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Life with a Lethal Gene

Zonk posted more than 7 years ago | from the choose-wisely dept.

Privacy 279

charles robert darwin writes "The New York Times is running a story on young people who are choosing to get genetic tests for conditions like Huntington's Disease that develop relatively late in life. Apparently, while a genetic test for HD has been around for a while, very few people who have a parent with the disease choose to take the test. This story focuses on a young woman who did and tested positive. The piece follows her as she deals with the consequences. '...as a raft of new DNA tests are revealing predispositions to all kinds of conditions, including breast cancer, depression and dementia, little is known about what it is like to live with such knowledge.' With the HapMap and the $1,000 genome, this is something we are all going to face in one way or another very soon, and we really need to start thinking about it."

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279 comments

Ignorance is bliss (3, Insightful)

kaufmanmoore (930593) | more than 7 years ago | (#18392199)

We're all going to die sometime

Re:Ignorance is bliss (1)

Mad Merlin (837387) | more than 7 years ago | (#18392219)

Indeed. Personally, I'd rather not know unless there's something I can do to prevent it. In this case, it seems like that's not the case.

Re:Ignorance is bliss (5, Insightful)

pchan- (118053) | more than 7 years ago | (#18392259)

Why? If I knew I was going to die in 5 years, I wouldn't bother saving for retirement, or trying to get ahead in my career, or buying a house, or not getting that really nice sports car that I talked myself out of. I also wouldn't have any children if I would be passing on the disease to them, or just leaving them without a parent, for that matter.

I would also probably be bummed out for a while. But on a long enough scale, we are all dead.

Re:Ignorance is bliss (1)

WetCat (558132) | more than 7 years ago | (#18392273)

Why not buying a house, by the way? At least you'll pass your day in calm own home.

Re:Ignorance is bliss (2)

karmatic (776420) | more than 7 years ago | (#18392461)

Here's a hint - if you never have any equity, you don't really own anything. It's just as easy to rent from someone else as from the bank. Besides, with Record number of houses [housingdoom.com] , and Home sales dropping 4 years in a row [housingdoom.com] in some areas, what would be the point.

Besides, with the Subprime Meltdown [ml-implode.com] going on (41 major lenders down since Dec 31), you probably can't afford the payments on that new place anyway. You couldn't afford it before, but at least there were people willing to lend you more money than they should, figuring you could just flip it to a bigger sucker at a profit if you get in trouble. With median prices declining countrywide, that's not happening any time soon.

At the moment, you're better off "investing" in a new sports car or computer, you will make a better profit off them than that new home. That's true whether you are dying or not. (Don't believe me? Factor in the interest paid over the life of the loan, and the opportunity cost from not investing that money in something that earns interest. Adjust for inflation, and don't count the 2004-2005 years when people went nuts and drove up prices without a shift in the factors which should determine the price. You will _lose_ money buying a house, and it gets worse the longer you own it, even when it's not crashing like it is now.)

Re:Ignorance is bliss (1)

Virtual_Raider (52165) | more than 7 years ago | (#18392443)

The problem is that you don't always know. There are tons of people that get diagnosed with fatal deceases every day. Some of them get better. There are studies that underline the importance of your mindset when fighting any severe illness and statistics show that people with a good disposition fare better than those that just lay down and take it or worse, get depressed and sink. Every person is different and your values may make choose what you said, other may choose to take provisions and preventive measures, and yet others upon finding out that they have a predisposition to develop x-type-of-cancer would just take it as a given that they will and may end up turning a mere possibility into reality. I would suggest that in order to be eligible to take such tests people should first undergo psychological evaluation to find out if they can cope with a bad outcome and if not, postpone it until they have taken some measures to develop a stronger psyche. Of course some people here will disagree as many are as opposed as psychologists as they are to Microsoft and The Man in general =)

Re:Ignorance is bliss (2, Interesting)

Kandenshi (832555) | more than 7 years ago | (#18392537)

Indeed, you might pull through, but at least this way you can plan for it? Implement some specific changes to improve your quality of life/extend it for a while? Beyond the crap we're all supposed to be doing anyway :P

Your point is well taken generally though. When was Stephen Hawking supposed to be dead by? I know he was told ages ago that he just had a couple years to live... Dunno how great a quality of life he has atm, but apparently it's good enough he hasn't sought out someone to inject him with something funky.

Ah, there we go, wikipedia says:

Diagnosis came when Hawking was 21, shortly before his first marriage, and doctors said he would not survive more than two or three years.

Born: January 8, 1942 (age 65)

So yeah, he's been living for over 40 years since his predicted date of death. Good for him(and good for us for having benefitted from his work). My thinking that I'd be dead inside 10 years would probably change how I live my life right now. Or that I have a disease that I'll likely pass on to my kids for instance. Both would be good to know(for me). Probably shouldn't be compulsory to test people for everything under the sun and then tell them, but if they want it... *shrug*

Re:Ignorance is bliss (1)

Plutonite (999141) | more than 7 years ago | (#18392845)

Or... you could do all those things then finally break down emotionally in an amount of pain that would render this option not so much better anymore.
The difficuly here is that it's hard to put exact limits on the time-scale. The diseases are not very simple, and the chances of survival not perfectly determined. You can be told you will last a year or 2, but what if the number was 10? 15? Would you want to make those decisions?

GP post was correct. In some matters, ignorance is bliss.

Re:Ignorance is bliss (4, Insightful)

dvice_null (981029) | more than 7 years ago | (#18392909)

If you know that you are going to die within the next 5 years, it doesn't mean that you are going to die. When we learn about genes, it does not only give us the tools to know that we are going to die, it also gives the tools to prevent it from happening.

Re:Ignorance is bliss (1)

Kadin2048 (468275) | more than 7 years ago | (#18392261)

If you are literally living your life as if you might die in a handful of months, congratulations.

I know I'm not. If I knew that I wasn't going to live to be 40, I'd be living quite differently. I sure wouldn't be squirreling money away into my IRA with quite the gusto I'm now doing it, for starters.

Re:Ignorance is bliss (1)

Mad Merlin (837387) | more than 7 years ago | (#18392333)

If you are literally living your life as if you might die in a handful of months, congratulations.

I didn't say that, nor would it be necessary for me to feel the way I do. I think the feeling of impending doom and the realization that any of my plans involving more than a couple months are now useless would outweigh any short term benefits, such as driving around an expensive car for a few months (as the poster above mentioned).

Would you truly prefer to drive $expensive_car with the knowledge that you're going to die quite soon vs the ignorant bliss?

Re:Ignorance is bliss (2, Insightful)

Kadin2048 (468275) | more than 7 years ago | (#18392469)

Ignorance is rarely bliss, at least in my opinion. A very large percentage of my, and I'd wager most people's, life, involves doing things that aren't precisely enjoyable for some future gain.

If I knew I was only going to live another six months, you can damn well bet that I wouldn't be showing up for work on Monday. It's not that I dislike my job, precisely, but I don't go there for entertainment. There are a whole lot of other things I'd like to do that would by far take priority.

It's not a question of just going out and buying an expensive car, it's going out and doing all the things that I had planned on doing over the course of a lifetime, without the financial or logistical burden of actually feeding, clothing, and housing myself for the next 50-odd years.

Re:Ignorance is bliss (4, Insightful)

Mad Merlin (837387) | more than 7 years ago | (#18392645)

I think you should also consider that the anticipation of doing something is often better than the actual doing of something. When you find out you have, say, 3 months to live, you can no longer anticipate to do a lot of things, and that makes your last 3 months of living rather miserable, if you ask me.

I guess what I'm really saying here is that my plans for the rest of my life are far more important to me than anything I could do in a final 3 months, regardless of any knowledge of my imminent demise.

ATTN: SWITCHEURS! (-1, Offtopic)

Anonymous Coward | more than 7 years ago | (#18392255)

If you don't know what Cmd-Shift-1 and Cmd-Shift-2 are for, GTFO.
If you think Firefox is a decent Mac application, GTFO.
If you're still looking for the "maximize" button, GTFO.
If you don't know Clarus from Carl Sagan, GTFO.

Bandwagon jumpers are not welcome among real Mac users [atspace.com] . Keep your filthy PC fingers to yourself.

Re:ATTN: SWITCHEURS! (0)

Anonymous Coward | more than 7 years ago | (#18392397)

If you're not crippled by a fatal birth defect, GTFO!

Re:ATTN: SWITCHEURS! (-1, Offtopic)

Anonymous Coward | more than 7 years ago | (#18392415)

Are all Mac users such filthy, disgusting perverts [atspace.com] ?

Re:ATTN: SWITCHEURS! (0)

Anonymous Coward | more than 7 years ago | (#18392459)

Are all PC users such prudish, uptight squares? I bet you've only ever had sex in the missionary position.

Re:ATTN: SWITCHEURS! (0)

Anonymous Coward | more than 7 years ago | (#18392511)

I don't know, I think I'd have to agree that licking those particular feet is a pretty disgusting thing to do.

Re:ATTN: SWITCHEURS! (0)

Anonymous Coward | more than 7 years ago | (#18392545)

Maybe, but at least it was with a woman.

Re:ATTN: SWITCHEURS! (0)

Anonymous Coward | more than 7 years ago | (#18392575)

And only ever with women. All the straitlaced linear thinkers of the world must be so proud.

Re:ATTN: SWITCHEURS! (0)

Anonymous Coward | more than 7 years ago | (#18392553)

If you think that the thought of anyone licking those hairy, nasty hippie feet is in the least bit erotic, then I'm more than happy with being a "prude" in your mind. There's good dirty and bad dirty. That, my fapping young virgin, is bad dirty all the way.

Re:Ignorance is bliss (1)

TodMinuit (1026042) | more than 7 years ago | (#18392257)

Not if you find enough 1ups.

Re:Ignorance is bliss (1)

Seumas (6865) | more than 7 years ago | (#18392321)

I can't believe that was modded "insightful". Good grief! :P

Anyway, I'd want to know if I was going to die young so I could choose to live wrecklessly and enjoy all the stuff I'm not supposed to enjoy. Honestly, if you know you're only going to live to be 34 years old, then what's the point of worrying about eating fast food, boozing, smoking and humping anything with a pulse? Live the good life without paying any of the consequences.

Re:Ignorance is bliss (4, Insightful)

TodMinuit (1026042) | more than 7 years ago | (#18392355)

But if enjoying life is doing everything that is bad for you, why not do all that stuff anyways? If you avoid it, by defintion, you haven't really lived.

Re:Ignorance is bliss (4, Insightful)

DrEasy (559739) | more than 7 years ago | (#18392427)

But how about the people you care about and who care about you? They probably would like you to live a long life, even though it may contradict your "live fast, die young" credo.

(BTW my .sig has never felt more a propos)

Re:Ignorance is bliss (2, Funny)

khallow (566160) | more than 7 years ago | (#18392815)

But if enjoying life is doing everything that is bad for you, why not do all that stuff anyways? If you avoid it, by defintion, you haven't really lived.

Is it? One approach to this seems to involve activities that the person cannot recall afterwards and romantic entanglements that they wish they could forget.

Re:Ignorance is bliss (1)

ghostdancer (72944) | more than 7 years ago | (#18392453)

Ignorance is not a bliss, is a curse.

Re:Ignorance is bliss (0)

posterlogo (943853) | more than 7 years ago | (#18392929)

Wow, that's the most pseudo-profound bullshit I've heard on Slashdot yet. Bravo.

yawn... (3, Insightful)

Dance_Dance_Karnov (793804) | more than 7 years ago | (#18392201)

let me know when something can be done about these genetic defects.

I for one.... (-1)

Anonymous Coward | more than 7 years ago | (#18392215)

do _NOT_ welcome these overlords.

How would this affect insurance? (5, Interesting)

Rix (54095) | more than 7 years ago | (#18392223)

Would one be obliged to inform insurance companies of this "pre-existing" condition. If so, it seems one would probably be better off not knowing.

Re:How would this affect insurance? (2, Funny)

Whiney Mac Fanboy (963289) | more than 7 years ago | (#18392265)

Would one be obliged to inform insurance companies of this "pre-existing" condition. If so, it seems one would probably be better off not knowing.

Don't worry, the free market will sort it all out! I mean the free market is the reason America has the best system of health care in the world (and so cheaply). I mean, if one company refuses to insure you, you'll just be able to... oh wait.

Re:How would this affect insurance? (-1, Troll)

bendodge (998616) | more than 7 years ago | (#18392353)

America's health care system (and education system) are socialist. People used to ask the doctor beforehand what the bill would be. Now they just see what federal program they can get to pay for it.

In spite of this, it is still some of the best quality care in the world, although it might not stay that way.

Re:How would this affect insurance? (1)

AshtangiMan (684031) | more than 7 years ago | (#18392429)

Please define socialist in this context. Does it mean that everyone has access to health care? Or that health care is equally bad for everyone? I see the word bandied about (mostly as a derogatory flame) but feel that it is a) misused, and b) misunderstood. So I am curious about your usage, not trying to start a flame war . . .

What have you been smoking? (3, Interesting)

Rix (54095) | more than 7 years ago | (#18392515)

Usian health care is comparable to developing nations for people who can't pay for more than what's freely available. That's the only metric that has any meaning, as the rich can always travel to where the best care is available.

Re:How would this affect insurance? (1)

Bwian_of_Nazareth (827437) | more than 7 years ago | (#18392579)

I am too lazy to google for sources, but according to some, we (Czech Republic) have the same level of health care as USA but the total spending per capita in CR is equal to red-tape overhead per capita in USA.

More to the point, insurance operates on infomation asymetry, it cannot exist in economic models where transactions are based on full information (like the perfect competition model of free markets).

Re:How would this affect insurance? (1)

honkycat (249849) | more than 7 years ago | (#18392623)

Why can't it? It's trivially obvious that it's more expensive, on average, to have insurance than to pay costs out of pocket because the insurance companies have to profit somehow. However, most of us can't possibly afford the worst-case medical bills that could arise and be covered by insurance if we were unlucky enough to need it. Therefore, we don't pay extra for insurance because we're misinformed, we pay for it to spread the cost of unlikely expenses over a large number of people.

Can you explain your statement further?

Re:How would this affect insurance? (1)

Bwian_of_Nazareth (827437) | more than 7 years ago | (#18392713)

Nice description of the problems can be found in Tim Harford's "The Undercover Enomonist".

The main point is that as information becomes better, the only people who will buy high insurance would be people very likely to need it. And on the contrary, if insurance companies would get hold of this information, they would not sell some products to some people. The utility of insurance is different for different people and with information available, insurance companies would have to price discriminate, otherwise they would not be able to sell.

Insurance works for insurance companies because a lot of people who don't need it (i.e. they are bloody healthy with no genetic predispositions) pay way too much, but they do not know any better so it is a rational decision on their part. On the other hand, insurance works for clients because insurance companies sell to people where is does not make sense (they are bloody ill and predisposed to even more). And both sides even out. (NB. I know that in individual cases even healthy person can become ill... but this is about probabilities and how accurately we can estimate them, not about being certain.)

When information becomes available, the situation would become uneven - insurance companies would sell at prices that would much more closely match true expected outlays for individual clients. This would be necessary because healthy clients would not be willing to pay more and ill clients would be forced to pay more or be deprived of the service (please note that I am using "healty" and "ill" in a very broad sense here).

The product would change from "insurance" to "saving", the cost would not be distributed between the broad population but rather population segments with similar expected cost of treatment because there would be no incentive to pay more than true expected cost. Of course, this is only the "I know the future" scenario, but every shift in making the information available moves us towards insurance that becomes unavailable to those who need it - because it approaches the true cost of treatment.

PS: Hmm, now that I think of it, I probably should not have written about asymmetry, but rather information availability

Re:How would this affect insurance? (1)

Seumas (6865) | more than 7 years ago | (#18392791)

Speak for yourself. I go to the doctor and when I leave, I find out how much was covered by my health insurance. Usually almost all of it. Then I pay for the rest. Not a big deal. Healthcare in America truly sucks ass if you have none at all, but it isn't this horror-fest that everyone makes it out to be. I've had full coverage since I was about 19 through my employer. It's unfortunate that some fifteen percent do not have coverage and I'm all for finding a way to help them out as long as it doesn't mean sacrificing my own coverage quality, but people seem to think that the only way you see a doctor in this country is if you suck the state dry or sell your soul and that just isn't true.

Re:How would this affect insurance? (3, Informative)

Bob54321 (911744) | more than 7 years ago | (#18392319)

Yes you would. Currently when going for health insurance you have to inform the company about all pre-existing conditions and even familial medical history. That way they can charge you the right amount relative to the risk they have of paying out. That is how insurance works. If you know you had a genetic defect, it will be required you tell them - you would expect a discount if you have tested negative so expect to pay more if you test positive. On the other hand, if you haven't been tested, and don't want to, then the insurance should not be able force you to take one. Some countries have laws preventing this but many countries still need to deal with that eventuality. It may take a while and, from a practical perspective, it still is only a minor issue at this time.

Which is why insurance needs heavy regulation (2, Insightful)

Rix (54095) | more than 7 years ago | (#18392491)

Under that system, the optimal strategy is to know *nothing* about your health. Don't have any tests taken, and especially don't talk to your parents or other family about their medical history. That way you can honestly say you know of no medical issues you may have. This is of course bad for everyone involved. You can't seek preventative medical care, and end up costing the insurance provider more.

Yet another example of a problem a free market cannot solve.

Re:Which is why insurance needs heavy regulation (1)

karmatic (776420) | more than 7 years ago | (#18392541)

So why not just get the insurance, then get tested. If preventative care is cheaper for the insurance company, then the company should be willing to provide for it, since you are now their problem.

As far as my insurance company goes, they do pay for some testing and preventative measures. Answer me this - why should an insurance company be required to accept people who are known risks (especially ones who choose to do so - smokers, etc.) More importantly, why should I pay higher premiums to cover them? At my last job, we had an obese diabetic who worked there just for the insurance (by his own admission), and his diabetes and obesity were a function of low self-control (again, by his own admission). Someone has to pick up the tab for his insurance premiums, and who should it be? Me? The taxpayers? The employer (who of course passes it on to the customers and employees).

Insuring someone like that is extremely expensive (really high risk), so the premiums must be higher for him. If not, they are higher for everyone else, or they don't insure him. The free market "solution" is to charge him a crapload of money, or don't insure him. Socalism makes every one else suffer for his stupidity.

Yet another example of a problem that socalism can't solve. The free market solution may not be much of one, but it's certainly better than the alternative.

Re:Which is why insurance needs heavy regulation (1)

Rix (54095) | more than 7 years ago | (#18392621)

So why not just get the insurance, then get tested. If preventative care is cheaper for the insurance company, then the company should be willing to provide for it, since you are now their problem.
Or the insurance company can "lose" your premium cheque, and cite non-payment as a reason to drop your policy. Never assume good faith on the part of insurance companies, it's a bad wager.

why should an insurance company be required to accept people who are known risks (especially ones who choose to do so - smokers, etc.) More importantly, why should I pay higher premiums to cover them?
Because that is the function of insurance; to spread uneven risk over a large group. If you don't like that, don't buy into an insurance collective in the first place.

The free market "solution" is to charge him a crapload of money, or don't insure him.
From the insurance companies position, you're right. From his position, the solution is to cover his ears and shout "I can't hear you" whenever anyone in his family talks about their medical history.

Re:Which is why insurance needs heavy regulation (2, Insightful)

bmo (77928) | more than 7 years ago | (#18392693)

There but for the grace of God go you.

No, I'm not being particularly religious, but you must be either 20 or younger, or you've never had a disease in your life. It must be so wonderful to not have a chronic disease.

Insurance's purpose is to _spread the risk_. Once you get away from that, you may as well abolish insurance altogether. The thing is before we had health insurance the situation was worse than what we've got right now. Health problems basically bankrupted you then. Either that or you died.

If you're such a free-marketer, answer me this: How could I _ever_ become involved in starting my own business? I could _never_ get insurance due to a pre-existing condition. The only way for me to get it is to work for someone else. This particular fact is largely ignored by people who decry the Canadian system. However, if we had a Canadian type system (Single payor health insurance, like OHIP) I could open a business tomorrow and not worry about meds or hospital emergencies.

So you've got good health. That is only a temporary condition.

--
BMO

Re:Which is why insurance needs heavy regulation (1)

some damn guy (564195) | more than 7 years ago | (#18392683)

I'll go one step farther. The medical insurance industry needs to not exist in it's present form. Unlike almost every other form of insurance everyone will need medical care at some point. The medical insurance industry is simply a giant bureaucracy intended to get money from healthier people and screw the ones that will actually need care. INSURING EVERYONE WILL NEVER, EVER BE PROFITABLE. Period. Not everyone will have a house burn down, but everyone will get sick.
 
So you are right, the free market cannot solve this problem. In fact, it has a vested interest in seeing that the problem isn't solved. Those that think this is just socialism running rampant don't understand the problem.
 
We need universal health insurance for everyone: you are born, you are covered until you die. It would cost less, overall, and provide better care, overall. People will always be free to buy extra coverage, if they don't like the default coverage, but lets face it most of our private plans aren't anything particularly spectacular. Mine isn't. Almost everyone would be better off, those that aren't can always pay more, and we will no longer be punishing employers who do the right thing and provide reasonable health plans. We aren't talking about the government running the health care system, just providing the insurance.
 
Of course we can't just put the medical insurers largely out of business, for political reasons, so we will be stuck eventually with a Massachusetts-style health plan that just passes on the bad risks and the broke to the government and lets insurers still make a bundle. Oh well, at least people will be able to sleep at night if they lose their jobs (perhaps because they got sick).
 
The high cost of medical insurance in America is keeping good jobs away (where people expect benefits, naturally). A government solution would be more efficient thus and better for everyone. A plan intended to cover everyone would not need complicated formulas and armies of actuaries to determine who to screw over. We might even have better infant mortality rates than Cuba.

Re:Which is why insurance needs heavy regulation (1)

MPAB (1074440) | more than 7 years ago | (#18392979)

I agree. Diseases can be a devastating burden which impede financial-social-laboral recovery (which, in turn, impede health recovery thus closing the circle). On the other hand, we're the only animal species that care about each other's health instead of leaving him to die. A socialized system would treat the nation's health expense as a whole and act accordingly.

Still, a socialized system has big defects:

-The health policy can get heavily burdened by poltical affairs - Here in Spain the leftist government is going specifically after McDonald's and Burger King citing health, but not failing to mention ther fact they're iconic enterprises from the USA. In the case of a nazi-type government (there goes Godwin's Law) they could even force eugenics in a way that clashes with ethics.

-If it turns to "all free" like here, the hospitals get full of healthy people with a cold, or ppl looking for a random day leave. The important cases get swarmed and the doctors get burnout. The solution would be to pay a very small sum (perhaps a dollar) just to be seen by the doc, but then again it would be "putting away the poor and miserable".

-"Medical tourism" consists of people coming from all over Europe to have their expensive ailments (heart surgery, etc) taken care of here. Also it becomes a calling for illegal migrants who will be far better off not working and undocumented here than working in their countries.

Cuba is more than socialized medicine: it's FORCED medicine. I've been there as a doctor. The lifespan and infant mortality come from the point that no one is able to escape the doctor the same way nobody's able to escape the government. The doctor is given a house in a given neighborhood and he must visit the neighbours regardless of them calling him or not. In Europe or the US (not mentioning countries where people still live in huts) the people are free not to go to the doctor or to take alternative medicine and stuff. It's been calculated that in the western world the average diabetic has had high glucose levels for at least 8 years before seeking assistance, and the average hypertense has been like that for ten years before going to the doctor. In Cuba that just can't happen because the "compañero doctor" will find out ... the same way they find out if you don't agree with Castro.

Re:How would this affect insurance? (5, Informative)

ubernostrum (219442) | more than 7 years ago | (#18392489)

Would one be obliged to inform insurance companies of this "pre-existing" condition. If so, it seems one would probably be better off not knowing.

I used to work at a health-insurance company (customer service and claims processing, it was my first job out of college), so I feel like I should point out that "pre-existing condition" is (in the US, at least) a phrase with a very precise legal definition, and doesn't include a lot of things people commonly think it does.

If you seek out insurance as a private individual, then the prospective insurer can choose not to provide you with any coverage for pretty much any reason they like, and many will if you have an expensive ongoing condition, but group health plans offered through an employer are not permitted to deny coverage -- if insurance is offered to one employee in a given class (usually full-time employees), it must be offered to all employees in that class.

Once you have coverage, there are strict laws regarding what claims may be denied due to pre-existing conditions, and when:

  • Once your coverage starts with an insurer, they can investigate claims to determine whether they are related to a pre-existing condition. In order to deny payment of a claim for a pre-existing condition, that specific condition must have been actively treated at some point during the six months immediately prior to the beginning of your coverage. "Active treatment" doesn't mean "diagnosed" or "mentioned", it means that a licensed medical practictioner was carrying out medical procedures and/or prescribing medication specifically for the treatment of that condition[1]. Treatment which took place more than six months prior to the beginning of coverage cannot be used as evidence of a pre-existing condition.
  • After twelve months with an insurer (or eighteen months if you're on a group plan and were a "late enrolee"), the insurer is no longer permitted to deny any claims due to pre-existing conditions.
  • If, prior to the beginning of your coverage with your current insurer, you had coverage with another insurer, and there was no period between the two in which you were uninsured or that period was less than 63 days long, then the time in which your new insurer can deny claims for pre-existing conditions is reduced by the length of time you had continuous coverage through your previous insurer. If your prior coverage was longer than 12 or 18 months (depending on your time of enrollment), then your new insurer is not permitted to deny claims for pre-existing conditions. To facilitate this, your previous insurer is required by law to provide you with a "certificate of creditable coverage" indicating the duration of your coverage with them.
  • Claims related to pregnancy can never be denied due to a pre-existing condition, regardless of circumstances.

Additionally, many insurers won't bother investigating on claims where common sense says it wasn't a pre-existing condition; so, for example, if you accidentally slice your thumb while chopping onions for dinner, the insurer will probably go ahead and pay the claim. Any sort of sudden/acute onset condition or accidental illness/injury will usually get this treatment, because investigating pre-existing conditions is expensive and time-consuming, and it doesn't make any sense to waste time and money when you know how it'll turn out anyway.

One of the biggest causes of misunderstanding is the insurer's investigation of a condition -- the claim will be put on hold, and the doctor or facility listed on the claim will be asked for records of treatment of that condition during the six-month "lookback" period, as well as information about any other doctors or facilities who may have treated the condition. If the insurer receives no response to those requests, then the insurer is permitted to initially deny the claim (any time there's insufficient information to determine benefits, an insurer can deny the claim until the necessary information is supplied to them -- for example, if you're injured in an auto accident, your health insurer will usually deny your claims until they know whether anyone's car insurance assumed issued a payment). When this happens, people almost always read the words "pre-existing" and ignore everything else, including the often large, bold-faced notice that the claim will be reconsidered on receipt of medical records related to the condition.

[1] Insurance companies can figure this out pretty effectively, because doctors and hospitals in the US all use a standardized coding system for diagnoses (ICD-9 when I worked in the industry, but ICD-10 should be in use now); this reduces medical diagnoses to numeric codes. There's a similar standard coding system for medical procedures (actually systems -- HCPCS, CPT and ICD all have procedural coding stuff) and a physician's standard claim submission form itemizes procedures and ties them to their accompanying conditions by pairing procedure codes and diagnosis codes. It always amuses me when I see someone online handing out advice about how to "hide" a pre-existing condition, because you basically can't do it -- there are too many places where the reporting is standardized.

Loophole (1)

ArsenneLupin (766289) | more than 7 years ago | (#18392625)

In order to deny payment of a claim for a pre-existing condition, that specific condition must have been actively treated at some point during the six months immediately prior to the beginning of your coverage. "Active treatment" doesn't mean "diagnosed" or "mentioned", it means that a licensed medical practictioner was carrying out medical procedures and/or prescribing medication specifically for the treatment of that condition[1].
Interesting. Doesn't this open the loophole that if somebody is uninsured and diagnosed with a condition (cancer, AIDS, ...) he tells his doctor to hold off treatment, subscribes an insurance, and then goes back to his doctor to start treatment. Sounds like a rather obvious loophole.


Or should the above read: ...actively treated at some point during the period starting six months immediately prior to the beginning of your coverage until 12 or 18 month minus creditable coverage after beginning of your coverage ?


And what about conditions which may have "complications". Say, you have a chronic but mild infection (which is being treated), and you subscribe an insurance plan. The insurance will obviously deny you payment for the treatment of that infection. Now, what if the infection suddenly enters an acute phase and becomes worse and more expensive? Can the insurer still deny you payment, or is the "complication" considered to be a new condition?

Dude. Get a life agent license (1)

Travoltus (110240) | more than 7 years ago | (#18392957)

You just passed with flying colors.

I have that along with my P&C and my Series 7 & 63. A life agent license will make you moderately rich. Add P&C to that and you're drowning in dough, and every financial employer wants you. Add a Series 6 or 7 to that and palm branches will be laid at your feet as you walk down the street (though you need a sponsor for the 7 and probably for the 6).

If you haven't done it yet, do it now before the out of work biotech and IT people see this and bum rush the industry (and drive competition for clients through the roof).

Simple solution (0)

Anonymous Coward | more than 7 years ago | (#18392225)

She should buy a shotgun and put it away. Then she should live her life to the fullest and not bother to save for retirement. When the disease strikes her (the article said it would hit her in middle age) she should blow her brains out and avoid the years of suffering that will inevitably lead up to her painful death.

Some may say this is a harsh course of action, but I defy anyone to come up with a better solution to her predicament.

Re:Simple solution (1, Insightful)

Anonymous Coward | more than 7 years ago | (#18392477)

From AC to AC, a person I love deeply just found out that she has a degenerative disease.She can choose to fight an uphill and expensive battle for her life with the small hope that she will squeeze more years in this planet, or she can just take the course of action that you described. She is a real person. Once I got past the dehumanizing anonymity of some random news and saw this happening to somebody I care about, I know that its not so simple. Most people want to live. And most people want their friends and family to live. I'm glad she chose to fight.

Re:Simple solution (0)

Anonymous Coward | more than 7 years ago | (#18392679)

We all care for our loved ones. We want to be near them. We want to spend time with them. We want them to be happy. We certainly don't wish them any harm.

Why then are we so quick to accept, even encourage, their suffering in cases like this? Don't delude yourself. Suffering is exactly what life becomes for people with diseases like these. Although it may be possible with (often unpleasant) treatments to prolong the lives of people like this, it often simply isn't worth it. There is no sense in prolonging misery or suffering. In fact, it's cruel. Again, why would we encourage such a thing? I believe it is out of selfishness. We don't want to let go of those we love, even if that's the best thing for them in some cases. Thus we ask them to endure, to suffer, and to hurt all so that we can put off the pain of having to say good-bye.

Sometimes we need to put aside the Pollyanna optimism and admit that some things are hopeless. We need to admit that some parts of life are better missed than lived. We need to put away our selfishness and let these unfortunate souls find peace, rather than compelling them to suffer even more for our sake.

Sometimes death is better than life.

This is a major issue... (3, Interesting)

zappepcs (820751) | more than 7 years ago | (#18392229)

I just read a book recently called 'The Language Of God' by Francis S. Collins. He played no small part in mapping the human genome, and he discusses some of the implications of knowing that you are, or are not susceptible to particular maladies. His main concern was one of security as once you know that you are very susceptible to breast cancer the insurance companies can back out on you, or otherwise make the whole ordeal very nasty when/if it happens that you get the cancer.

The problem of not getting medical care because you knew you would get the disease is a real BIG problem. How can medical insurance work if there is no unpredictability in when people get sick? I think the basic conclusion that can be drawn from this and what Mr. Collins says: This is a good thing and can lead to much healthier people in general, but with the current system, it presents a whole plethora of opportunities for abuse and misconduct. So, it won't be a good thing until the current medical systems change to something more friendly to gene related therapies, treatment, and detection of disease/maladies.

Re:This is a major issue... (1)

linguizic (806996) | more than 7 years ago | (#18392311)

I don't know much about the Canadian healthcare system, or any other socialized healthcare system, but from what I do understand, this shouldn't be a problem for them. I think in the long run this will lead to a collapse in the health insurance business and the USA will be forced to either go the nationalized or the individualized route. I hope to God that we don't go the individualized route.

Re:This is a major issue... (1)

zappepcs (820751) | more than 7 years ago | (#18392365)

Well, if Science Fiction is any predictor of what the future holds, Star Trek shows the world in a much better situation with healthcare for all, the elimination of the debt economy, and a basic change for betterment of both individuals and society.

Current copyright, patent, and medical issues could conceivably turn out to be like Star Trek predicted. IMO, that is worth a lot of very deep thought!

Re:This is a major issue... (1)

linguizic (806996) | more than 7 years ago | (#18392403)

I think one of the things that Star Trek based it's vision of the future was teh idea that the more educated people are the more they will be willing to cooperate. I'm not sure if that's the case, I mean look at the resistance the social sciences are putting up to actually using real honest-to-god biological theory to explain human behavior. These are highly educated people who have some sort of agenda that gets in the way of real breakthroughs being made in understanding human beings. And I think when it comes down to it, an increase in cooperation is the general trend throughout history, but we still have some major hurdles to get over before can reach the eudaimonic state portrayed in Star Trek.

Re:This is a major issue... (3, Insightful)

zappepcs (820751) | more than 7 years ago | (#18392445)

I didn't want to mention it to avoid seeming a troll, but there is one other VERY important thing that Star Trek predicts: The removal of religion from society. Even though characters were spiritual, and expressed morals that are mostly in alignment with religion in general, there was AFAIK no religion that Federation citizens practiced.

Without religion, half if not more IMO, of the 'secret agendas' that people have will simply disappear.

Just a thought

Re:This is a major issue... (1)

mrchaotica (681592) | more than 7 years ago | (#18392505)

Not to mention that the conflict caused by the religion often formed the plot of the episode (and in the case of the Bajorans, defined an entire race)!

Re:This is a major issue... (1)

Virtual_Raider (52165) | more than 7 years ago | (#18392557)

Dude, you have it backwards. Its people that have a priori agendas that turn religion into the disgusting mess that it gets turned into occasionally. Yes, occasionally, religion is not always Teh Eevol as its neither always the one-shop-salvation it aims to be. But religion is a very tasty morsel, a very convenient prepackaged delivery medium for ideas and that is the reason it is poisoned to infect "the people" with nasty notion. The general idea of religion is not so bad if you look at it: basically be in harmony with yourself, with your neighbor and with the universe at large. They happen to give the universe a name and grant it the title of God, fine let them. But religion is not bad in itself, its the people that run the show that often make it deviate from its raison d'être. to manipulate the masses for their own ends. The fact that religious people also tend to be the type of persons that prefer prepackaged solutions over doing their own thinking doesn't help either.

Re:This is a major issue... (0)

Anonymous Coward | more than 7 years ago | (#18392955)

Dude, you have it backwards.

But religion is not bad in itself, its the people that run the show that often make it deviate from its raison d'être. to manipulate the masses for their own ends.
Dude, I think you have something backwards yourself.. the raison d'être of most religions already is to manipulate the masses.

Re:This is a major issue... (1)

illuminatedwax (537131) | more than 7 years ago | (#18392833)

Awesome, offtopic AND flamebait.

Re:This is a major issue... (2, Insightful)

Rakishi (759894) | more than 7 years ago | (#18392617)

How can medical insurance work if there is no unpredictability in when people get sick?

Very few genetic factors are certain to cause some disease, most just increase the odds. This is actually one of the odder ones given just how exactly they can link death time to repeats of the sequence (ie: have x repeats you will die at age y plus minus a year).

Yet that is interesting in itself, life insurance will cost significantly more but there is no reason for companies to not give it at all. At the same time you won't need to put as much into retirement so it probably evens out. Health insurance is more interesting, it wouldn't matter if you're years away from expected death but close to it you'll have problems. Still it's not much different from a lot of other disease that are almost surely fatal (certain cancers, AIDS back in the day, etc.). You just know when you'll get it. Some form of long term insurance were the company is betting on a cure might work.

Hey, a crystal ball! (3, Insightful)

ViX44 (893232) | more than 7 years ago | (#18392271)

I find it amusing that you can put a dusty old woman in a jangling dress with a crystal ball, a little golden pyramid, and a chart of constellations on the wall, and people will give up their money to "have their fortune told," but offer to do it for real and they step back.

It's a cultural problem that people aren't brought up to take control of their lives to the extent they can, and leave the remainder to fate, under the name of whatever diety you think looks coolest on your lunch box.

Risking the chance of sounding like a Tyler Durden or John "Jigsaw" Kramer, a fear of knowing one's fate is a true cowardise that has troubled humanity for ages. Faced with one's mortality, humans will avert their eyes in ignorance, fall to their knees in prayer, or just bawl like infants far more frequently than they will take a breath, think of a plan to make use of their life, and strive toward a goal.

This makes sense, when you remember that a large amount of the population, told they have 1% of their lifetime remaining, will look back at the past 99% being sunk into wastetimes like watching American Idol, arguing with potential life-mates over use of hand towels, and choosing for or against the strinne-green sofa. You only notice the time you've wasted when you look at the clock.

Re:Hey, a crystal ball! (1)

Rakishi (759894) | more than 7 years ago | (#18392419)

Ah, but what isn't wasted time? In the end none of it matters, when the universe becomes a frozen wasteland in billions upon billions years the only effect you may have is where a infinitesimal amount of that frozen junk sits.

By some metrics having enjoyed life, whatever enjoyment is to you, is the best way to waste it.

Re:Hey, a crystal ball! (1)

KDR_11k (778916) | more than 7 years ago | (#18392451)

To put it like Terry Pratchett: People don't ask a witch for their fortune because a witch tells them what they asked for, not what they want to hear.

Without Treatment, Why Know? (1)

marshac (580242) | more than 7 years ago | (#18392281)

Without viable treatment options for many genetic disorders, why subject yourself to such a test in the first place? What do you gain in knowing your possible fate?

Re:Without Treatment, Why Know? (1, Insightful)

linguizic (806996) | more than 7 years ago | (#18392329)

So you know whether or not to bother with a 401k.

Re:Without Treatment, Why Know? (0)

Anonymous Coward | more than 7 years ago | (#18392395)

In a case of a horrible inescapable prognosis, devoting one's life to changing that fact, with some significant amount of time would seem pretty useful. While med school might be out, fundraising for fundemental research isn't.

Re:Without Treatment, Why Know? (0)

Anonymous Coward | more than 7 years ago | (#18392519)

Exactly. Perhaps there it is the case that there's no treatment yet. You can become an advocate for your particular cause, like Augusto and Michaela Odone [wikipedia.org] , whose son Lorenzo was diagnosed with adrenoleukodystrophy, or Harvard stem cell researcher Douglas Melton [go.com] , who redirected the focus of his laboratory after his son was diagnosed with diabetes. I think we will find that once personalized medicine makes advocacy for biomedical research a selfish act, it will become much more widespread and effective. As the nytimes article demonstrates, you don't need to be a scientist, celebrity, or wealthy donor to be an effective advocate for something.

Re:Without Treatment, Why Know? (1)

knewter (62953) | more than 7 years ago | (#18392559)

You gain knowledge itself. There are those of us who revere that. I personally revere knowledge, even though I KNOW that it's not absolutely good and that this revered status is unwarranted. Still, I'd rather know than not, about everything.

Re:Without Treatment, Why Know? (1)

marshac (580242) | more than 7 years ago | (#18392735)

Hypothetical situation- Your father does not want to know if he is a carrier of some sex-linked nasty untreatable illness, although you want to know if you carry it. If you're tested and found to carry the gene, your father therefore must carry the gene. Does your right to know about your own genes trump someone else's right to not know about theirs? The response that "I just won't tell them" is probably a bit disingenuous...

I'm not sure there is a right or wrong response, but this is probably one of the many ethical issues we must all ask ourselves...

Re:Without Treatment, Why Know? (1)

knewter (62953) | more than 7 years ago | (#18392927)

I would simply tell my father. I unambiguously shoot down any right to ignorance. The ignorance of others often causes me great trouble.

If he takes issue with me for informing him, fine. That's between us, and I would accept any consequences it might have. I think most people in the world are far too pansy about feelings and far too weak about fact.

How about.. (1)

njdube (965445) | more than 7 years ago | (#18392873)

... hope and the motivation to do something. If Bill Gates, Steve Jobs or anyone else with money or power happen to get something without any "viable treatment", they might (oh I don't know) donate fuck loads of money, resources and what ever time they have left to find a cure. Just because there's no "viable treatment" NOW doesn't meant there wont be. If I knew I had something where there was no treatment. I would save as much money as I can and maybe wait for a cure (that's if I'm still alive) and use the saved up money on that. I might also write a will to have my body and money donated to science. You know, maybe help others out when I'm gone. The word here being HOPE! Most people don't know when they're going to die, but if you did you could find a way to use it to your advantage or stop it from happening. But if you want to stick your head between your legs and think of your self, you can do that. ;-) Point being, fear of anything is a strong motivator to do something about it. With out fear, hope, motivation or any thing else that makes us human, we would all just die sitting on our sofa's wondering what's on the next American Idol while not doing anything to advance the human race. Choices we make now have ripple affects even after we're dead. Just something to think about.

Re:Without Treatment, Why Know? (1)

posterlogo (943853) | more than 7 years ago | (#18392933)

Don't have kids. That's why. To do so would be purely selfish.

Why is this YRO? (0)

Anonymous Coward | more than 7 years ago | (#18392301)

Can someone explain this to me?

Re:Why is this YRO? (0)

Anonymous Coward | more than 7 years ago | (#18392323)

It's not, "Your rights online!" It's, "Your rights, Online"

"Narrowing Discrimination Down to a Science" (2, Insightful)

PO1FL (1074923) | more than 7 years ago | (#18392349)

Does anyone else see the phenomal potential for misuse of technologies like this? Its not just insurance companies. What about college admissions tests? Driver licensing? Job applications? Maybe I've just seen Gattaca one too many times...

Re:"Narrowing Discrimination Down to a Science" (0)

Anonymous Coward | more than 7 years ago | (#18392697)

Yeah absolutely. That's the first thing I thought of when I read the description.

I chose to not be tested (0)

Anonymous Coward | more than 7 years ago | (#18392357)

My sister has a genetic condition which is quite rare and it basically causes arthritis. She has to exercise daily in order to ensure that her joints don't seize up.

She suggested that I should get tested for it, but I chose not to, because the condition usually hits earlier in life, and I have not seen any symptoms so it is quite unlikely that I have it.

Hope is coming (1)

stox (131684) | more than 7 years ago | (#18392369)

Development of treatment for diseases such as this are on the horizon. Already, enormous progress is being made in the treatment of many related diseases using monoclonal antibodies. I can only hope that this disease is one of them. As it is, Multiple Sclerosis is finally being treated with remarkable success, Tysabri. Alzheimer's may soon follow. With enough research, Huntington's may be next.

Is it, though? (1)

Gazzonyx (982402) | more than 7 years ago | (#18392441)

I don't have any numbers to quote off the top of my head, and I can't look them up right now, (I'm supposed to be writing an assembly program for class, but such is the folly of SSH'ing from home to our solaris box at school!) but I have heard that the problem is that if we are able to cure terminal diseases (I think the article was on AIDS) we get a continually growing population. Eventually everyone will die, but if the average age that people die at goes up signifigantly, we have a big problem; old people, not being able to contribute to the labor force, and lots of them. Then we ultimately have food shortages, and people die of starvation.

I have heard that the planet supports about a billion people well, and after that resources become a problem. We're past 4 billion and still climbing. Should we cure terminal diseases and have a large population of people who aren't able to give any labor back... well, I think you get the image. Perhaps curing diseases that affect us in later years, after we've lived a full life, isn't in the best interest of our children who will have to support us.

Before you all flame, let it be known that I come from a family with a VERY high rate of cancer, and in later years it's very possible for it to be a bullet with my name written on it. Alright, flame on.

Jerome Morrow, is that you? (1)

thrawn_aj (1073100) | more than 7 years ago | (#18392401)

/obligatory GATTACCA reference =D

What? (1)

bmo (77928) | more than 7 years ago | (#18392423)

"The New York Times is running a story on young people who are choosing to get genetic tests for conditions like Huntington's Disease that develop relatively late in life."

What do you mean "relatively late"? 37 or 40 is pretty damned early if you ask me.

--
BMO

Re:What? (1)

Bwian_of_Nazareth (827437) | more than 7 years ago | (#18392615)

What do you mean "relatively late"? 37 or 40 is pretty damned early if you ask me.

Maybe that is why it says "relatively"? Relatively to making a lot of decisions... What job will I do? Will I have children? Where will I live? What kind of person will I be? 40 is by no means "late" in life, but it might be too late to change some things in your life. That is why it might be "relatively" late.

Re:What? (2, Insightful)

Kufat (563166) | more than 7 years ago | (#18392643)

Relatively as compared to Down syndrome, cystic fibrosis, Tay-Sachs, and other genetic conditions which manifest in the first few years of life, if not at birth.

Right mindset (2, Insightful)

ms1234 (211056) | more than 7 years ago | (#18392437)

As someone who has both high bloodpressure and hear attacks that keep killing family males at a young age (correctable with surgery) running in the family, I'm fairly certain that I will too have the same problems at some point in life (high bloodpressure already). Granted, both of these can be treated unlike any terminal disease, but 10-15 years ago open heart surgery was not a piece of cake even though the success rate is higher now but still it is something that has always been in the back of my head and I've learned to live with it. At some point I just decided that I'm going to live life as I would as any other normal person until such a time that I either drop dead someday or until I die of old age.

Medicine as a science is evolving sometimes fast, sometimes slow and perhaps there is someday a treatment for terminal disease x or y that we do not have today.

Genetics and Eugenics (2, Insightful)

nephridium (928664) | more than 7 years ago | (#18392447)

I agree. I also find it rather strange that things like these aren't really out there in public discussion. Very soon our scientists will have the means to modify and replace "unwanted" genes. While hardcore religous types may or may not have a point when they say don't mess with our genes/embryos or the creation (though it's arguable that we have done the latter ever since we used our brains to survive), it is not being discussed "what" ethical points these may be. Ethics are there for a reason, but their rules need to be put through rational analysis to determine whether they hold up and have a function or are simply outdated. What needs to be considered as well is that other countries (e.g. Korea or China) don't see the same ethical problems arising when "messing with the creation". So they'll go ahead with research no matter what unless a universal consensus not based on religion is found.

So we need to ask ourselves a few questions. What are the rational implications to eugenics? Is it ok to "just let it happen", just let the scientists do their work in the name of improving our gene pool by finding techniques to eliminate "undesireble genes? WHAT are undesirable genes? Will it lead to a society of morally inept people? Plastic surgery, once decried as weakness of character and senseless vanity of rich people is now becoming main stream in many circles of the high society - who says that this will not happen with 'cosmetic genetics', and furthermore will this not lead to more imbalance and cause strong resentment between those who can afford it and those who can't?

sudden bouts of activism (0)

Anonymous Coward | more than 7 years ago | (#18392503)

Spread awareness about your condition, donate hundreds of millions of dollars to research, change your major to medicine...

What are the implications of this... (1)

Ltar (1010889) | more than 7 years ago | (#18392525)

...in the health insurance industry? Do I see GATTACA [imdb.com] around the corner?

"In the not-too distant future"

Re:What are the implications of this... (1)

Ltar (1010889) | more than 7 years ago | (#18392561)

...For the record, when I began writing my first comment, no-one had referenced GATTACA yet.

Re:What are the implications of this... (1)

GrievousMistake (880829) | more than 7 years ago | (#18392987)

By analyzing several /.'ers DNA samples, I determined that several GATTACA references would be made within an hour of this thread being posted.

We should have thought about it a long time ago. (1)

drolli (522659) | more than 7 years ago | (#18392551)

We should have thought about that back in the early ninties. Some people were aware of it at that time; i remember that becaus i did some literature research (in 1992) for writing an article in our schools pupils magazine about genetic technology. Even at that time i found it obvious that the primary danger is not our ability to modify the gonom but to read it out. I been scared since that time about the careless discuccion in the public. It is true, we have to develop an ethical code on that. For example, insurances should not be allowed to make mandatory genetical tests; however perosns who did genetical tests should share the results with the insurances. That's very simple. If I know that I am going to have cancer and I am making an insurance, it is no risk any more. On the other hand, one should discuss that the increased "genetically inherited" risk is taken over by the state. So I think insurances should mandatory offer an plan for anybody and openly caclulate the fraction of that plan attributed to genetic disposition, which i suggest should be compensated for from either tax money or another (mandatory) insurance (macroeconolically both possibilitis are different tastes of the same thing!).

In that way, everybody could choose:
* not know your risk and be insured at an fair rate
* know your risk and be insured at either a higher or lower rate, in the first case the state would pay the difference

The insurances
* Could use their conventional mathematics a the same fractions of uncertainity
* Could try to lower the overall costs by taking preventive measures.

Avoid Alzheimer's... (4, Interesting)

quokkapox (847798) | more than 7 years ago | (#18392677)

Well, whatever you do, don't get Alzheimer's disease. It sucks.

My grandmother just turned 94 and has advanced Alzheimer's disease. She can barely walk anymore. I devote a few hours of my life every single day to caregiving. If you've never known someone like this, you really have no idea what's involved. Yeah, we could put her in a home. We could watch her die sooner that way, wearing diapers and ceaselessly, hopelessly calling out for someone to please take her home. As it is now, she wears diapers, but at least we always change them. In nursing homes, they don't.

Have you ever had someone you know and love, who helped raise you and even changed *your* diapers and then helped teach you how to count and how to read and how to do puzzles and math and typing and how to play games, who taught you the names of the plants that grow out in the back yard? And now she can smile and say "Hello", and tell you to get the hell out because she don't know who you are a moment later?

That's Alzheimer's. You can be helping to manage her most intimate financial affairs completely honestly, you can be doing her laundry and getting her medicine and bringing her groceries and cooking her meals and washing her dishes and vacuuming her floors and helping her get to the doctor and even wiping her ass, when she cannot do it herself anymore, and yet she'll still tell you she loves you one night, and the next morning she wants you to go away, go to hell, or just please, please take her home. Because she doesn't know what home means anymore. She's already at home, and she doesn't know who you are anymore.

She knows what she knew in 1920 or 1930 sometimes, funny stories she can still tell sometimes, but she mixes up everyone's names; she doesn't know who is who anymore. She used to speak three languages, English, German, and French. But now she often speaks gibberish, a weird combination of whatever words she still can recall. She can't always understand simple sentences. She's like a kid who cannot learn.

Alzheimer's sucks; nursing homes suck. Go visit one someday if you doubt me. My grandmother's genes and her circumstances allowed her to outlive two of her children. She never got cancer, but that's what killed her elder son at 50. She had a heart attack thirty years ago, but she didn't die of heart disease. That's what killed her elder daughter at 60. Yet my grandmother lives on, as her mind slowly disintegrates.

She still likes to watch children playing, or to meet a drooling baby, maybe a child of someone who helps care for her, brought over to visit. She still likes to pet her cats and smile and watch them roll on the floor with catnip at her feet, she still can interface with her two grandchildren, she still has a sense of humor that we all can understand and sometimes laugh about together.

She doesn't know what year it is or what day it is, and sometimes she can't remember how to properly hold a spoon (or she'll try drinking from it like a straw). But she especially likes bananas and squash and sweet potatoes and chocolate chip cookies. I know this because I'm there sometimes to remind her to take another bite. She says "This is good, thank you!"

And sometimes when you help lift her into bed at night, she'll tell you she loves you. I guess that helps make it all worthwhile.

Anyway, this is what will happen to you if you don't die of anything else or get hit by a bus before your brain starts to degrade. I suppose it hasn't been all bad, I have learned a lot caring for my grandmother. But she is no longer able to offer her opinion.

Re:Avoid Alzheimer's... (0)

Anonymous Coward | more than 7 years ago | (#18392723)

Maybe our efforts at keeping people alive, no matter what the quality of life are misguided. 94 years is a good run.

Re:Avoid Alzheimer's... (2, Interesting)

quokkapox (847798) | more than 7 years ago | (#18392931)

Maybe our efforts at keeping people alive, no matter what the quality of life are misguided. 94 years is a good run.

You know, I have been thinking about this for six years now, and I really haven't come to a conclusion. Maybe I'm too young.

Define "quality of life". Define "health". My grandmother enjoys quite good health, her only complaint is occasional constipation and the inevitable aches and pains of being 94 which she cannot even express anymore. She has arthritis, she had an ingrown toenail. But she doesn't complain about being in pain very often. Sometimes she says her head hurts and I'm not sure if she means she has a headache, or that she cannot think or express her thoughts.

As far as quality of life is concerned, she's beyond the point of being able to express her opinion. She doesn't say "I wish I was dead". But I don't think she'd be capable of saying that, even if that is what she felt. She's in a kind of limbo.

As we continue to develop cures for fatal diseases and make chronic illnesses more manageable, our society will be forced to confront the troubling issues raised in this thread, including euthanasia and assisted suicide.

I would not ever consider euthanasia (murder) and I would be reluctant to assist someone with suicide. But if she had told me ten years ago, "If I ever get Alzheimer's, shoot me!", well, what the fuck are you supposed to do in that case? People say things like that to their relatives all the time.

Who am I to deny helping her achieve the enjoyment of seeing the sun rise yet again tomorrow morning, even if that's one of the few things that makes her smile that day? She is happy when she wakes up in the morning, she is often happy when she curls up in bed at night, she sometimes smiles during the day in response to various stimuli.

Maybe her life now is better than most of the rest of us can claim.

Darwinistic application (4, Interesting)

Z00L00K (682162) | more than 7 years ago | (#18392687)

Using genetic analysis to cull bad genes may be the way to go for people if humankind shall continue development. The point is that today we are able to defeat most illnesses that earlier were fatal and therefore genes that are bad will now be able to propagate.

So even if there are moral considerations regarding culling bad genes with abortion there has to be considerations with impact for humankind as a whole or the human race will degenerate in the end. This doesn't mean that any gene defect that is detected should be cause for termination, but there are known defects that can be detected early and are causing conditions that are either terminal early in life or causing an individual to rely on others for survival.

Of course - there are also the dualistic genes where a gene may be a survival feature as well as a limitation. One such gene is protection against malaria if it's present in one chromosome but if it's present in both chromosomes it's instead a fatal blood disease. Anyway the real culprit here is malaria, so eradication of that disease should be a more useful goal.

The interesting thing with genes like the gene for Huntington's Disease and some forms of cancer is the fact that they are triggered late in life. This means that they aren't culled by the usual darwinistic rules and therefore has to be caught by other methods.

And genetic engineering of humans are actually possible today or in the near future - the worries about "superhumans" and things like that are usually exaggerated. Of course - the crafted being will be "superhuman" in the way that it lacks the bad genes that were cut out. Adding "super"-genes to make a human more powerful or get features that aren't human-like etc. is actually a lot more complicated and risky.

Knowledge is everything (1)

HW_Hack (1031622) | more than 7 years ago | (#18392705)

While ignorance in some areas of life is bliss --- its not so when it comes to your life and how you live it.

On a routine physical at age 48 I learned I had a rare blood cancer ( rate is about 3 - 5 people per million) and had I gone much longer without treatment I'd either be dead now or typing this in some strange way after surviving a massive stroke. There is no known cure for my disease.

Yeah learning about a genetic condition or cancer - etc. is a real buzz-kill --- but it allows you to start making choices for your life for the better and living your life more focused on whats important to you and your family.

Remember - nobody gets out of here alive :-/

Something significant we can do (0)

Anonymous Coward | more than 7 years ago | (#18392821)

In fact, there IS something significant this community (and others) can do: help with the folding@home [stanford.edu] project. All of that spare hardware laying around could speed finding cures. I'm going to resurrect some machines just for the cause.

what's the point? (0)

Anonymous Coward | more than 7 years ago | (#18392939)

I was born with agenesis corpus callosum, rare congenital disorder. It was dfiagnosed when I was 32. I have master's degree in cs. I live normal life. What's the point in this story? Someone is ill and they study his/her life. They can pay me 100000000000000000000usd ja study my life as well.
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