If you are an insurance industry nerd, the TED talk from Amitabh Chandra on multi-million dollar cures should intrigue you. Some of my Duke Margolis colleagues are thinking through payment choices for these types of drugs and their thinking is still developing.
More interestingly and terrifying from an actuary’s perspective is this tweet:
1/ The possibility of using genetic prediction models to inform financial planning (esp purchases of life, disability, & long-term care insurance) poses a critical challenge if the models have substantial predictive value. https://t.co/p3yuFM242V
— Steve Joffe (@SteveJoffe) July 25, 2018
Insurance counts on the fact that group characteristics are knowable with reasonably small variance but characteristics of group members have wide variance. As member level variance shrinks, the insurance model is harder to implement.
I’ll be chewing on these thoughts until we enter the after Cyclon regeneration cycle news dump.
Steeplejack
Just helping out. Your copy has been pretty clean for a while. Howlers in the lead are never good. Feel free to delete this.
cgordon
I’m amazed that people think putting a price on saving a life makes any sense whatsoever.
kindness
While we know a lot more about decoding the genome than we did 50 years ago, there is so much we don’t yet understand. I don’t know how you could factor that into the equation.
For myself, I’d like to know personally but I’d prefer that information not be shared without my consent. So you can see where I am on this.
Spanky
@cgordon: “Hey! If it knocks a few bucks off my premium, you betcha!”
Everyone knows it won’t be their kid with the one-in-a-billion disease.
AnonPhenom
It’s a shame the insurers can’t get together and share people’s medical history so they can price in the extra risk…
Oh wait, they do.
$5 will get you $10 they’ll be a ‘scandal’ in the next decade about insurers/providers surreptitiously sending out blood, drawn ostensibly for things like CBCs, instead for genetic/epigenetic markers without the patient involved knowing it was being done.
Aardvark Cheeselog
I think the answer turns out to be “socialize both the profits and the costs.”
Brachiator
@cgordon:
There’s a knowable cost, whether or not people want to admit it.
@kindness:
Yep. Makes sense.
Ruckus
@cgordon:
It makes a lot of sense if you value money as more important than anyone else’s life. However if you are a normal human then yes it only makes sense to value life. Money is created, lost and can be regained, a life can only be lost.
Ruckus
@Brachiator:
For sure there is a measurable cost, but a measurable value? No.
For if there is a measurable value on any life then is it what that one life can pay? Or is it what that one life gives to the rest of us? Do you want your life to be valued by others if the push comes to shoving? Or is that value the one we have for our own life?
IOW the value is not measurable, while the hard cost can easily be. As a society do we use the hard cost as the value, which it absolutely isn’t or do we value all life?
Capri
As the grandmother of a child with cystic fibrosis this is a subject near and dear to my heart. Something that is worth keeping in mind is that while cure would be expensive, it may not be that much more than the current therapies that are needed to keep people with those sorts of diseases alive over the course of their lifetimes. I’d trade a one-time million dollar cure for 40 years at $100,000/year.
I once heard a TedMed talk that made that point – cures are relatively cheap compared to chronic treatments. A polio vaccine is way less than years in an iron lung.
Ohio Mom
Why, it’s almost as if pure Libertarian-capitalism isn’t always the only or best way to create what is needed. Who coulda thunk it?
Ohio Mom
@Capri: And that is why you can always find tinfoil hat wearers insisting that “they already have the cure for (fill in the blank for a chronic disease) but they make more money this way!”
Brachiator
@Ruckus:
The positive thing about universal health insurance is that it should let us provide health care for all citizens (and maybe non-citizens as well). But this does not mean that society can allocate or spend an infinite amount of money for everyone forever. Or even you say, yes, we will pay infinite amounts of money for everyone forever, you still have to find a source of revenues, and allocate resources.
I cannot say what your life is worth. But collectively, we can say what we are willing to spend to maintain it. The question inevitably arises and inevitably must be answered.
jl
Thanks for very useful and interesting links. I’ll look at them carefully.
I am skeptical, though. The demographic penetration of high payoff genotypes, and specificity and predictive value of the current tests, are usually too low to really be helpful.
Maybe these links have some new info that will change it.
Surprisingly, many pharmacogenetic indicators don’t correspond very well to conventional race/ethnicity or other demographic indicators. From what I have seen they really pop out at in various subpopulations that lurk underneath race/ethnicity, national origin, related genetic markers, and major haplotypes. So, until the costs come way down, there has not been much ‘business case’ or even social cost-effectiveness justification.
But maybe these links have some info I have not seen yet.
jl
@Brachiator: ” There’s a knowable cost [for life], whether or not people want to admit it. ”
I disagree. There is a knowable cost to small variations in mortality risk around a small base probability of death on annual basis. Estimates of the statistical value of life come from people’s decisions in those ranges.
Medical decisions, and access to medical care, operate over ranges of changes in mortality risk, and from a base mortality risk, after stroke, heart attack, cancer diagnosis and major accident, that are far outside ranges used for estimates of the statistical value of life.
We can put a price, value, cost, of life for an average persons’ average chance of falling down a well. But AFTER you fall down a well, then, no one has any idea how to put a value on life. If it’s not your fault that you fall down a well (for example, your neighbor’s negligence), one reasonable, and theoretically sound, answer to how much is the value of your life is however much is costs to get you out from the bottom of the well.
So, there are real dilemmas. A good strategy, not followed by the US health care system, is to take cost-effective measures to avoid situations where people have, effectively, fallen down a well.
ProfDamatu
@kindness: You couldn’t factor it in for common illnesses to which dozens of genes probably contribute, true, but there are some areas where it could be factored in fairly precisely. I’m thinking along the lines of the identified proto-oncogenes and tumor suppressor genes, mutations to which confer an increased risk of cancer that in some cases rises to a near certainty. As someone with a BRCA2 mutation, I’m resigned to the fact that I’ll never, ever be able to obtain life, disability, or long-term care insurance unless I happen to get hired by an employer who offers them, no matter how many years I’m cancer-free.
The obvious solution for insurance companies is to decline or price out people like me, but it’s definitely going to get a lot more complicated with genetic risks for illnesses like diabetes or heart disease or Alzheimer’s. So far, the genes that have been identified as possible contributors add maybe a couple of percentage points of risk, which often depends on the presence of other genes and individual characteristics – so a “decline ’em all” strategy might all but eliminate the business.
And yeah, we absolutely do need control over our genetic information. I’m not sure how that works when those companies get access to our medical records.
Ruckus
@Brachiator:
And you made my point for me. And others have reenforced that.
We do costs in a short term fashion, can we afford this cure today, not what will it cost over the lifetime with just treatments. At a time when we didn’t have science to actually find the cures for the many things that have changed, just in my lifetime the question was different. Now it is we can stop or cure a lot of things that often never would have been a question, as the victim would have died long before we could spend the money for even relief, let alone a cure.
From the evidence so far I most likely have an incurable but treatable disease, so what is the line for paying for my treatment? Not worth it to society? Yes it can be expensive, an expense that if I had to pay completely on my own with no insurance or VA I could never afford to do that and still house and live. Do I just suffer or do I get help from the other 95% of people who never will suffer? Because if you put a monetary cost on a life then that is the start of the end of any society. A society has to share the extraordinary costs of life or it isn’t anything close to a reasonable society. Now if you want to suggest that some will/are making an extraordinary profit on that societal cost, that’s a different question entirely.
Brachiator
@Ruckus:
Not really. People keep romanticizing economics. I understand this, but this is an evasion. I also realize that maybe we have been talking past each other.
Lawyers can kick me around, but I think that in some wrongful death cases, a jury may be asked to consider an award based on the “value” of a person’s life, and a customer service clerk may not be awarded as much as a rocket scientist. Here we are considering the value of a person’s life based on earning power and other factors. That’s the way this part of the system works.
We may be able to determine what we would have to spend in medical costs to preserve a person’s life. We might even have to limit what we pay. But this does not say anything about the value of that person’s life. We can separate the two concepts.
Obviously,in the past, societies have sacrificed the sick, newborns, and the elderly in order to preserve the lives of the majority. We live in a world now where the liberal minded among us want to assume that collectively, we can save everyone. I agree with the sentiment. But I also realize that we have to look at the costs and hope that we don’t bump up against limits that may strain even our advanced society.
However, and this is the fun thing. None of this is a zero value game. The NHS is having to deal with this currently.
But as the researcher noted, these challenges are a sign of success. The cost of treating the aged increases because our society is so advanced that more and more people can live to a ripe old age. And even though the costs are higher, older people have a better quality of life than in the past. And it also means that we get smarter about covering the costs and still maintaining the overall quality of society. In a nutshell, more old people is what you get when you have a good, advanced society in which people do not drop dead from illnesses and plagues and childhood diseases. It’s a feature, not a bug. So you have to learn how to improve the quality of life of your old people and how to treat them more efficiently. Or you start killing people off at age 50.
I wish you well. I hope that over the years we have learned how better to treat people with this ailment, and that the costs have come down. But this also includes costs of other treatments. If the costs of treating other illnesses decline and makes more money available for you, we all win.
So, maybe this is a long way around to say something simple, but reading about dumb ass Republicans helped me focus on my point. I’m in the tax business and look at things in terms of numbers, but try to include this in the human dimension. I think it appropriate to work from the assumption that we will take care of everyone. But this also means that you have to have people who consider the costs. And you try never to have to sacrifice anyone. But you also have to have people who understand that you may need to allocate resources and sometimes make tough decisions for the greater good.
Ruckus
@Brachiator:
Thing is that money is not the only factor. My life value is not based upon how much I have or how much I may earn for a couple of reasons. First, I don’t want to work a lot longer, maybe a couple of years, I’ve had a job and paid taxes for 56 yrs now. I’ve done my share. So my future earnings can not enter into the picture because I will only be a drain on the system. The system I’ve paid into for 56 yrs to have when I reached this stage in life. Second, not every one can be a doctor or a rocket surgeon, or even make Barbie doll molds. It isn’t fair to every one to account for their past lives in a financial manner. Lives and money are not the same thing, they just aren’t. That rocket surgeon and a bulldozer operator have dramatically different lives/finances and yet the one who we think has less monetary value overall may have in fact positively helped/saved more lives or none at all. We live in a world where we spend far more per person than say your example the NHS, with far less results. We spend far more on the military and ask way too much of those who serve because we want to be the worlds police but we can’t take care of the people who live here. I call bullshit. We’ve paid millions so that cancerous lump of shit who got elected can play golf, due to his bullshit we are supposedly going to pay 12 billion to shore up farmers bank accounts because of tariffs that his abject stupidity “thinks” is a good idea, and we are going to make a reasonable cost analysis of the value of your life or mine, or someone with much darker skin than either of us? I reiterate, bullshit. A life is not a cost value on a spreadsheet. If it was why are we upset about kids being separated from their parents? Why was the concept of the ACA welcomed when it wasn’t called Obamacare?
We have to be better. Fortunately that isn’t currently all that difficult. But it has to be part of our basic culture and assumptions that a life has a value far different than a simple check box on a form or an amount discussed on TV or we really aren’t any better than the shitgibbon, whose entire world revolves around the stick in his ass. And as I stated I will with glee talk about any way to bring down the huge costs of cures/treatments but we have to understand that often the cure is still monetarily cheaper than the long run. If we don’t, at some point if people start dying at a young age again, people will start having more kids, just like they used to do, when death in or from childhood was a lot more prevalent. And that puts a strain on society which is far more than simple monetary equations.
Bob Hertz
The cures are even cheaper if big pharma is not leaning to grab billions in profit. The polio vaccine was developed by Jonas Salk at Columbia (I think) and he never patented it.
The debate about cures has two truths:
a. We should be cautious about letting a tiny number of patients bankrupt our health plans;
but
b. Most of the cures are not that expensive if you strip out monopoly profits.