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Comment by ponector | Hacker News Reader

I don't agree that it is nothing. 2 millions, if applied properly, could do good for many people. Take ten children from poverty, give ten children chance to get a good education, etc.

There is always a some kind of moral dilemma: should you spent millions to try to extend extremely I'll person or help with that money to some healthy poor children?

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> 2 millions, if applied properly, could do good for many people.

Its very close to the lifetime average financial cost of medical services related to sickle cell disease for those with it, from things posted elsewhere in the thread. So its literally just paying the same (loosely) financial cost up front and then not having them suffer through the disease.

An incentive structure that encourages mostly making the wrong decisions on things like this when it comes to cost/quality-of-life is why the US has the most expensive healthcare system in the developed world on a per capita or per GDP basis, and doesn't have better-than-typical general outcomes to show for it.

To be fair, those incentive structures also encourage the development of what everyone knows going in will be—initially—absurdly expensive treatments.

Over-under on when the NHS agrees to pay for this?

Such a crass statement. What if you're the patient? Would you spend 2 million to live 30-40 more years? It's so easy to step back and weight the lives of other as if you're making the decision for others.

Crass, sure.

Not sure it's really easier though, economics and emotional affect are often at odds. Ask people if a hospital administrator should spend 100k on either a single liver transplant for an 11 year old girl, or spread over 100 less expensive life saving interventions for 50 year olds, most people will say save the girl and demand the administrator be fired for even needing to think about it.

(Half remembered but apparently real scenario, though I'm not sure where from)

Why? The way health insurance works, all of those are profitable treatments. There is no "choose one or the other". Sick children/adults becoming healthy adults that can pay for health insurance is not a moral dilemma.

What are you asking "why" about, exactly?

Of course I will do anything to prolong life of myself and my family, like any human being.

But as a society with limited resources we need to set priorities. I hope everyone will be able to receive treatment.

However, such treatment is only for rich people, or from rich countries.

Even some countries in Europe are not reach enough to pay for such medicine. Like Zolgensma, which also costs around 2 millions USD to cure SMA.

The median income in America is a little under $40000 per person[1], so that $2.2 million pretty much represents the entire financial income of the average American over a working lifetime (55-60 years).

So in essence, you'd be trading the equivalent of one person's entire lifetime of productivity in exchange for the first generation of a radical new medicine whose outcome is unknowable.

I don't think it's crass to err on the side of caution for such a scenario.

[1] https://en.m.wikipedia.org/wiki/Per_capita_personal_income_i...

These people mostly do get treatment now, for decades, involving regular expensive long term hospital stays. So you're trading already expensive treatments that cut their earnings potential drastically both by cutting number of productive years but also due to extensive sick leave.

So if there even is an increase in the total cost of treatments, it's not at all a given it's a a net increase once account for decades of additional working life.

I see you are a fan of the MAiD program in Canada.

> What if you're the patient?

What if you are on those 10 poor kids he mentioned ?

I don't agree that OP statement is "crass". It's a very pragmatic and important question we have wrestle with.

Except those 10 poor kids aren't spending their own money to save themselves. The patient is though which is the point.

if it's their own money sure.

But almost all care services end benefiting from some sort of subsidies. Even if just by increasing the cost of inssurance for the rest of the population

The $2M represents a certain portion of society’s productivity, which is not unlimited.

Yes, but spending it preventing debilitating disease that would cost about the same amount over the lifetime of the sufferer is a no-brainer, even in net econonic output, terms.

But it is so only for few countries with ridiculously high costs of medical services. What about other? If we are talking about someone from south America?

2m is much higher that either costs or economical output the treated person could deliver through lifetime.

This is the effective altruism / utilitarianism insanity. If we only thought about "what the best use of $2 million is" we would still be living in huts.

What about real people who are living in huts right now? With few million you can drastically improve thousands of lives.

Are they not worth saving? Because they are far away and have small purchasing power there is small sense to help them.

Actually, utilitarianism and capitalism have been the strongest growth factors for human prosperity and welfare since forever.

Many societies with excessively strong opinions on morals however are literally living in huts.

>Many societies with excessively strong opinions on morals however are literally living in huts.

Setting aside that the US government is deeply influenced by Christian conservatism and the culture by Puritan ideals, to the point that no American President can be elected without vocally professing faith in God, Christ, or being seen with a Bible in hand, and thus is the most moralizing culture within Western civilization by far (particularly where sex and gender are concerned,) which hut-dwelling societies are you talking about, specifically?

Here's a graph showing the negative correlation between "hut-dwelling" and "utilitarianism":

https://www.pewresearch.org/short-reads/2019/05/01/with-high...

The US can be said to be both. E.g. you won't find many "huts" along the northeastern coast, but search and you'll find them elsewhere:

https://en.wikipedia.org/wiki/List_of_U.S._states_and_territ...

I'll leave it as an exercise for the reader to determine where the most "huts" are found.

So it's flat out wrong to claim that some sort of perceived moral bankruptcy with regards to the value of human life has left our society in the stone ages, when all evidence points to the contrary.

Under utilitarian capitalism people are expendable, but in the meantime they are less likely to dwell in huts than morally superior societies.

Note that I've blatantly equated religion with moral here.

I understand the dilemma, but many of those same children you are thinking of live in poverty in places such as Africa and with the misfortune of sickle cell disease.

If we prevented treatment because the money could be used elsewhere, we likely wouldn’t/won’t develop a drug that we could eventually[1] make cheap enough to cure these kids and give them longer lives too. We can do better!

[1] There is a cynical take here about drug costs, geopolitics, etc. but I am rejecting that cynicism.

As mentioned above—this is day 1.

How much did the first human genome sequence cost? (Effectively several billion dollars—now $1000.) How much did the first organ transplant cost? How much did the first electronic computer cost?

Yes, cost will slow widespread use but it will spur the. next wave of innovation—-some motivated by profit, some motivated by social altruism.

I wrote the OP :) I agree with you. What I was trying to highlight is that many of the people the person who originally responded to me was concerned about have the exact disease! And we need continued development with initial high costs to hopefully bring the costs down.

I'm sorry but the "cure" for that requires political change involving the stepping over of some people's corpses. You can only do that once people are sufficiently angry.

Healthcare? People pay to be and stay healthy. The money was earmarked specifically for this purpose. Also, in the long run, you will be able to cure diseases even those "healthy" children have.

It's possible to do both :)

Possible in theory. But real life shows neither will be done in enough quantities.

How? Society does not have unlimited resources.

Especially the one that extremely ill people need, humans.

People with sickle cell already cost the taxpayer a lot of money over their lifetimes. I wouldn’t be surprised if it cost more than this treatment.

Of course, in that case it is simple. I imagine dopa42365 was referring to a scenario where there was an alternative way to spend the money.

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