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Comment by superquest | Hacker News Reader

No, it doesn't.

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

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.

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...

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.

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