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Comment by candiodari | Hacker News Reader

> 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.

Does this seem spectacularly unreasonable ?

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> Does this seem spectacularly unreasonable ?

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...

Why ?!

Revenue seeks after profit. There are many diseases too rare to be feasible to research and develop on a cost/benefit revenue basis.

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.

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.

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...

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.

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.

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".

You're right, there needs to be a limit. It's a hard decision to make which treatments will get funded and which won't, but it has to be made.

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.

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.

I agree.

I'm not advocating for unlimited healthcare funding - just against expecting healthcare to fund itself.

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.

Science and technological progress is not a zero-sum game.

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.

So, hold on, are you volunteering to pay for more people to be sick and disabled because we decided it just wasn't worth it to cure their illnesses?

> $200 million

Doesn't seem to stand up to scrutiny, e.g. http://blogs.sciencemag.org/pipeline/archives/2017/10/18/dru... quotes $2bn as a more reasoned number.

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?

No, it doesn't.

It would just really suck to be one of those 1000 that have gene and can't afford the drug.

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.

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.

Which is bizarre, because we already publicly fund a huge amount of end of life care.

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.

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.

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.

Thank you, that's a great example. I'm sure that they don't call it a "dood paneel" but in effect, it's a death panel.

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.

Lots of fear-mongering about this.

>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.

When the government does, people are just stuck.

Take a look at the Canadian system. There have been multiple attempts to create a parallel private system and they have been shutdown.

Canadians end up going to the US if they want more than what the public system offers.

One of the first patients cured in the research of this drug was a child:

http://www.chop.edu/news/children-congenital-blindness-can-s...

They would be in the same position as they were before, only without that system it wouldn't be worth researching the drug to begin with.

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.

No, everyone would try to get it for free and there is a chance that the poor people become rich.

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.

>They would be in the same position as they were before

No they wouldn’t. They’d have the knowledge that there’s a cure and they can’t afford it. I can’t imagine how psychologically damaging that would be.

> 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.

In other words, for these patients, complaining loudly about it just went from "completely pointless" to "the most valuable activity I could ever do".

Now if we can only remember that detail when it inevitably makes the newspapers.

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.

It only accounts for patients in the US. Expand that market (or, if it's regulatorily fiddly, pursue those patients).

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.

Medicaid will pay as blindness is a qualifying disability. It’s a second payer though which is why some people will go through insurance first.

Will Medicaid be around much longer? Given the upcoming deficit created by the tax "reform"..

Yes, most likely. It is also a 50:50 funded partnership between the States and Feds. Also as we've seen things can change quickly in politics.

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.

Whats unreasonable are the research costs. I would look into that.

>The number generally thrown around for getting a new drug researched and onto the market is $200 million.

How much of the number is:

1) due to BS (as opposed to useful, e.g. for safety) bureaucracy

2) padding from the pharmaceutical, just because they can?

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