> Patients must spend weeks, even months, in the hospital before and after the therapy is administered.
Yoiks. So how many actual people are going to be able to get this treatment?
> Patients must spend weeks, even months, in the hospital before and after the therapy is administered.
Yoiks. So how many actual people are going to be able to get this treatment?
More info I found relevant regarding cost for typical treatment and out of pocket estimated costs: https://www.hematology.org/newsroom/press-releases/2022/the-...
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?
Especially the one that extremely ill people need, humans.
2m is much higher that either costs or economical output the treated person could deliver through lifetime.
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.
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
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...
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.
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.
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)
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.
Over-under on when the NHS agrees to pay for this?
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?
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.
Are they not worth saving? Because they are far away and have small purchasing power there is small sense to help them.
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.
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.
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.
The price you see now will likely shrink in the coming years. Pretty good opportunity for an analysis on CRISPR pricing if you have a well-trafficked blog and are willing to track this for the next five years.
There are a lot of steps in between "acute HCV infection" and "requiring a liver transplant", and many insurers, even today, will require you to go through some or all of them before considering paying for HCV antivirals.
That's not a great comparison. There was a previous cure for hepatitis C before the first antiviral-based cure 2013, and the initial treatment regiment for the antiviral based regimen was a hybrid of the two, before they settled on a fully antiviral-based treatment.
The reason that the antivirals came down in price so quickly was because so many nearly-identical ones came on the market within a couple of years. That's due to the discovery of a particular protein and corresponding class of inhibitors some years earlier, which was not patented, opening the door for a flood of drugs which are all functionally identical in purpose and mechanism of action, but chemically distinct and eligible for separate patent protections.
That came at a time when political and other pressures made some private insurers more willing to approve treatment (usually after a few rounds of denials and appeals) - but again, with an emphasis on some, because there are large classes of people for whom it is difficult or impossible to get treated for HCV today. (They're just not the ones likely to comment on HN).
Contrast to this treatment, which is for a congenital condition that does not have the same political pressure to address, and for which a significant financial barrier to access is not merely the costs of the drug, but the cost of the associated care (chemotherapy, etc.) which is not included in the quoted price. In addition the patent laws function differently in this case, to the detriment of patients.
The history of hepatitis C and its treatment is fairly idiosyncratic and it would be a mistake to use the price trajectory of HCV antivirals as a predictor for any other treatment.
"""Each treatment is an individualized “one-off” treatment. For this reason, a single treatment for a single patient is expensive. At present it is estimated that in the UK treatment will cost £1 million or more. In the US the estimated cost is $2 million.
That may seem prohibitive, but we need to consider the overall cost-effectiveness of the treatment, which means comparing the cost of treatment to the cost of managing each disease without the treatment. Sickle cell patient require frequent hospitalization, which can be very expensive. One analysis found that Casgevy can be cost effective at £1.5 million or $1.9 million. This is in range of the estimated cost. Also, the longer the treatment benefits last, the more cost effective the treatment becomes. A lifetime of transfusions or hospital admissions adds up."""
https://sciencebasedmedicine.org/first-crispr-treatment-appr...
If I were a betting man I'd wager the house that the above is exactly why it costs what it does. 'Pay 2 million now, or pay 2 million over the rest of the patient's life as they suffer' is a pretty inarguable value proposition.
Of course once patents expire and processes refine prices will come down. The wheel of progress rolls on (more of less) as intended.
Of course, insurance and taxation can be viewed as similar things anyway, but it is different from things like term life insurance or motor vehicle insurance or home owners insurance.
Humm no... It's just risk amortization...
The premiums are very explicitly a subsidy from young to old, which I view as a tax by a different name. Except instead of it being based on one’s income/wealth, it is based on age.
Health risks in general are very predictable and very high, especially as one ages.
I do not follow the point you are making here. The regulation and legislation around health insurance do not change the nature of it.
I think you are assuming that insurers have perfect risk assessments power and thus regulating them should be unnecessary. But they don't and we have to.
> The premiums are very explicitly a subsidy from young to old
You are just repeating your assertions here. I would love some arguments.
> which I view as a tax by a different name. Except instead of it being based on one’s income/wealth, it is based on age.
Sure, as long as we agree that is just your point view and nothing rooted in reality.
Instead of charging a sicker or older person $10,000 per month and healthier or younger people $100 per month because that is close to the expected loss in the calendar year for the insurer, they are mandated to charge younger/healthier people $1,000 per month so the older person can only be charged $3,000 per month.
Imagine a similar law for motor vehicles. The car insurance companies can only charge the worst and riskiest drivers 3x what the safest driver pays. Basically, you can keep getting into collisions and at some point your premium will stop increasing. Where will the money to pay for all the damages come?
> I think you are assuming that insurers have perfect risk assessments power and thus regulating them should be unnecessary.
I do not assume this. Insurance and tax/wealth redistribution is a spectrum.
When we offer a service to a group of person, and somehow mandate a flat price for that service. The people using the service less are subsidizing the cost for the people who use the service less.?
> The people using the service less are subsidizing the cost for the people who use the service more.?
Also, it is not a flat price, it is a capped price.
As an aside, think about how the optics would have been if the politicians were transparent that a significant portion of the tax liability to pay for the healthcare would be levied based on age.
Then think about older, rich people taking advantage of this and retiring early (between age 50 to 65), and because they can afford to have very low income (but a lot of assets), they qualify for even more subsidies during their most expensive years to insure, without negatively affecting their lifestyle.
The trouble is, as social cohesion breaks down, and demographic cliffs approach, people lose faith that long-term programs will still be there for them as they age. Perceptual time horizons shrink, and the arguments that you have made begin to resonate.
I don't have a good answer for either of those problems. Immigration solves the demographic cliff, but appears to threaten social cohesion. We can get into tedious and repetitious arguments about why that is, but let's please not?
When you (or your employer) buys a policy from UNH, Elevance, Cigna, CVS, Humana, etc, part of what they pay for is access to the MCOs pricing services. And vetting services to minimize errors/fraud (a process which itself is ridden with errors/fraud).
Not really, no. Most people will die of something expensive, but not $2M expensive. A quick google says that per-capita lifetime health care expediture is ~$300k.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361028/
That data is from the late 1990s, before the Affordable Care Act greatly expanded access to healthcare, and many new treatment options have become available since then.
What I meant, though, is that across a big population’s entire lifetime, there will be a ton of high healthcare cost events. And with technological progress, new treatments will always be coming out. Which is a great thing, just not what is typically thought of as an “insurable risk”.
Sorry, how does that follow? Insurance works any time you have a function with predictable average but high variance. Is the total health care expenditure across a relevant subscriber base in 2023 very close to 2022? Then you can make insurance work. It's just math.
Non insurable risk as in charging someone a premium unrelated to their specific expected loss (which is what health “insurance” is).
What you're saying doesn't make sense. There's no difference between health insurance and any other insurance in the way it works. You collect reliable and regular premiums from everyone, pay out unreliable/bursty (but statistically very predictable in aggregate!) losses as contracted, and pocket the remainder as profit. And it works.
Really, I don't know what you're talking about here. Health insurance is "expensive" in the US, sure. But it's not failing.
For example, if you carelessly drive and get into car collisions where you are at fault, your premiums go up, because your expected loss goes up.
In health “insurance”, it does not matter what you do, because your premiums are not based on your expected health costs. Hence it is more akin to a tax (or subsidy).
In practice, car insurers are allowed to partition their customers this way because it's felt to be "fair" and because it encourages safe driving. Trying to partition health insurance customers like that feels "unfair", and has minimal net benefit as health expenses aren't as controllable-by-the-subscriber as car accidents are. So we pass laws about how the partitioning gets done.
But again, "insurance" as a business model (and mathematical model) works EXACTLY THE SAME WAY. The only difference is how you draw the lines around who gets insured at what rate.
I do not dispute this. As I wrote in a sibling comment:
>Insurance and tax/wealth redistribution is a spectrum.
If this is a cure (I haven't looked at the data), imagine the NPV of a lifetime of multiple hospitalizations per year. It's likely in the millions.