So, it’s like if you lose the ability to walk, a wheelchair is the treatment, while spinal reconstruction would be the cure?
That just shows we’re nowhere near the technological advancement needed to develop actual cures—we’re still at the wheelchair stage for most illnesses.
Most of the answers to why a specific drug works are “we dunno but we tried it, compared it to people who didn’t get the drug and these guys got better”. Medicine is crawling right now and I would love to see it run.
Even going so far to use male mice for experimenting exclusively due to fluctuations of female hormones during cycle (which fuck up statistics)… In some cases leading to less effective medication for women than men.
Guesswork at best…
You get what you pay for, in a sense. How would the public respond to a one-time cure being sold for more than the total lifetime cost of treatment? Not well, but the thing is that responding like that is effectively expressing a preference for the lifelong treatment.
Are you trying to be Devil’s Advocate for an imaginary scenario? WTF
Why not?
It’s not an imaginary scenario. For example, look at Sovaldi, the $84,000 hepatitis C cure. That’s less than the total cost of long-term treatment but it didn’t exactly make Gilead popular.
But does it ACTUALLY cost that much or do they charge that much because they can, like insulin?
It costs enough that it was featured at DEFCON this past year.
Four Thieves Vinegar Collective did a presentation where they made their own hep-c medication for a few hundred bucks + equipment.
Here is their website for those interested Link. But be warned, these guys very much have crossed a line in regards to IP law and general medical saftey practices. Governments do not care if your trying to make insulin or meth, they just see a mad scientist making drugs, and these nerds intend to make it a fight.
four thieves do not include any quality control, and plugging a jar to arduino does not grant you expertise needed. they rely heavily on intermediates access to which can be restricted pretty badly, and pricing of these is plain wrong because their scraper mixes up weights of amounts sold. frankly i doubt they made it at all, and any of these syntheses has great potential of killing people who try to do it. take from a dude who sits in medicinal chemistry for 30+ years now https://www.science.org/content/blog-post/anarchist-drugs-again
if you can get their procedures, i’d like to review them because the way they make these, i guarantee there will be incredible footguns included
100% but they are trying, they are mad scientists and see the same problems we all do but unlike the Adjuster they seek a different soultion to the failures of the system. These guys got prime stage space at DEFCON this past year, they are clearly having some success.
The other part is that in this regard, Im just a layperson on this subject and have enough expertise to probably recreate the set up (the printed parts and arduinos), but not to do the chemistry (Nor do I have a need to, I just read articles on their presentation and want to discuss them). You are also not the first chemistry wizard who ive seen or directly talk to about these guys that expressed that exact sentiment of how crazy/stupid this is.
The point is that people are desprate enough when dealing with the medical world in the US that there is a group trying to reverse engineer important drugs, or wacking insurance CEOs. So far these are the only two things that ive seen that are moving the needle and not in a good way.
they made juicero for backyard chemistry. for what this thing can do, all you need is thermometer, hotplate with magnetic stirrer + some standard glassware. this already avoids problems with damage to and leaching from plastics by corrosive solvents, allows for normal air-free techniques to be used (needs inert gas) and is several times cheaper. there are some weird design choices (if you are already using syringes, why not use syringe pump?? why use heat exchanger instead of putting heating element in water bath? etc etc) i’m yet to see procedures in human-readable form. there’s little emphasis on purification nevermind analytics. i guess they made daraprim only because nurdrage did multipart instructional video on it
sovaldi is priced like this because they can, once it goes off patent price will drop significantly, drop one zero at least. japanese price is 300$ because govt negotiated it and covers most of it (99%). price for egyptian govt is 900$
the other big thing is that for most with chronic illnesses, the public isn’t looking, nor do they care, if i had the money, i would try anything, but i hardly leave my house and i can’t afford to work, so i’ll take whatever my insurance covers even if that ininofitself decreases my lifespan and causes me pain, hey actually, you just reminded me of a cure that “the public” doesn’t talk much about, when will euthanasia be legal? oh but that also is an abrupt end to a condition that could still be squeezed for profit, do you know your audience?
when will euthanasia be legal?
It may not be legal, but when self-administered it’s not like you can be punished for it.
bold of you to assume that i have the means to self-administer, if one doesn’t have the means are they just not worthy of peace? or do they have to risk someone going to jail for murder for assisting?
That’s fair.
Idiotic conspiracy theories are idiotic
Idiotic coincidence theories are idiotic
That is not how modern capitalism works. Modern capitalism works in 5 years. CEO have figured out that they don’t need to work for the shareholders but make it seem like they do. CEO wants to get their bonus and they get their bonus if the shareholders are happy and usually the shareholders have short term interests too. So for a CEO, it is more profitable to take actions that generate more profit in short terms.
Which is why there are mass hiring and firings. Those things are a huge waste of resources but it look good on you if you can sell it right to the shareholders. You are willing and able to react quickly.
So a cure for cancer would be sold as soon as possible because whoever has the patent, would make billions (short term). Remember biotech and their COVID vaccine?
The problem becomes finding a cure and a CEO doesn’t have any interest to heavily invest in finding a cure if the cure is not “around” the corner anyway, as that wouldn’t be very short term minded of them. But as this problem exists for any illness, the ones most likely to be treatable through publicly funded Research will get the funding to make the medicine and put a patent on it.
Edit: they don’t kill you for profit. They don’t heal you for profit. For their profit, they act. You just happen to be acted on.
It’s an entirely efficient way to allocate resources if the goal is “shareholder enrichment”.
Capitalism or not the claim would be true, chronic diseases are defined by their lack of effective cure.
Completely true. But there would be fewer of them.
It’s crazy that when my research team comes up with a therapeutic target we believe might lead to curing a disease, we get crickets from drug companies. But when we present therapeutic targets for long term treatment, we get lots of interest.
Could that be (at least partially) explained by those companies looking at a long-term treatment as the more realistic goal after being burned by proposed cures in the past? Lots of quacks out there offer a quick cure, not as many say up front that their product will need a prolonged period of use. Not saying you and yours fit that label but their bullshit tips the signal-to-noise ratio in an unfavorable direction for both relief-seekers and providers.
I don’t know your field, team’s reputation or the companies you’ve been in contact with though so of course it could be the simple greed motivation too.
That’s the lenient interpretation I’d hope.
But we’re not an alternative medicine group or anything. If you look into their shareholder meetings the public info seems to be that they judge whether investments are worth it by potential return on investment, and well a lifelong treatment is always going to be more profitable for them than a cure.
To be fair, and it’s still bullshit, we also look at number of patients per week per cost. Crispr for example, could be used for a huge variety of issues, but curing 100 people globally for $100M in clinical development is just not going to work.
Crispr is the exception:
- it’s massively expensive
- it can cure multiple illnesses and perform loads of other functions
Most proposals for cures are a fairly simple (and cheap) therapeutic target that will only work for one condition or even just a subset of cases within that condition.
“In the case of infectious diseases such as hepatitis C, curing existing patients also decreases the number of carriers able to transmit the virus to new patients,” the memo argued.
Jesus. Fucking. Christ. They’re not just arguing against curing chronic illnesses, they’re arguing against curing infectious chronic illnesses because it creates less patients to extort in the long run. That is one of the most heinous things I’ve seen put to paper.
Now let me preface this by saying “I hate Trump”
One of the few things that I have hope for with the proposed cuts to the FDA is that is wont cost as much money to research possible treatments/drugs/cures so the lower profitability drugs and treatments might actually get a look in. Not saying the drugs companies arent predatory AF but spending hundreds of millions to make tens of millions is just bad business.
There’s a lot of work/investment into curative cell and gene therapies that are very promising! Some have already received FDA approval with high success rates of curing some childhood cancers and sickle cell disease
Of the 10k or so identified chronic diseases, about 95% of them are genetic
Given that we, as humanity, have just barely started ( in research time. From 1987 to 2024, that’s almost 40 years of research, and development, basically nothing on one of, if not the toughest field in the world, and we are still doing breakthroughs on it)
In fact this research has been the cause of improving the quality of life for people with these diseases as care for the patients during test reveals more data.
Also remember, low understanding of the technology, particularly AI which is extremely helpful in these types of researches and past eugenics fears have marred the general zeitgeist for years, which may also cause early adoption to be difficult.
I mean come on, people are still scared about genetically modified food.
And also, another one thing to remember is that a lot, like 80% of these diseases, have an inherent risk for the life of the patient, which slows the research as this limits the amount of data you can get.
So, we are not yet at the point of cracking the genetic makeup of a disease, chugging it into a bioreactor, and whipping billions of potential enhanced cures adapted for the specific body chemical makeup, but we are getting there.
So yeah there is no conspiracy.
Billions of dollars have been spent only on cancer research, imagine for the rest of diseases. If a government had cancer cure done for X type of cancer, they’d deploy that shit like Doritos locos at the mall and ensure themselves indefinite reelections forever.
It’s just really, really, RIDICULOUSLY difficult.
But, we are humans, difficult for us, is an old friend
This.
Yes, yes, there are conspiracies here and there, but these days we can’t have any reason anymore, everything must have an evil genius behind it.
This is just another case of “it’s not that easy”
I’ve grown up fascinated with several diseases and was eager to study them and find treatments that would better and prolong the life of the patients. By the time I was done with university my disease pet peeves were already very well managed. Take cystic fibrosis, a disease that was still considered a childhood disease when I was born in the 90s. With trikafta and other treatments CF patients now climb mount everest and whatnot. They have kids, back in school I learned that the few cases who made it to adulthood were infertile because of their viscous mucus. Like, I would love to work on an mRNA based gene therapy for it, but it seems almost unnecessary, given how manageable the disease has become.
I also agree and want to stress what you are saying about the acceptance of gene therapy/ GMOs in general. I am in Germany and people here are insanely against GMOs of any kind. Manipulating the human genome is so far off the rails for the vast majority, I mean there is still so much hate against GMOs in food, we are nowhere near trying to use gene therapy on a broad scale. Let alone that to actually cure a genetic disease, you would have to undergo the gene therapy while you’re still a zygote. This is simply illegal here. Our research opportunities are severely limited on genetic manipulation.
Or they’re illnesses and conditions primarily affecting women.
Chronic fatigue has only since covid (when men started reporting constant excessive tiredness) been started to be treated like a real thing by doctors. And it’s still barely considered by most doctors.
Endometriosis is another ‘chronic’ womens condition that has only very recently started being researched properly and taken seriously. And again, it’s still incredibly hard to get taken seriously and helped if you suffer from it.
See also the massive discrepancy between autism and adhd diagnosis in men and women, and with bpd diagnosis between women and men.
On a somewhat less severe side of things, lack of libido in women is still considered a jokey non-issue by most doctors but viagra has been on the market for decades for men.
There’s a lot more but I’m too tired to keep writing this.
On a somewhat less severe side of things, lack of libido in women is still considered a jokey non-issue by most doctors but viagra has been on the market for decades for men.
Viagra doesn’t treat a lack of libido, it treats a lack of blood flow to the relevant anatomy. And it was discovered by accident - a drug meant to treat high blood pressure and angina that was more effective at doing something else to blood flow. In other words it’s not that men use viagra to have the desire, but rather to get the equipment to play along. Lack of libido in men is often a symptom of low testosterone, so they check for that and prescribe testosterone if that’s the issue but that’s really the entire toolbox on that front.
Lack of libido in women is a much harder problem to solve, and the first attempt at it that ever made it to market barely worked, had to be taken daily, and went horribly wrong if you consume any alcohol at all. There’s a second that hit market a few years later that’s supposedly more effective and isn’t a daily regimen but is also an injection, has significant potential side effects and can’t be mixed with naltrexone (a drug used to treat opioid addiction) because it will cause naltrexone not to work.
Compare to contraception, where there are tons of options available to women and basically all insurance is legally required to cover at least one brand of each type, including barrier methods, with a prescription. The options available to men are condoms or being surgically sterilized, and there’s no requirement to cover either at all.
It’s harder to get contraceptives for men approved because it doesn’t prevent a medical condition for the user and so the bar for what is acceptable as a side effect is really low. You may have seen news stories about a male pill and men chickening out over the side effects (what wimps!) but the problem wasn’t men backing out of the study, but that the acceptable side effects for a treatment that prevents a different person from developing a condition are so restrictive that they killed the study because it was already never going to be approved.
There is another male contraceptive that’s been in development in India since the 80s, and as of 2022 has still not been approved - RISUG. Phase 3 clinical trials for RISUG were published more than twenty years ago. There’s a variation of RISUG that’s in development in the US called Vasalgel, and it’s been in development here for over a decade. RISUG and Vasalgel are long term reversible contraceptives - think like an IUD - that consist of an injection in each of the vas deferens and lasts up to a decade, but can be removed earlier if needed by another set of injections in the vas deferens. Should it get approved in the US, there’s no legal requirement that any insurance cover it, let alone without copay because the ACA specifically only requires coverage for contraceptive options for women.
Thank you for bringing some reality to the table.
This is such a lie. This only works if you assume no other people will ever develop one of those illnesses. Even if all acquired illnesses are ever eradicated, big pharma companies will still make bank off hygiene products, makeup, and Aspirin. Pharma companies don’t just sell treatments and cures. Duh.
There is a film from 1995 which is literally about companies trying to prevent a cure from getting out since it would interfere with their ongoing treatments.
Tap for spoiler (the name of the film)
The film was Johnny Mnemonic .
Because chronic diseases are difficult to cure? A solid portion, like diabetes, or cancer, are a whole host of different causes in a costume.
Anything that can be easily cured/trivially managed, or outright prevented isn’t considered a chronic disease any more. Beri-beri and Scurvy are non-issues today. Diabetes and AIDS aren’t the death sentences they used to be.
Medical research being deliberately gatekept because a cure would be unprofitable is conspiratorial thinking, and isn’t really reflective of reality.
A single dose cure for a chronic illness would be huge, and a lot of places would throw money at one if it existed, even if the cost was several orders of magnitude higher. No insurance, public health scheme, nor medical clinic would want a patient to take a constant course of medication, when they could have one, and be done. It’d be better for them, and patient quality of life. Even for the medication companies, they get to be in history books, and can get instant income, where a long term scheme might have patients dropping off for one reason or another.
And if someone cures it first that’s it, they win the whole pot until generics are approved.
Thank you. You expressed everything I wanted to say.
Gatekeeping cures to illness just isn’t true.
I guess the sad thing is, that given the way things are, i cant blame people for thinking this way. Because be honest. Would you put it past them to not do it?
I can 100% see healthcare and pharmaceutical companies doing this for profits.
lots of chronic diseases we have today are either degenerative or genetic, so it requires new fancy tools like gene therapy to rework lots of cellular biology at very low level. small molecule drugs can manage these to some degree, but these were a thing for like 50, 70 years now so that’s why these are a thing
How’s this a meme?
It’ a meme in the same way that anti-vax is a meme.
To your downvoter: https://en.wikipedia.org/wiki/Meme
A place to share screenshots of Microblog posts, whether from Mastodon, tumblr, Twitter X, KBin, Threads or elsewhere.
It’s just a catchier name than microblog posts.
Tiring ass conspiracy theorists.
are they wrong though?
if you’re a person who mostly cares about profits which one do you accept
research 1: we’re on our way to cure [rare illness]! we just need funding to find and develop the proper formula, we need x million for the budget, and the drug itself is not likely to be expensive and will be one time use/short therapy
research 2: we’re going to tackle [not really common but not quite rare illness], we need x million for the budget, we probably won’t cure it but a weekly dose of the drug will help those affected
now think like the only thing that matters is your profits, research 1 will cure people, and sure you could make the cheap drug cost $100000 but the researches could turn against you and release their research to the public losing you profit. and even if they don’t you’ll need to balance the price to turn in some profit in as short amount of time as possible. if the illness is rare that means there isn’t many people who are affected, and those people are not likely to be rich - why bother
research 2 on the other hand is an easy investment, people will need that drug forever so you can set the price low enough for most to be able to barely afford and get your sweet sweet money back with profits fast
remember you don’t become a billionaire being charitable, you become a billionaire by cutting corners and milking as much money out of those below you as possible
are they wrong though?
Yes.
This ignores the very nature of pharmaceutical research and development.
Pharmaceutical companies aren’t really research institutes, because research and development is terribly expensive. The primary research of just about any major drug innovation is typically first pioneered by Universities who are publicly funded.
A Pharmaceutical company’s version of research and development is taking the primary research done by universities and developing them into a drug that is patent protected.
There is a ton of rat fucking in pharmaceutical companies that lead people to this type of conspiratorial thought, but most of it is pertaining to patent law, not dictating what a bunch of grad students are doing their research over.
Most chronic illnesses are the result of accumulated damage and dysfunction that are diffuse throughout the body. Something like MS has done damage to millions of nerves by the time it gets diagnosed, and the body is not particularly good at healing nerve damage to begin with.
Chronic illnesses almost always require chronic treatment because of the nature and extent of the damage.
ah it seems i’ve misread the initial post and replied to this under the assumption it said “rare illnesses have no cures”
Quite the contrary, there are some rare illnesses that are unique in that they do have actual cures now. For example, the Sickle Cell gene therapy is the first gene-editing treatment to be approved for human use and completely cures the individual patient of Sickle Cell disease.
TLDR yes, they are wrong.
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Prisoner’s dilemma. As a pharmaceutical company, you know theoretically a cure for a given chronic illness exists. What you don’t know is if your competitor is close to having one. If they are, it would render your pathetic non-curative regimes obsolete and you’d lose billions and be decades behind. Shareholders would be calling for blood, and if you’re the CEO or board exec you’d lose your head. So you work on developing the drug because even if its possibly less profitable, its still in your best interest to do the research.
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Most people doing this kind of research are universities, which are publicly funded and would gain more profit from a curative drug than they would from letting big pharma continue using non-curative regimens.
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Government has strong interest in developing cures because chronic illness is a massive drain on the economy costing billions of dollars, with significant public health costs that eat into government budgets that politicians would much rather spend on things like weapons or parking meters that accept credit cards.
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