The analogy I've heard for early detection of neurodegeneration is that it turns the condition from terminal to chronic. This is similar to how late detection of HIV usually means AIDS and death, now it means a manageable condition, but life.
Interestingly, there are a companies working on this from different angles. Here's one doing it with voice analysis: https://auralanalytics.com/
2. Different diseases -- there are many similarities in underlying processes of neurodegen diseases, but there are many complexities that makes each one a unique, difficult to understand pathophysiology
*Etc is the exciting area, w/ startups still in stealth
I'm not sure I'd want to know, but I'm falling on the side of not.
I've a family member with [brain] health issues and the idea that I'm going to end up that way is absolutely consuming me at the moment. If there's treatment then that's great; without treatment then I think you're better not knowing. Ignorance is bliss, as they say.
I think that works in the last few years, but Parkinsons is quite slowly degenerative I feel, so sufferers experience obvious symptoms a long time before it kills them(?). Knowing for a decade in advance ... that's too soon to "get your affairs in order" and I can't see it would affect your ideology more than realising you'll die at some point in the future any way ...?
There are other ways to get your affairs in order. If I knew I was going to die at 65 I would have an extra 25k/year to spend on having fun now (401k+IRA savings). My family history suggests I will live until 75-85, so I'm saving that money to enjoy retirement, but if that won't happen.
Of course advances in medical science happen all the time. If I know that in 30 years I'll die of X, putting $50/month into research on a cure for X can make a real difference. (My contribution alone of course means nothing, but with all the other people who like me know X will get them doing their $5-$100/month - depending on what they can afford)
> Knowing for a decade in advance ... that's too soon to "get your affairs in order"
It's never too soon to "get your affairs in order". What if you have a car accident later today and end up in a paralyzed state? I don't mean to be grim, but this is what Advance Directives are for (also known as a Living Will).
As long as you are well, you probably should re-evaluate this every 10 years. If you're in your 30's, you probably want as much as possible done to bring you back if something bad happens. But if you're in your 50s or 70s, you may prefer a different trade-off. By default, the healthcare providers must do everything they can to treat you but undergoing invasive (and risky) procedures may not be worth it and leave you with a worse quality of life.
Example: you fall hard and fracture your hip. If you're in your 30s, you probably want to get surgery and get put back together. Your body is strong, it is likely to recover well. But that same problem in your 80s might be better handled with pain medication and other ways to maintain a quality of life. At the same time, if the accident is something like getting paralyzed, you may have various preferences as to how long or how much effort you want to be put into maintaining you (eg. if you are in a vegetative state).
Here's a more detailed guide and pointers to prepare your own documents:
I some countries you can chose yourself when to end your suffering. I'd definitely want to know as early as possible so that I can arrange something like that.
"A large array of promising diagnostic methods have been floated in recent years, from blood and eye tests, to a remarkable recent study suggesting a smell secreted by the skin could signal the presence of the disease."
My wife and I have been shopping for long-term care insurance. We're not in the zone where it's completely necessary yet, but we wanted to be in a policy before our health starts to degrade. Even the agents we've talked to so far think we're early, but not too early.
But I fear that tests like this will make LTC insurance very hard or even impossible to get for some people. Perhaps that's fair, if the test can confirm with 100% accuracy that you'll be a victim of a degenerative disease.
And thus, the problem with for profit insurance. I know nothing of economics (so I'm not making claims how insurance should be), but it's a shame that we have to fear insurers knowing that we'll be sick and rejecting our quality of life.
As a "modern" civilization I just don't think you should be concerned with for-profit entities deciding you'll cost too much and denying your basic quality of life.
Even if it’s not for profit and it’s just a sharing pool your share would need to be way higher if we knew that you would be taking a big chunk of everyone’s contributions no?
Do I pay less to public education if I have no kids? Do I pay less to fire or law enforcement if I've had no fires or incidents with law enforcement?
So why would the inverse be true for healthcare? All the healthy people would pay less than the unhealthy people? If the system is designed correctly, we all would pay enough that we all get coverage. Full stop. If we didn't, it would basically be "for profit" even if it was government run. Or, at least as I inferred how you envisioned it from your comment.
This isn't a reflection of you or your comment, but it makes me think. I'll never understand why my neighbors in America seem so obsessed with a "fair share" and ensuring that no one takes more than them. They're so worried with people exploiting the system that they happily let people die whose only fault was getting sick. Ironic for a nation who claims to be the largest Christian nation.
I happily pay my taxes to what I believe are in the common good. Education and stability are huge ones in my mind. My neighbor has kids and I don't, but I happily pay to help his kids go to public school. Why? Because I want them to be educated, thoughtful and productive members of society. Not just for them, but for me as well.
Even beyond self good though, I just can't ignore the sick. That families have to suffer a fathers cancer while simultaneously wondering how they'll pay for it is sickening to me. This doesn't sound like something a "Great" country would do. Christians confuse me.
That's the right way to think about it when choice is involved, for example smoking. You choose to smoke, you belong in a high risk pool. But if it's something that could happen to any one of us, then we all belong in the same pool. We know a congenital heart defect is going to be expensive- but any one of us could have been born with one.
I think there is a coming fight over whether insurance can pool & price discriminate based on other things too, like healthy eating or active vs sedentary lifestyle. Eating junk food & laying on the couch your whole life has always been high risk but now with technology it could be measured & priced.
No - the whole point of pooling would surely be that you don't pay for your own misfortune (or profit from good fortune.)
It really just becomes a poorly implemented version of general taxation though. Funding health and social care from taxation is of course not a new idea...
Yeah but if you don’t balance it against the risk factors you blow out your pool... similar to why taxation wouldn’t be sustainable, you’d end up with a significant portion of the population eating the pool without contributing, and a very small minority being forced to cover them, effectively farming “consumer humans” and thus an ever growing tax rate.
Does the evidence from countries with tax-funded healthcare and social care bear this out? Are you assuming that everyone will eventually have a Japan-style ageing population timebomb?
Somehow this system works for 50+ other countries in the world, but when it comes to the US its only discussed in hypotheticals.. completely insane. Somehow the others already have a functioning system without a tax rate of 100%...
I wonder what is the minimum resolution required, it really matters how widespread those checks can be right now, after they are adopted by the doctors.
Managing symptoms, like you call it, also happens to slow down the progression. And right now it’s a good option to consider. The neurological disorders are very hot and tends topics in Academia and Pharma, the pace of the discovery and trials is “mind blowing”, compared with a decade ago.
Interestingly, there are a companies working on this from different angles. Here's one doing it with voice analysis: https://auralanalytics.com/