medicine-specific patent law craziness (and the regulatory inefficiency which necessitates it). Obviously, the specifics are much more complicated than anyone with a side to pick is willing to admit.


People struggle to cook food for themselves. Just saying.


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