Looking someone in the eye and asking them if they really are accusing me of watching some of my family members die from diabetes, cancer, and heart disease while I was hiding the cures and collecting my paycheck is an uncomfortable conversation, but I’ve had it a few times.
The only counterattack has been that no, they’re not saying that I personally have these things in my desk drawer, it’s the higher-ups, you know, them.
“So how have I been working on these diseases for 25 years without rediscovering any of these cures?” I ask, and that generally winds things up. But I like to think (or to kid myself) that I’ve planted a slight seed of doubt.
You need as much conviction in your voice as the quacks have, though, and that’s not easy, because they have a lot. Science has the evidence on its side, naturally, and that’s a lot, but conspiracy theorists and their friends have something to believe in, and that’s a very strong part of human nature indeed.
Back in the 70's it was common knowledge that oil companies bought up patents for 100 mpg carburetors and buried them. I asked my dad (Air Force) about that. He laughed, and said the military had desperate fuel problems, and would not let any little ole' patents get in the way of getting their hardware running several times further on a tank of gas.
I didn't read that as a suggestion there's some secret AIDs vaccine kept locked away by big pharma, rather that many have died because of lack of access to the treatments that exist.
Yea I mean, it's part of a lyric from a song so it's debatable whether it's meant to be taken literally or if he just needed something that sorta rhymes:
A toast to the dead / For children with cancer and AIDS / A cure exists and you probably could've been saved / Sad to see medicine divorce morality / Corporate home-wreckers pimpin' up the salary
What about orphan drugs? It's true that more orphan drugs are being commercialized. But prices tend to be astronomical. Far better would be patent donation, and not-for-profit production.
That's why I said "not-for-profit" production. I mean, it's not like these drugs cost any more to manufacture than other drugs. It's that the patent holder seeks to recover their development cost on a much smaller sales volume.
Plenty of people make money off generics. Even with lower market share you can charge slightly higher prices, but not too high or someone else will undercut. Today they have a monopoly.
That's because those generics have already been through the capital intensive process of getting FDA approval. The monopoly is intended to incentivize actually bringing the drug to market. I suppose there are countries without this process, but I also would wager they do not produce nearly as many new drugs (or new orphan drugs) proportionally to the US
An orphan drug is a pharmaceutical agent that has been developed specifically to treat a rare medical condition, the condition itself being referred to as an orphan disease.
A rare disease, also referred to as an "orphan disease", is any disease which affects a small percentage of the population. Most rare diseases are genetic
Well, I was mainly talking about orphan drugs that aren't yet commercialized. Once they're commercialized, they're still called orphan drugs, but maybe that should be "formerly orphan drugs" or whatever.
And yes, one of the incentives to encourage commercialization of orphan drugs is extended exclusivity.
As an Australian, i.e. someone who lives in a country which doesn't assume that being poor is a good enough reason for someone to be allowed to die. As well as the brother of a scientist who often runs experiments involving the synthesis of new drugs, I had a torrent of extreme reactions to seeing that this site exists.
1. My immediate reaction was holy shit no, if a situation exists where your countrymen are trying to hack together potentially lethal drugs and medical procedures because you don't have facilities in place to save them, then whatever political decisions you are making, whatever trade deals you are signing, whatever wars you are fighting: stop ALL OF THAT SHIT AND FIX THIS FIRST.
2. Oh my god what a terrible way to die. I understand that this site is probably well-intentioned. I know that for someone with access to a pharmaceutical lab and who has experience in the small-scale manufacture of drugs intended for consumption by living creatures (experiments) including humans (clinical trials) it may make sense that we could just synthesise our own drugs. But failing to recognise that there are very real and very likely scenarios where people will die because you (or someone with your expertise) are not on hand to help them immediately if they fuck up.
I can't help but think that the existence of this site is a net harm to the world, there's just no way the risk calculation is the same between a chemical engineer and a regular chap who needs medication as to the possibility of just making it at home. Making it seem like this is a thing you think that you should do just sounds like bad advice.
But on the other hand, I'm so appalled by the ability of America as a nation to do terrible things such as let its citizens die from treatable illness, that this kind of makes sense. It just feels like the wrong problem to be solving.
I mean, how about focusing on fixing the broken medical system, avoiding killing all the people who aren't white and making it just a little harder for insane people to get guns. While you're at it, you might even want to try and drop "racist as shit" from the assumptions of the rest of the world about your country.
This is awful in that sense. But maybe it paves a way for viable market entry for otherwise professionally staffed organizations? Ie a knowledge base they don’t have to pay a license to access.
But that’s me groping for an upside. This speaks more than anything I could come up with what’s wrong with the current industry.
Sorry, I didn't mean to offend. I definitely don't think that the individual citizens of America are in any way inferior to those of any other country, nor do I think that collectively Americans are to blame for their current predicament.
While I don't really understand your point about showing gratitude.
1. Many of the major medical breakthroughs in recent history have nothing to do with "America", sure some of them might have happened there but that's hardly their defining factor.
2. Where in my comment did I imply that it was not disgraceful that American people where not enjoying the drugs we have in the modern world?
In terms of the whole homosexuality thing, no shit. It's also a problem that we are absolutely ruining the lives of the aboriginal population by throwing up barriers to progression and education at every turn and just treating them like second class citizens at best. Even worse that the way we treat our native citizens is how we treat refugees who we send to an unregulated island so we can beat the shit out of them and rape their children.
But just because there are parts of Australia that make me worry for this cesspit of inhumane bullshit, doesn't mean I can't also find it appalling that as a nation it seems impossible that america can't stop killing it's own citizens. Lethal weapons are sold at the local shopping centre, you can't get medical care even if you need it and God help you if your not white, you basically just need to factor "will get shot by police at some point" into your life plan.
Just because two countries are fucked up doesn't mean that you can't notice the stuff about another country and makes it fucked up alongside your own.
It's sad that the GP's post is showing support for Americans by pointing out that they should all have health care, and someone is triggered into believing it was an attack.
Probably should have thought about it a bit more before I put my first point first.
The major problem I have is with the implication that you can make your own drugs at home and it's safe, secondarily it's pretty concerning that there's actually a reader base for this information due to the countries healthcare system.
> gratitude to the Americans who paid for the invention of all the drugs you enjoy
Pharmaceutical companies are paid just as much per unit in Australia. It's just funded by the taxpayer, under the assumption that healthy people will eventually pay tax.
> your country's persecution of homosexuals and aboriginals
I dunno, we've only had one major race riot this century(six total on Wikipedia)[1], whereas the Wikipedia article for 'Mass racial violence in the United States' has eight in the same time period, and quite a few occurrences of 'This list is incomplete; you can help by expanding it.'[2]
In terms of government action, we had a government apology(from the PM too, not just a motion passed) to the aboriginals before you had one to slaves(again, it wasn't done by a president). We haven't needed to apologise to slaves since they were either repatriated or properly integrated into society(again, one race riot this century).
In terms of homosexuality, Australia has possibly 88 murders of this nature[3], and no Wikipedia article dedicated to it[4], with approximately 150 instances since 1969(including a few mass shootings, which are a uniquely American problem). There has been some recent anti-gay propaganda, but that's due to a public vote on gay marriage, which is the sort of thing that would inflame divisions. Somehow, the argument has been on the suitability of homosexuals to raise children, and the risk of religious freedoms being restricted by poorly written legislation. We haven't had any signs saying "god hates fags" though.
Population Density of Australia: 2 people per square mile
Population Density of USA: 84 people per square mile, with much higher density in some areas.
Your statistics are a little like saying "There sure are a lot more murders in the big city than in my small town!!!" If you aren't making any attempt to look at comparable data like per capita incidents, it is a classic case of how to lie with statistics (an excellent book, btw).
That's true for the massive difference I was trying to show. Let's try to fix the stats, this shows somewhat smaller differences.
The US has 192 rural inhabitants per thousand, as opposed to 176 for Australia.[1] Australia seems significantly more urbanised if anything. According to your logic, we should expect to see more hate crimes. That's not what happens though.
Wikipedia's list of ethnic riots has 134 entries for the US(since 1857, as that's the first Australian entry(there's more US entries in the dedicated article)), and 8 for Australia. That's 0.41 per million in the US, against 0.33 per million in Australia. The modern population should be fine as an approximation.
I'm going to insert mass shootings, because it's always fun to point this out. Wikipedia has 181 shootings worthy of articles[3], or 0.56 per million. Australia has 13[4], or 0.54 per million. As you've pointed out, Australia has a lower population, so this probably means that smaller shootings are worthy of articles. Removing shootings with less than 5 victims(which wouldn't have an article if they were American) gives us 7, or 0.30 per million.
Going back to homosexuals, the US has 148 items in Wikipedia's "History of violence against LGBT people in the United States"[5], or 0.47 per million. Australia has 13 entries(and no dedicated page)[6], or 0.54 per million. I'd almost surrender that point, if Australia didn't have 100% less cults walking around shouting that god hates fags, and 100%(or 6) less mass shootings of homosexuals.
Admittedly, I truncated all my numbers because I'm lazy. Sorry.
According to your logic, we should expect to see more hate crimes.
This amounts to putting words in my mouth. The only point I was making is that the stats you were citing were somewhat disingenuous in their framing. Your framing still comes across as poison pen material.
I'm not arguing that the US has it all figured out. I have plenty of criticisms of my own country. But this kind of venom essentially makes your words hypocritical. It amounts to decrying the hatred here while being hateful.
All of the drugs? Drug discovery isn't solely owned by a single country, I would think. There is truth in the GP's comment. The fact that the country in which the GP resides has its own troubles should not preclude them from talking about that of yours.
What’s the average life expectancy of an aboriginal Australian? How’s Tony Abbot doing, and how’s the weather in a detention camp in Papua New Guinea this time of year?
Go talk to an organic chemistry PhD student and ask them how likely this is to work. The answer is "not likely". Organic synthesis is difficult even for a trained expert. Hell, even the pharmaceutical manufacturers screw it up sometimes.
And that's not even thinking about the possibility of unintended side reactions that create toxic products. Do a google search for "MPTP" if you want to read about amateur synthesis. A ton of people ended up with Parkinson's disease due to a bad synthesis.
Gotta bodge together, rent, borrow, steal or buy an old mass-spec that works, otherwise taking untested kitchen drugs shares a lot of risks in common with taking street drugs.
Try it. :D Just better calibrate it often with whatever stable molecules are used for that and borrowing a known-good, real machine. Maybe record the uncorrected reading to get the drift (both kinds ;) at each calibration so you know if it's wearing out, eg, needs to be calibrated more often or replaced if it's a PITA.
I think home made reactors is a terrible idea. As a few comments have already pointed out, many things could go wrong in a synthesis—the fact that are trusting users to make a reactor to begin with is already an awful idea.
In addition, chemists are not just trained to “make stuff”—the average person isn’t trained to handle toxic chemicals. Even if a person is aware of how to handle chemicals properly, accidents really do happen.
A good example is that bromoethane is listed as a starting material for Daraprim on this website—Google for the MSDS for this chemical and you will know what I mean.
Then there are the clean up and analyses after you have made something. No, it’s not as simple as checking melting points.
I appreciate that people try to take it into the hands to fight what I personally consider to be unfair, but I think this is not how it’s done and it’s a terrible idea.
from what I gather this information is for people who can rationally establish their own risk/rewards envelope, invoking an ethical argument. the target audience would be the person disciplined in concepts (from the top of my head) Informed consent, Precautionary Principle, the Hippocratic Oath, the scientific method, and very good at challenging cognitive fallacies, fact based scientific evidence, etc. An argument could be made that if an individual, for whatever circumstances beyond their control, is unable to get the medicine they need, and if they are capable of understanding some key concepts, they should have the right to do this (if they have the means to do it).
There's an NMR spectrum at about 12:08 in the last video in the playlist, which shows that he doesn't quite have medical-grade Daraprim, and that he'd need a lot of purification to get there.
I boggle that a) this site exists and b) it is getting any traction on HN. Because this is guilty of all the things I have been accused of in terms of being irresponsible and dangerous and possibly profit motivated.
How do sites like this seemingly thrive (Goop!) when doing something really conservative like talking about food chemistry and germ control is such insane drama? I just don't get it.
(I have a form of cystic fibrosis and have spent a lot of years getting stronger and healthier using primarily dietary and lifestyle changes. I used to be really open about that, which was nothing but an ugly shit show every step of the way.
I am probably making a huge mistake to comment on that. There seems to be zero path forward for me. I genuinely don't understand it.)
Maybe I'm reading too much into it, but I'd like to suggest that possibly something is seriously wrong in our society if we need to revert to home made drugs instead of what pretty much the rest of the civilized world does: providing them to their citizens by means of a single payer, universal health care system.
Pretty much every pharmaceutical manufacturer has a free product program for patients who can't afford (or their insurance company won't pay for) the drug.
I'd rather go that route than start a lab in my garage.
Certainly 10 specific cases would be an easy find right? Seriously go look. You can't find them. Studies like this claim cases like "well if we found this cancer earlier" but I'm looking for "he couldn't afford this drug so he died". Should be millions of them according to the rhetoric.
> Studies like this claim cases like "well if we found this cancer earlier" but I'm looking for "he couldn't afford this drug so he died".
Why do you think that first group doesn't matter?
You're hunting for cases where a person with an acute condition fell down and died on the spot because money-grubbing doctors callously refused to give them medicine. That doesn't usually happen in the US, because hospitals are required to administer emergency care without advance payment. That doesn't help the tens of thousands of people who have to choose between getting a checkup and paying the rent, or the checkup doc refers them to a specialist that costs $10,000, or they feel shitty after an accident but they know the bill for the emergency room visit will bankrupt them; so they gamble that it'll get better on its own, and by the time it's clear that it won't, it's too late for emergency care to save them.
So according to your response they don't die from a doctor refusing to provide care as much as they die from fear of bankruptcy? Aren't they poor? So isn't it safe to assume they don't have tons of assets to lose when bankruptcy actually happens? (Also it doesn't even really work that way https://www.bloomberg.com/view/articles/2017-01-17/the-myth-...)
Once again, emergency services are required to see you without payment in advance. Treating an ongoing condition requires multiple visits to a doctor who is not going to see you if you don't pay. By the time a chronic condition gets bad enough to qualify as an emergency, it's often too late to treat.
...Did you read that article you linked to? It outright says "I do think medical bills contribute to or cause a significant number of bankruptcies."
But I'm talking about deaths, I have yet to see even one case yet this is supposedly an epidemic. Sorry if I'm not convinced by statistical handwaving.
Michael Laufer (One of the guys behind this project) gave a talk at HOPE 2016 about making and torrenting Daraprim. It is as an excellent talk and worth checking out. https://youtu.be/NjQ7yLmeqUw
Aside from being a bad idea there is no actual content describing how to synthesize anything. Any chemists about? Is it even plausible for the medications he's talking about, like Hep C treatments?
