> Only 1,000 to 2,000 people in the United States are thought to have deteriorating vision caused by this errant gene
This drug will only work on, let's say 1500 people. Of those, let's optimistically say that 1/3 have insurance that will cover expensive treatment. So 500 patients can be expected to be treated by this drug per generation.
So this drug will optimistically get a revenue of $500 million per 2 decades or so, or $25 million per year.
The number generally thrown around for getting a new drug researched and onto the market is $200 million. So it will take 8 years just to break even (although likely front-loaded once it becomes known that this drug exists), and total revenue for this drug for the forseeable future is about 500 million.
Like everything I guess it depends on your political views. Personally I think it's fine if medical care and research is a massive black hole of funds that the tax payer foots the bill for...
So we should create a black hole of funds for a few people ?
I don't see where the gain for society is there. Not everyone can be saved/helped, and medicines/drugs are probably too greatly overestimated now in my opinion.
Also it's sad but some organisms are just not fit for some tasks (or sometimes even for life), and I don't think throwing money without any supervision or afterthought about it is a very wise answer as a society. Like, maybe we can just have blind people.
We need to stop expecting healthcare to work as a fully independent, self-funding unit in a society. It doesn't, and cannot, work that way. Healthcare, like basic research, is a cost centre in a country, not a profit centre, by the very virtue of what it deals with. It's a place to which you allocate surplus created elsewhere in the economy.
That was my point, and you worded it in a clear way.
I don’t know what the solution to medical funding should be. It’s clear to me that the current situation (medicine for profit) does not work. It’s also clear that the current economic system is prone to waste and inefficiencies.
For all I know, maybe people should be able to get a grant for certain situations. The normal economic forces would then work to incentivize the grant holders to exchange grant funds for goods/services. The funds would still funnel the way they currently do, but grant holders would have gained some measurable benefit along the way. Presumably the grant holders would have made their choices based on perceived needs. (Ie if they have 2 chronic illnesses but only one is life threatening then the life threatening illness will be allocated most resources.) this is just a thought experiment.
Edit- another idea: change the funding for the DHSS to include funding for basic medical research and treatment with a set % of the GDP. I’m thinking that ratio should be based on disease rates.
You need to take into account how much it costs to you save a life through other means. If the marginal cost of saving a life with healthcare improvements were 100 million, it would be much better to put that money into other things.
The “formula” could be as simple as 10x annual salary for life threatening illness. That wouldn’t rupture the treasury and still provide means for people.
The budget is, though. And healthcare is not the only thing that saves lives.
If you care about saving lives, you want to allocate budget in the most cost-effective way, which means putting money where a marginal life saved costs the least.
I agree, but it really is a bottomless pit though, so I don't get how above poster think it's very wise to approach its cost and subventions by going without limits, because "bah, taxpayer will pay".
And by making it a decision by some body you make sure that it will be corrupted. By just limiting the money and leaving it to the private sector you make sure it's an actual economic decision.
So do you want the extreme rare condition that some important congresscritter's daughter has consume 80% of the medical budget ? This is the way to go.
The private sector is absolutely magical at corrupting economic decisions and sucking out all the money that passes through it, so it's not that easy either.
> So do you want the extreme rare condition that some important congresscritter's daughter has consume 80% of the medical budget ? This is the way to go.
People would scream bloody murder if that happened.
I wonder if you'd think the same if it was your kid (or you yourself) in that position. It's easy to take the pragmatic asshole position when it's not your skin in the game. It boggles the mind that people think like this in this day and age.
This is really just a corollary of the fact that it's easy to spend other people's money. Which itself is a corollary that people are selfish. No admonishment, it's just part of being human. A survey of people who stand to benefit from society paying for an expensive treatment isn't exactly the most objective.
It's been published a few times over the past few days that healthcare professionnals often have lower expectancies towards medicine especially during end of life etc. So I guess I would actually think the same indeed.
There is a difference between current days 70yo oncologist with cancer, and a 30yo proud parent.
As futile as it would be, before I had a child, I thought that in the event of a end-of-humanity catastrophe, I would get as close to the source as possible and admire the end. Now with a kid, I am going to hold the fort has long as possible, cook my own hand and serve it, just it case this isn't the end.
Nope, such testimonies even exist in 30 yo. It's not a matter of having children (and I firmly believe you can have children without becoming unreasonable on the way, even if having children often denotes of complete disregard for the world's state over one's egoistic interests but that's another problem), just having seen enough biology at work...
Except that 1st. Sparks' stuff only cost a fraction of that to develop (closer to the $200M), and 2nd lot of the early expenses were fronted with tax payer's money.
And it my understanding that, soon gene therapy will be selecting which bits to flip and flipping them. It still needs testing, feedback, etc, but it isn't the same as going through a full development cycle. Am I wrong?
> I can’t imagine how psychologically damaging that would be.
Probably very little, especially with reasonable hope that the treatment will become affordable over the next years. Also, it changes the situation from an impossible one to merely a practical problem of convincing other people to fund your treatment.
Regardless, curing some people and giving hope to others is strictly better than not curing anyone at all.
Likewise if the company gave the therapy for free to everyone who couldn't afford to pay $850k, they would be in the same position as they were before.
Before the reaearch endeavor, the company had x more dollars in cash. They bore the cost with the expectation that it would generate cash flows in the future (to hopefully more than offset the cost). The dollar cost was likely quite large. So the company certainly would not be in the same position had they not decided to develop the drug. There was no cost the affected genetically blind, however. They only now have the option of potentially being able to get a new treatment.
When does the gene kick in? Most government funded healthcare would probably see this as worthwhile if it affects people young enough, it's cheaper for the country to pay for the treatment and have a productive citizen than it is to have them on welfare for their entire life. If no one is going blind until late in life then the equation changes though.
This is an interesting line of thought. Blind people are not disabled though, they can have careers. It’s a false assumption that blind = lifetime welfare. I’ve worked with awesome programmers who were completely blind from birth. And quite a few who were legally blind.
The comparison could be what the reduction in lifetime earnings due to being blind vs the $850k.
But I think that having a utilitarian view toward delivering healthcare is frequently unethical once you start rationing care (eg, I’m 75 and not working at all, living off social security, $300k heart surgery is detrimental to society’s bottom line since if I die I stop collecting social security, etc etc)
>But I think that having a utilitarian view toward delivering healthcare is frequently unethical once you start rationing care (eg, I’m 75 and not working at all, living off social security, $300k heart surgery is detrimental to society’s bottom line since if I die I stop collecting social security, etc etc)
This is what so many people fear about the possibility of single payer in the US. Eventually, people will start to be pressured to see their duty to die for the benefit of society.
And because other nations have socialized health care and don't have "death panels." And I'm not aware of any plan that would preclude a person from purchasing their own insurance to cover any care deemed of insufficient value by the national system.
Every system does. They're not called "death panels" but that's the function.
There's a reason why a 97 year old with terminal cancer isn't going to receive a liver transplant ahead of a 12 year old with no other health issues.
Under the ACA, we have the "Independent Payment Advisory Board". They decide which treatments will and won't be covered.
Private insurance has the equivalent. Most insurance companies don't cover "Experimental" treatments.
I'm unfamiliar with the details of the systems in Europe but they all have to have a body with a similar function. No system could survive with a policy of paying all of the money you want for every treatment you can find.
The Netherlands has such a system. There is generous cover for every way you might end your life and for every other treatment there is a general rule that they'll pay $X for every year of expected "quality life" that you'll get out of the treatment.
This means that dialysis (very very basic treatment, but if you need it, you'll die without) ends somewhere in your 70s. For instance if you have a compromised liver. When they stop it, you will die in a matter of months at best, in some cases painfully.
What I don't get is why there isn't more noise about this in the Netherlands. After all, this system is so generic that you can of course make the argument that something like 30% or so of people will be confronted with a "no" that will end their life.
Every system does. They're not called "death panels" but that's the function.
True. As noted, in our current system, it's just the insurance companies making the call instead of a bureaucrat. And it's usually done at a general level, not individually (except for rare, expensive, edge cases).
But, politicians in the US who oppose change would have us believe death panels are going to single out Grandma as not worthy of care.
>True. As noted, in our current system, it's just the insurance companies making the call instead of a bureaucrat. And it's usually done at a general level, not individually (except for rare, expensive, edge cases).
If a private entity sets their criteria for treatment in a way that people don't like, it's possible to switch to a different insurer.
And these nations even have strong debates about even allowing people the right to choose when to die. Morality is a big part of adopting universal healthcare.
Also, I don't see how the current private and public insurance systems in the US would prevent insurers or government to decide, in the future, that certain groups of people do not deserve treatments or covereage anymore.
While not ideal, the drug/delivery procedure will be reverse engineered in a matter of months, and these 1000 people could get on a plane and get almost the same procedure in India/China for $8,500 instead.
For a drug like this that uses a completely novel technique, gene therapy, I'd say that the R&D investment can also help in the discovery of other drugs. So you'd have to adjust the figures a bit.
As is reported down thread it might be reasonable or not but some of the assumptions are open to question. It's not unreasonable to suspect that Medicaid will cover the benefit. Also The number of people would just include the U.S. presumably the drug would be sold world wide.
But the rest of the world doesn't recognize FDA approval (and the FDA doesn't recognize any other country's approval process). So the cost of certification has to be paid again for every country its sold in.
Look, if you want to be snide then it's just as easy to say that Medicaid won't be around because expanding it to non-poor people will cause it to go broke. Either that or the desire to cut health care costs from both sides of the spectrum will cause the program to go broke.
Your whole reasoning is based on marble counting.
A better question is were the people capable of doing the research working on the right problem, or should their talents have been applied to different problems?
Once there is a 'cure', of course it should be handed out to everyone that can benefit from it.
So Luxturna is a DNA sequence embedded in the AAV2 virus (https://en.wikipedia.org/wiki/Voretigene_neparvovec). It seems like they modified the Kozac (header, basically) of the DNA slightly (see Wikipedia). But essentially what they're doing is injecting the 'correct' DNA sequence into people with a biallelic (both copies) mutation on the RPE65 gene. The AAV2 virus is there as a delivery mechanism to get the DNA into the cells more efficiently. The injected DNA then hangs around (loose, I think) in the cell and will get read and the correct proteins get manufactured even though the patients main copies of the gene are faulty.
The virus bit might be hard to do, and maybe editing the header of it. I'm not sure. I guess that probably is quite hard.
But manufacturing DNA and injecting it is fairly trivial, as in this guy with a PhD and a small lab was able to do it for about $400. There are biotech companies who will just make the DNA for you. https://www.theguardian.com/science/2017/dec/24/josiah-zayne... ... this was using CRISPR which is like a DNA find/replace, so in some ways more sophisticated than the way Luxturna works.
I'm not saying anything about the price of this treatment per se, obviously a load of R+D and regulatory ballet had to be done here, but just saying the basic building blocks of some gene therapies are quite a bit cheaper than I imagined.
That guy misunderstands the point of Zayners stunt, and also misunderstands the kits that Zayner sells (they are kits for using crispr on yeast in a Petri dish). Zayner acknowledges that his arm injection stunt is likely very inefficient.
Still I'm not going to defend Zayner, he probably is a bit of a dick.
But the point is that you can modify the DNA of at least a small number of your own cells in a rough untargeted way for about $400. That's quite surprising. Makes you wonder what might be going on behind closed doors elsewhere.
Without getting into details, gene editing has come a long way, and every steps involved are about 20-25% of the cost of what they used to be. Even FDA trials typically require lower enrollment and assays. So gene therapy should not be more expensive, it should be cheaper.
This is why the majority of medical breakthroughs and innovations occur in the US. Sure capitalism has its negatives, but its positive is that it provides vast financial incentives for people to create new solutions while at the same time filling a need for humanity. $850k is a hefty pricetag, but the ability to see your loved ones is priceless. Win/win for everyone involved
It’s a gene therapy delivered in a viral vector. They inject it (into your eye which much be fun). It appears to be one of the first approved gene therapies.
This might be limited by what the sum total real capability is of the entire vision system. An eye that can receive extra wavelengths is useless without the Neurons that can perceive and project into our conscious mind. To imagine injecting viruses that will change the genetics of the brain is a major leap of discomfort.
>An eye that can receive extra wavelengths is useless without the Neurons that can perceive and project into our conscious mind.
Not necessarily. For example, consider that neurons in our auditory cortex aren't different from neurons in our visual cortex!
What is different about them (and the "subsequent" perceptual/conscious level) is that they receive different inputs, and have learned the systematicity of how these inputs behave in relation to the body's own actions.
This is related to the "Sensorimotor Contigency" theory of consciousness [1], which would predict that it should in fact be possible to process entirely different types of sensory input, given long enough exposure and a clear systematicity of the input signal.
“As we walk down the street there’s radiation, X-rays, infrared and ultraviolet, as well as the electromagnetic field of the planet. So we want to create new senses to become aware of our environment.”
and
Harbisson, who is colourblind, has an ‘eyeborg’ that allows him to “hear” the light spectrum (including infrared and ultraviolet), while Ribas has a sensor in her elbow that vibrates when an earthquake occurs anywhere in the world.
Cost-effectiveness guidelines somewhat arbitrarily state that an expense of $50,000 per year of life is reasonable, since this is the estimated average annual cost of dialysis therapy. This gene therapy is sight-saving, but not lifesaving, so cost-effectiveness analysis must consider QALYs -- quality-adjusted life-years. How much is a year of blind life worth relative to a sighted year? There can be no definitive answer to this, but one guesstimate I found was 80%. Using this and the $850,000 total cost, one finds that the treatment would have to provide on average 85 sighted years to be considered cost-effective. Insurance companies could use this kind of analysis to restrict the treatment to infants.
So if you have this, at a cost of $850k, is it then unethical to have children, knowing that there's a high chance that they'll subsequently have to pay $850k in order to be able to see?
I suppose, more generally, even in the absence of an $850k fix, if you have genetic blindness, is it unethical to have children?
This is what I came to believe too, and it's yet another reason why I believe the highest priority for the society is to stabilize what we have now - as opposed to constantly try to tear everything down in order to win something for one's group.
Looking at the last decades, it's no longer unreasonable to think we might cure things like blindness or deafness, or paralysis, in the next 100 years. But that can only happen if our technological civilization survives uninterrupted. If it spirals out of control and self-destructs, we'll be stuck in a pre-industrial age for thousands (if not hundreds of thousands) of years, until the Earth replenishes some of the easily accessible high-density energy sources we pretty much entirely mined out.
I mostly agree with that, with the caveat that it could...
The part where it doesn't: AAVs do not integrate their DNA into the host genome, not by themselves at least. They form latent infections, which will persist until the cell divides or die.
However, the part where they could: AAVs can infect any type of cells, including germline cells. While they persist, if the cell becomes infected with an Adeno or Herpes virus, which can also infect a broad range of cells, then they could integrate into the host genome, including germline cells.
It is their corporate presentation; lots of data on the drug starting around slide 10. these are data from the clinical studies required for FDA approval. Investor presentations (for public companies) tend to have good summaries of the key data on a drug; for more info, you can read scientific publications on the drug in academic journals
Just wondering, why there's no mention of this being free, i.e. 100% government funded. Something like this essentially transforms somebody's life, allowing him/her to work, not being reliant on others etc. Not to mention the (oh, sadly) not quantifiable humanitarian reasons.
Why would making it government funded make new treatments like this 1) available or 2) accessible? Obviously it's extremely expensive to R&D something like this and no one is going to make that investment--least of all a cash-strapped government bureaucracy--unless there's some payoff. And if it were government funded, the cost to taxpayers would be many times the benefit to taxpayers for something like this; there's obviously a point at which even the proudest humanitarian has to look at the big picture. Obviously America wouldn't bankrupt itself to save one life--the price really does have to be looked at.
Besides, there's nothing humanitarian about spending other peoples' money. That requires no humanitarianism, just political access to taxpayer coffers.
The best way for more medical innovation like this is for it to be expensive at first. Over time, competition and demand drives prices down. Pretty much all the medical technology we now take for granted was only accessible to the rich at first.
The best way for more medical innovation like this is for it to be expensive at first
That's a bold assertion, and you haven't supported it with an argument.
What about diseases of poverty in the third world? Is the best way of getting medical innovation here by making the cures expensive? The trouble with this kind of thinking is that it (a) conflates the value of an intervention with the price it can command, which is most problematic when it (b) requires large upfront payments and cannot efficiently aggregate or amortize costs over time.
Here's some food for thought for a different approach: prizes. If there were funds made available to pay a prize for working cures, drugs, etc. for medical problems, it could replace patents as a reward mechanism and permit market behaviour to increase the efficiency via generics and widespread application directly, rather than needing exclusivity and high prices for a long period. See e.g. https://en.wikipedia.org/wiki/Prizes_as_an_alternative_to_pa...
It's not a bold claim, it's quite supported by evidence. AZT, the first commercially available drug to treat AIDS, was made available in 1989 at the extraordinary cost of $18000 per year in today's dollars ($8000 per year at the time). It was reported by the New York Times at the time that such a cost was 'inhumane' much as headlines do today when expensive new treatments come out.[1] Now the same drug is packaged with Lamivudine and costs $6600 per year[2]. There are now generic retrovirals on the market as well. Now, of course the total suite of treatments is higher which means the overall cost for patients can be higher, but over time the cost of these drugs will go down too. The point is that something being expensive at the beginning ensures long-term development and accessibility for the drug, doesn't hinder it. Looking at a less life threatening example, LASIK eye surgery used to cost $12,400 with inflation.[3] Now it can cost as low as $299 per eye.[4] The list of examples is long and exhaustive.
> What about diseases of poverty in the third world?
To be clear, I'm talking about new medical innovation, not the proliferation of existing medical solutions which obviously can be paid for by governments and nonprofits without harming the development of new methods. That said, there are quite a few 'last mile' solutions getting medicine to poor parts of the world that organizations like the Gates Foundation have identified.[5]
> Here's some food for thought for a different approach: prizes
I like the prize method as a way of incentivizing innovation--and it should certainly be tested. But I would be hesitant to endorse it as a replacement for the patent system unless it was proven to work more effectively in creating more cost effective innovations. It could, of course, be tested by allocating a percentage of the NCI's budget for prizes. But I think you'll find that the appetite for that sort of risk is sorely wanting on the governmental level, as it should be. We want investors to be taking these risks with their own money (and get rewarded when they pay off), not gambling with our money and losing it when they don't. Remember that, like startups, only a small fraction of drug ventures make it to the market and we only hear about the ones that do.
> The cost to taxpayers would be many times the benefit to taxpayers for something like this
Really? Do you know how expensive supporting braille is? Accessibility requirements for software? Fitting a blind person's house out with accessible features? Providing public services and transit for the blind? Income support?
All of these things are costs absorbed by society, which you cover one way or another (e.g. taxes, additional costs in products & services etc.).
Being blind is a major disability, the lifetime cost to society of a single blind person is many multiples of 425k per eye.
> The best way for more medical innovation like this is for it to be expensive at first. Over time, competition and demand drives prices down. Pretty much all the medical technology we now take for granted was only accessible to the rich at first.
What?? What if there are no rich blind people competing for this care? How is the cost going to come down then?
Certainly society doesn't absorb these costs evenly, and only a fraction of these costs are paid by taxpayers. I'd bet if you add up the total expenditure on the federal government level for services for the blind, it wouldn't justify trading it for curing people who suffer from this one genetic adaptation (given all the other people who are blind for other reasons).
Plus, it's not as if every person will even get the procedure if it is free. There are complications. There are religious objections. There are personal preferences.
Higher prices don't come down because rich people buy them. They come down because it creates incentives for new innovators to produce cheaper and more efficient methods.
Because it's a slippery slope. You can always argue that a blind person is able to work in some way (callcenter, software dev, etc), and/or you can argue the same for other diseases. Where do you draw the line ?
That argument aside, I am of the opinion that all healthcare should (eventually) be free so that arguments like these become moot.
This opinion comes around often and what bothers me a bit is this "free" in free healthcare. There is no such thing. Eventually the money for the people and things has to come from somewhere.
The conversation is often about how do some EU countries have free healthcare and US doesn't. The answer is higher taxes, longer waiting lists, lower quality, no support for extreme cases and low accountability.
"Free healthcare" countries often cannot afford these modern cutting edge treatments so people often end up leaving for US to pay for the treatment themselves. If US didn't have such a brutal healthcare system then who would do the research since the "free healthcare" countries cannot afford it?
Healthcare is essential. Either you pay for the healthcare through taxes, or society does in some other way. The some other way that the US has implemented is to put layers bureaucracy of insurance and artificial "market choices" on top of the care, which removes all inefficiencies and inflates the cost dramatically.
Of course the alternative is to leave people with health conditions out on the street and just ignore them, which does seem to be a common occurrence in the US
I used to think all healthcare should be free. One observation changed my belief:
“The demand for healthcare is effectively infinite.”
There really is no limit to a person’s healthcare needs. It’s a moving target. The only way to make all healthcare free would be to start by defining exactly what is and isn’t healthcare. That’s exactly what is upsetting about the concept of government provided services. At some point someone will have to say “enough.”
Sure thing, I think the current soft limit is set by your doctor, who will e.g. postpone your non-essential (e.g. cosmetic) treatment. Blindness is just that - blindness. I see no slippery slope here.
Currently experienced three health systems: Polish, US and German; first is woefully underfunded and public, second is ultra-private, third is a properly funded public system.
In Poland, I used both public and private, using private whenever I could (think dentist, blood test etc.); in US I never went to the doctor because I had to pay extra; in Germany I feel comfortable and happy with the fact that I get public healthcare for my taxes. Actually planning a string of visits to the dentist ;)
How does healthcare becoming free (i.e. government funded) make the question of cost and benefit moot? If anything it becomes more of an issue because now such decisions are being made by political appointees and bureaucrats.
In the UK there is an organisation innocently named NICE that makes the cold hard cash decisions on whether the NHS will treat something. They are often mired in controversy.
$850K may seem like an outrageous price, but Steve Miller, CMO of Express Scripts, who has been a vocal critic of drugs prices over the years, called this price "reasonable".
The longest study I've seen suggested at least 10y in long-lived cells. Technically it should last as long as the cell last. In the case of nerve cells, such as retinal cells, this should be as long as you live.
We are going to see more of this sort of thing. The elephant in the health-care costs debate is, ironically, that we are becoming much more capable at it.
The disease effects a small number of people (1 in 4000), and doesn’t cause complete blindness in all those effected.
It’s delivered in a viral vector, kind of not so easy to do yourselves I’d guess. Probably the easiest way would be to get hold of some and culture the virus yourself? Then just make as much as you want.
Still injecting something made without strict QC into your eye might not be so appealing.
These risks make it obvious why an "at home" solution is highly unlikely to come to fruition.
You want to be putting enterprise-grade things into your eye. The only way you'd be able to guarantee that is to source the treatment through traditional channels.
Science and technology make the world a better place - for those who can afford it. The rest can go get stuffed.
I remember an old psychological test where you were presented with a scenario where a member of your family is sick and while there exists a drug that can cure them, you cannot afford it. You're given the option to break into the local pharmacy and steal the drug- and asked whether you would do it. The way you answer the question is an indication of your moral development stage. If I remember correctly, the idea is that the most morally developed individuals will decide that stealing the drug is not moral, that if everyone stole what they needed without regard to the interests of the original proprietor, there would be anarchy and society would collapse. So on the whole, the moral decision is to not steal the drug, even when your relative needs it.
Well, if society allows a life-saving drug (or, indeed, a blindness-curing treatment) to be unaffordable to those who need it, then that's already a society that is not serving its members' interests. What the hell do I care if society can support science advanced enough that it can cure blindness, if it won't cure my blindness? I'm expected to do the moral thing and sit nicely and not rock the boat- but others are not expected to help me, in my need? Bugger that for a game of soldiers!
A society that leaves people blind when it can cure them is just as useless as one that burns. So let it burn.
I'd steal that drug in a heartbeat.
Oh btw- in another article about this miracle cure, I read the ridiculous claim that blindness will cost a person about $1million in their lifetime, so the $850k price tag is justified. I don't see this claim in this article, but it just goes to show what some may consider "fairness": "blindness robbed you of $1million, now we're gonna take another".
> Science and technology make the world a better place - for those who can afford it. The rest can go get stuffed.
It's always like this and it's perfectly natural part of the process. You will not get the benefit of the newest invention today. But you, and many others like you, are interested, and so people will work to bring the costs down, and in 5, 10, 20 years, suddenly you can afford it.
As heartless as it may sound - suck it up, wait for your turn. It will come.
> Well, if society allows a life-saving drug (or, indeed, a blindness-curing treatment) to be unaffordable to those who need it, then that's already a society that is not serving its members' interests. What the hell do I care if society can support science advanced enough that it can cure blindness, if it won't cure my blindness? I'm expected to do the moral thing and sit nicely and not rock the boat- but others are not expected to help me, in my need? Bugger that for a game of soldiers!
It's a fucking fresh discovery. Have a little patience!
Stealing a drug in your example is not a moral thing to do because if everyone did that, there would be no drug, and no pharmacies. Unfortunately, in this world we're constrained by limits of physics and economics (i.e. basically how good individuals are at coordinating to do something together on large scales). Things take time.
Also, frankly, you yourself have contributed exactly nothing to the development of this drug, so I don't see why you should blame society for not having it available to you immediately. Blame God, if you believe in one, for creating a shitty universe in which blindness and death are a thing, and in which we're left alone to solve them to the best of our capacity.
And then be thankful for the good people who will make sure this drug will, eventually, get to you.
You misunderstood my post to mean I'm blind? And you're giving me this little screed to tell me I should wait patiently for 20 years until my turn comes, that I can finally see like others.
Well, I'm not blind but I'm revolted at the idea that a blind person should wait for a quarter of their life to go by, just so somebody can recoup the costs of research that should have been supported by public funds in the first place.
>> Also, frankly, you yourself have contributed exactly nothing to the development of this drug, so I don't see why you should blame society for not having it available to you immediately.
The people who developed that drug were able to do it because they grew up in a society that allowed them to become scientists, by freely sharing the work contributed by others and the knowledge discovered by others (because science). And that, on top of every other benefit of living in a human society and not having to invent and construct every bit of science, technology and infrastructure from the ground up, on their own.
That is the secret sauce of how societies work: solidarity. If you take this away, you take everything else away with it too, including the benefits of having science and technological progress in the first place.
But, you say- all the technology and science will become free in the long run. Just wait. Well, some people are blind now. Why let them wait, when we can cure them already?
And if the blind men can wait patiently for 20 years to see the light, why can't the sellers of the drug wait their turn also? Let's set up a fund to collect $850k for each blind person who is cured, thanks to this new treatment. And let the creators of the drug get that money in twenty years from now. They can wait patiently too, can't they?
> You misunderstood my post to mean I'm blind? And you're giving me this little screed to tell me I should wait patiently for 20 years until my turn comes, that I can finally see like others.
No, that was the "generic you".
> That is the secret sauce of how societies work: solidarity. If you take this away, you take everything else away with it too, including the benefits of having science and technological progress in the first place.
No. That's how families work. Sometimes.
Society at large works on trade. You don't get your shoes from the shoemaker for free, because he knows you need them and feels solidarity with his fellow human being. You trade money for the shoes, so that he can trade this money with a farmer for food, in order to eat. This same thing scales up to every human need, including developing drugs.
Don't get me wrong - I wish societies were built on solidarity. Things would be so much better. But in the real world, they aren't - and this is the world we have to deal with.
(INB4 open source - this is an exception which happens because there's essentially no marginal cost to software beyond time, and barriers of entry are low; pretty much nothing else works like this on larger scales.)
> But, you say- all the technology and science will become free in the long run. Just wait. Well, some people are blind now. Why let them wait, when we can cure them already?
Because we can't cure them yet without breaking other things. It costs too much to do it now, but we have a reasonable expectation that the price will drop, so it makes sense to wait a bit longer. It's kind of like asking why the country won't put 100% of its GDP towards healthcare. It technically could, but it would destroy itself in the process.
> Let's set up a fund to collect $850k for each blind person who is cured, thanks to this new treatment. And let the creators of the drug get that money in twenty years from now. They can wait patiently too, can't they?
That's... an interesting thought and maybe someone should bring it up with the company. Still, someone will have to bankroll that $850k x number of relevant blind people, and that someone may say it might be worth waiting a year or ten, so that the price is $85k per person.
(Also, in a way, this is how credit system works.)
That trade exists and people exchange goods and services for money, does not
mean there is no solidarity, or that there can be none. People -in capitalist
economies- give to charity. They help each other with personal problems. When
there is a natural catastrophe, they help each other. Public money is spent to
help those in need, even if they themselves cannot contribut to the communal
pot (e.g. with disability allowances and unemployment benefits). Public health
and public education are also prime examples of this.
I am prefectly aware that these benefits that come with simply being born into
a given society are not universal. For example, I know that in the US, neither
healthcare nor (higher) education are free. However, these are examples of
erosion of solidarity, that have been strongly criticised and should be
strongly criticised.
>> Because we can't cure them yet without breaking other things.
I don't see how this is the case. Where should public money be better spent
than in healthcare?
Also, btw, I'm really not convinced by the claim that "good things come to
those who wait" (in this case anyway). There are plenty of examples of drug
firms resisting the release of generic, cheap, alternatives to their
proprietary, expensive drugs. There is Martin Shkrelli, who bought Daraprim,
first in 1953, and hiked its price from $13.50 to $750 (per tablet). There is
the Mylan, who hiked the price of EpiPen from $94, in 2007, to $608, in 2016
(Epinephrine was first approved for marketing in 1987).
There are also examples of technologies becoming cheaper, but I'm particularly
interested in medical technologies, not computers. I don't care if computer
become cheaper and available to everybody. People can live without computers.
They can't live without, well, without drugs that keep them alive.
Healthcare is a practically infinite money sink, so there have to be limits somewhere. Especially that beyond some point, it becomes cheaper to save an additional life through spending on e.g. policing than healthcare.
Don't get me wrong - I'm not saying everything is perfect in the way our society allocates resources - just that it's a bit too much to condemn it entirely for not providing a quality-of-life improvements (blindness is tough, but not life-threatening) for free, to everyone, just as they come out of the lab.
That would be a start. Public healthcare, in the European model, would be ideal. It's true that it's a huge money sink, but that can be managed somewhat- by cost/benefit calculations, which sounds harsh and inhumane but is I think is justifiable.
I agree and maybe should have stated it more directly - I'm from Europe after all, and I enjoy the European model. Unfortunately, public healthcare doesn't fund drug development itself and, given the costs involved, it would probably be hard to make happen without serious reallocation of budgets in at least member states of EU (which wouldn't be a bad idea, for many reasons, but we both know it's not going to happen).
Well, it doesn't fund it directly, but I think, since the public is paying for the drugs, the companies that make them can afford to spend money on them, knowing that they will be able to sell them afterwards, even at a raised price (the public can afford a lot more than individuals can). So there's an indirecty subsidy on drug development, I guess.
Which is fine by me, to be perfectly clear. If people can access the drugs they need, then fine, let the companies make a profit, why not. I mean, within limits and all.
The mistake you're making is in ignoring the consequences of the decisions you imply.
for those who can afford it. The rest can go get stuffed.
Originally, computers were huge, laughably simple, and could only be afforded by governments. Thanks to the investments of those governments, then rich corporations - computers improved exponentially while costs decreased exponentially. The rest weren't getting "stuffed". The rest are the beneficiaries of progress predicated by those initial computers.
So on the whole, the moral decision is to not steal the drug, even when your relative needs it.
This is a good example of where you have the ethical lesson at your fingertips.
then that's already a society that is not serving its members' interests
But then in the next sentence you throw that lesson away without solving the problem that the reasoning solved in the first place. The lesson is that you can't view the ethics of a situation in isolation. You have to consider the wider consequences of destroying the incentive for some to use their free time to research drugs and create inventions.
>> You have to consider the wider consequences of destroying the incentive for some to use their free time to research drugs and create inventions.
I'm sorry, but the incentive is right there: curing a person's blindness. Curing cancer. Curing HIV. Helping people live longer, healthier, happier, more productive lives. These are worthy goals and most scientists will at the very least recognise them as such. Most anyone will recognise them as such.
But you're talking about monetary incentives. And that's the higher moral ground, is it?
Curing someone's blindness, or cancer, or HIV, won't pay one's bills (unless the patient fronts you the $850k, that is). And by "one's bills", I mean the bills of the research team, the lab technicians, the doctors, people on the distribution pipeline, people who design, build and sell advanced machines and material that is used at every stage of drug's research and development, and people who test it all and independently ensure the new drug doesn't hurt instead of helping.
The price tag isn't so high because someone wants to get really rich off other people's suffering. It's so high, because to develop a drug, we need to employ ridiculous amounts of resources of our civilization, in labour, knowledge and material.
Until we hit post-scarcity, where all the basic needs can be fulfilled pretty much for free, money will be driving things. Those are the constraints under which we work today.
>> Curing someone's blindness, or cancer, or HIV, won't pay one's bills
(unless the patient fronts you the $850k, that is).
Of course, people need to pay their bills. And I need to get the life-saving
drug that's too expensive for me to buy. So, if it's OK for you to price that
life-saving drug so high that I can't afford it, because you have bills to
pay, then it's certainly OK for me to steal it from you, because I have a life
to live.
If you don't help me to stay alive (or to cure my blindness etc), why should I
help you pay your bills?
FWIW, if I were in that position, I wouldn't blame you for stealing that drug from me, and myself I would do my damnest to make it as widely available as possible.
But ultimately, it doesn't generalize well. Society will forgive you a lot in emergencies, but if a behaviour like this becomes common, it really would threaten the ability to provide drugs at all, and it would end up condemning to death much more people in the near future.
I understand that. I think the solution to that is to make sure people can afford the care they need, so nobody has to steal. Like I say in another comment, public healthcare in the European model, seems to work. I'm from an EU country and my medical bills have always been paid for by public money. I had to contribute a few times, for drugs etc, but nothing major- and people in dire economic straits don't have to pay anything at all.
That's what they said about indoor plumbing, air conditioning ect. Yea new technology is expensive to start. Should people not work on anything that cannot be made available cheaply from the get go.
Plumbing... I see more and more pvc and quick-connect fittings, and central manifold setups. Plus the robots that can print a house and install all the pipes in one day. It's all becoming modular.
I was a little sad for my plumber friend, but he isn't. He said, that at first this was a DYI build-you-own-house kind of thing, so customers he never had. Now, he is dealing with people who bought those houses, and even if it is quick and easy to fix, they don't want to or don't know how to deal with that. In addition, it takes him no time at all to do those repairs he can actually do more jobs during a day. So he is not losing any income, or sleep.
Marginal costs may be small, but the initial costs are large. Once the initial costs get repaid, and as third parties reverse-engineer the process, the price of the treatment will drop.
In a free-market R&D ecosystem, sure. The issue is, do we want that to be how it works. And its debatable how much of the initial cost should be loaded onto this cure, as the work builds on other work, and the technique will produce more interesting results in future.
And in this case, does it boil do to publishing the dna fragment? Is this another 'patenting a number' discussion?
I don't feel we want that to be how it works, but I also have no good ideas of how it could work differently, while retaining the speed of discoveries.
This drug will only work on, let's say 1500 people. Of those, let's optimistically say that 1/3 have insurance that will cover expensive treatment. So 500 patients can be expected to be treated by this drug per generation.
So this drug will optimistically get a revenue of $500 million per 2 decades or so, or $25 million per year.
The number generally thrown around for getting a new drug researched and onto the market is $200 million. So it will take 8 years just to break even (although likely front-loaded once it becomes known that this drug exists), and total revenue for this drug for the forseeable future is about 500 million.
Does this seem spectacularly unreasonable ?