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Stem Cell Tourist Dies From Treatment In Thailand

timothy posted more than 4 years ago | from the pays-your-money-takes-your-chances dept.

Medicine 451

An anonymous reader writes "Last week, news that Costa Rica was shutting down a large stem cell clinic sparked a debate here on Slashdot about whether patients should be allowed to take the risks that come with untested treatments. Now comes news of what can happen when patients go looking for a shortcut. A patient suffering from an autoimmune disease that was destroying her kidneys went to a Bangkok clinic, where doctors injected her own adult stem cells into her kidneys. Now she's dead, and a postmortem revealed that the sites of injection had weird growths — 'tangled mixtures of blood vessels and bone marrow cells.' Researchers say the treatment almost certainly killed her."

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451 comments

Stem Cells Do Not Work That Way (0)

Anonymous Coward | more than 4 years ago | (#32621858)

Weird science!

Could have been worse (2, Funny)

Vinegar Joe (998110) | more than 4 years ago | (#32621862)

She could have ended up like Kwai Chang Caine.

This will be interesting.... (-1)

allaunjsilverfox2 (882195) | more than 4 years ago | (#32621870)

Since the Geneva convention has specific rules against testing on human subjects. True it is meant for forced testing but this seems like it might still apply.

Re:This will be interesting.... (4, Informative)

WarJolt (990309) | more than 4 years ago | (#32621906)

As long as an individual is adequately informed of the risks that individual has a right to take that risk. The Geneva convention is about the state using humans as test subjects. That is a whole different can of worms.

Re:This will be interesting.... (2, Insightful)

DigiShaman (671371) | more than 4 years ago | (#32621976)

Agreed. But the least you could do is review the accreditation of the people involved in the medical community. Not something that sounds like a corner tattoo parlor shop.

Re:This will be interesting.... (5, Interesting)

PopeRatzo (965947) | more than 4 years ago | (#32622096)

Maybe you don't understand how desperate a person can get when they're faced with something "incurable". Back in the 90's, I had lymphoma and thought my goose was cooked. I was lucky enough to be part of a drug trial for a medicine that is routinely used to treat the disease. Of course, it was an excellent university hospital that was doing the trial, and they gave me the very best care, not some third-world biopirate lab. I guess it was caught early enough and I was very very lucky because it's been 13 years now without a recurrence and now I'm healthy as Secretariat on his best day. I've come to believe that it wasn't as dire as I thought it was when I was diagnosed, but I was sure I was a goner at the time. Once the doc said "cancer" I couldn't hear a word and just saw my own death. The chemo was a fucking nightmare and it's taken a decade of tai chi to undo some of the neurotoxicity. Looking back I sort of sleepwalked through the ordeal, but if I'd been faced with early death or some crazy bio-soup from Thailand, I'm not sure I wouldn't roll the dice, even against big odds. I remember "helpful" family members talking to me about faith healers and shit and thank god it didn't come to me making that kind of decision.

Re:This will be interesting.... (0, Flamebait)

Cheezymadman (1083175) | more than 4 years ago | (#32622148)

What's interesting is how you extol the virtues of tai chi as a form of detox, and then go on to talk about "crazy biopirates" in the same breath.

Re:This will be interesting.... (0)

Anonymous Coward | more than 4 years ago | (#32622342)

Those were different breaths, JACKASS!

Re:This will be interesting.... (0)

Anonymous Coward | more than 4 years ago | (#32622272)

Bumrungrad International is managed by a team of experienced hospital administrators from the USA, Australia, Singapore, Thailand, and the UK [2]. The hospital’s medical Chairman is board certified in the United Kingdom. Its Group Medical Director is board certified in the USA. [1 [wikipedia.org] ]

It's also internationally accredited. Why is it a corner tattoo parlor shop again?

Re:This will be interesting.... (3, Interesting)

vux984 (928602) | more than 4 years ago | (#32621990)

As long as an individual is adequately informed of the risks that individual has a right to take that risk.

That's a meaningless platitude when it comes to something like this.

Many individuals with these diseases or conditions considering these treatments have no sense of risk left at all. They will do *anything* whether it has the slightest basis in science, or relies entirely on magic, astrology, mysticism, the power of crystals, aliens, jesus, snake oil... anything.

It is morally wrong to exploit someone in that position financially (or otherwise). Claiming that you disclosed the risks and they signed the waiver doesn't make it ok. In a sense they do have a gun pointed at their head... whats a raft of fine print and a 2nd mortgage when your life is on the line.

And they're promising the solution* to all your problems!!

(in 2pt font: * solution not guaranteed to solve your problems, and may actually make them worse, but there's a nother treatment we can try that will solve* that, but its a bit riskier and more expensive...)

The Geneva convention is about the state using humans as test subjects. That is a whole different can of worms.

Agreed.

Re:This will be interesting.... (4, Insightful)

clang_jangle (975789) | more than 4 years ago | (#32622108)

You appear to be advocating "protecting terminally ill patients from themselves". Seeing as how they are already terminally ill that seems just a bit silly. Who better to experiment on than a terminally patient with nothing to lose who is willing to give it a shot?

Our health care choices are already far too restricted -- ever notice how the word "prescription", which actually means "recommendation" is used as if it means "license"? If you need a substance but the witch doctors who represent Big Pharma say you don't you can be imprisoned for posessing it -- now that's real insanity!

Re:This will be interesting.... (1)

physburn (1095481) | more than 4 years ago | (#32622274)

FDA rules are pretty strong, but it would be very easy to sell snake oil cures otherwise.

Re:This will be interesting.... (0)

Anonymous Coward | more than 4 years ago | (#32621908)

Geneva Conventions apply to circumstances of war, not random people going to medical clinics that are on the shady side.

There may be some international agreement or panel on the subject, but they probably go by another name.

Re:This will be interesting.... (0)

allaunjsilverfox2 (882195) | more than 4 years ago | (#32621932)

Noted, thank you. I'll make sure to pay closer attention to the wording, as I'm only marginally familiar with the convention. Though I wouldn't be surprised if the doctors were somehow connected to the state.

Re:This will be interesting.... (2, Informative)

RsG (809189) | more than 4 years ago | (#32622412)

Noted, thank you. I'll make sure to pay closer attention to the wording, as I'm only marginally familiar with the convention. Though I wouldn't be surprised if the doctors were somehow connected to the state.

For future reference, whenever somebody tells you that "the Geneva Convention says you can/can't do X", that should immediately set off your bullshit detector. The conventions have become a kind of layperson shorthand for "international regulations", so everybody and their dog has some pretty weird notions about what they cover. People see these references to the GCs, assume the person making the reference knows better than they do, and the cycle continues.

The Geneva Conventions cover the treatment, in wartime, of prisoners, wounded, civilians and medics. That is literally all there is to them.

Now, back on to the topic at hand, medical tourism is one of those intractable problems that nobody wants to admit can't be fixed, irrespective of whether they ought to be. The US cannot control where its citizens travel, or what they do in other countries - look for example at the number of American tourists in Cuba, most of whom stopped over somewhere else en route to circumvent the restrictions on traveling there. Actually, this isn't specific to the US; no first world democracy can effectively regulate the actions of their citizens going abroad.

Thus, the only party in this whole affair who have any say in what Americans visiting Thailand can and cannot do is the Thai government. Meaning the only way Americans will stop going to Thai hospitals for dodgy untried treatments is if said hospitals are no longer allowed to offer them (either due to Thailand adopting USFDA style regulations, or by it prosecuting the purveyors of said treatments under existing laws).

So what? (2, Insightful)

orangebook (924303) | more than 4 years ago | (#32621872)

It was her choice, she decided to take the risk. Adults make decisions about their own life (or death).

Re:So what? (5, Insightful)

DJRumpy (1345787) | more than 4 years ago | (#32621894)

You assume she knew the risks, when it's very possible the scientists themselves didn't understand all of the risks. They also may not have disclosed the known risks.

Re:So what? (1)

orangebook (924303) | more than 4 years ago | (#32621920)

Yes, I assume that. It's not like these clinic operate cheating the patients this is all good and tested. Patients know it is new and dangerous, and they have to sign all kind of documents releasing the doctors of any responsibility.

Re:So what? (-1, Troll)

Anonymous Coward | more than 4 years ago | (#32621924)

You wouldn't say that going to a strange country for an experimental surgery is risky?

Re:So what? (2, Insightful)

Ethanol-fueled (1125189) | more than 4 years ago | (#32621934)

Thailand isn't exactly known for health and quality medicine. Dr. Nick Riviera would've done a better job than they did:

However, the Thai clinic didn't inject the stem cells into the patient's blood stream [ Which TFA says is the proper way to do it, with good results -- E.f. ], instead they injected them directly into her kidneys. That means the stem cells did nothing to stop the immune system's attack on the organs-and they instead produced never-before-seen side effects

Hmm, Perhaps I should hold off on that sex-change operation and save up for Johns Hopkins instead.

Re:So what? (4, Interesting)

Vinegar Joe (998110) | more than 4 years ago | (#32622032)

Thailand isn't exactly known for health and quality medicine

Hundreds of thousands of westerners go to Thailand for treatment every year. I was treated for a very serious lung infection at Bumrungrad Hospital in Bangkok back in 1995 and the treatment was better than any I've received in the US or Europe.

http://www.bumrungrad.com/ [bumrungrad.com]
http://en.wikipedia.org/wiki/Medical_tourism#Thailand [wikipedia.org]

Re:So what? (0, Offtopic)

dr. chuck bunsen (762090) | more than 4 years ago | (#32622082)

That is a really funny name for a hospital. Are they all graduates of Bum Runs University? Also, when the focal point of your homepage is "Why Trust Us", then I don't trust you.

Re:So what? (1, Funny)

Hognoxious (631665) | more than 4 years ago | (#32622246)

What do you expect in country that has a king called Bumboil? And on top of that it's illegal to make fun of him. If I were to say "Does he have a boil on his bum, LOLELEVEN!!!", I could get arre$ G76
&* no carrier

Re:So what? (1)

Concerned Onlooker (473481) | more than 4 years ago | (#32622220)

"Dr. Nick Riviera would've done a better job than they did"

Personally, I would prefer to be under the care of Dr. Leo Spaceman. He's a damn good doctor. And a pretty good dentist.

Re:So what? (3, Insightful)

Kitkoan (1719118) | more than 4 years ago | (#32622392)

You assume she knew the risks, when it's very possible the scientists themselves didn't understand all of the risks. They also may not have disclosed the known risks.

Welcome to the concept of 'experimental' treatment. It means they don't know exactly what it will do or all the possible risks. As TFA states the problem being 'A woman with kidney disease has died after receiving an experimental stem cell treatment... sparked lively debates around the Internet about whether patients should be able to willingly take on risks associated with experimental treatments.' I say let them if they know its experimental (and what experimental entails). If someone has something incurable that can either disable/cause death in the short term then they might be willing to try something experimental as it's at least a hope for something instead of just sitting there and either watching life pass them by/waiting to die. Best case they are part of finding out the cure, worst case they die and we learn why and they knew that death was a very possible answer.

Re:So what? (1)

sg_oneill (159032) | more than 4 years ago | (#32622208)

The problem seems to be that these clinics where presenting people not qualified to make truly informed decisions (ie folks like you or I who are not doctors or scientists) an authoritive sounding advice that says "This will cure you!", when in fact it was bunkum, and dangerous bunkum at that.

"almodlst certainly killed her"... (1, Interesting)

Anonymous Coward | more than 4 years ago | (#32621884)

that's like me saying "he was absolutely, undoubtedly wrong. Maybe".

Re:"almodlst certainly killed her"... (2, Insightful)

interkin3tic (1469267) | more than 4 years ago | (#32622054)

Scientists and doctors are often trained not to overstate conclusions, since things are never certain. Which is partially why creationists can say "It's just a theory" and rather than just say "You're wrong and an idiot" scientists usually start explaining how they're mostly wrong, and by the third paragraph, anyone undecided lost interest and decided evolution was just a theory.

In this case, you could hypothesize that she may have been the first known victim of an extremely rare disease, independant from the lupus, that would have killed her with growths on her kidney even without the injections. Sure, that's unlikely, occam's razor comes to mind, but it would be overstating it to say it is 100% certain to be the cause. You might be able to do a test that would make it more certain, but why waste the time, it's certain enough not to suggest not doing what these "doctors" did.

Re:"almodlst certainly killed her"... (1)

interkin3tic (1469267) | more than 4 years ago | (#32622100)

Extra not in there...

Re:"almodlst certainly killed her"... (-1, Flamebait)

Anonymous Coward | more than 4 years ago | (#32622228)

You don't seem to have a very good grasp of the scientific method... "It's just a theory" applies to the Theory of Evolution because macro-evolution has never been observed scientifically, and likely will not be for a very long time.

Re:"almodlst certainly killed her"... (1, Insightful)

Low Ranked Craig (1327799) | more than 4 years ago | (#32622292)

The term "macroevolution" frequently arises within the context of the evolution/creation debate, usually used by creationists alleging a significant difference between the evolutionary changes observed in field and laboratory studies and the larger scale macroevolutionary changes that scientists believe to have taken thousands or millions of years to occur. They may accept that evolutionary change is possible within species ("microevolution"), but deny that one species can evolve into another ("macroevolution"). Contrary to this belief among the anti-evolution movement proponents, evolution of life forms beyond the species level ("macroevolution", i.e. speciation in a specific case) has indeed been observed multiple times under both controlled laboratory conditions and in nature.

Creationism and Intelligent Design are not science. By your logic gravity is also "only a theory". I invite you to step off the roof, because being only a theory, gravity might not affect you.

Re:"almodlst certainly killed her"... (0)

Anonymous Coward | more than 4 years ago | (#32622406)

Roll a d20 first though....

Shit happens (0)

Anonymous Coward | more than 4 years ago | (#32621890)

Suck it up and deal with it.

Aim for the real problem. (4, Insightful)

jack2000 (1178961) | more than 4 years ago | (#32621900)

You see? This is the reality of our time. Ignorance and stupidity prevents science from advancing proper. Instead people have to go to dodgy places to get some form of treatment often provided by complete shams.
None of this would be happening if working with stem cells and bioengineering proper was legalized at large.

Re:Aim for the real problem. (1)

zakmdot (1829936) | more than 4 years ago | (#32621916)

While this is true, the situation won't/can't be remedied until someone is able to form a bridge between Ethics/Morals and Science. Because sometimes, the two can't exist in the same place. This is one of those times.

Re:Aim for the real problem. (5, Insightful)

Anonymous Coward | more than 4 years ago | (#32621966)

No bridge is necessary. The religious freaks are flat out fucking wrong. There is nothing wrong with using someones own stem cells to attempt to cure them, and only outrageous stupidity/subhumanism could make such a claim.

Re:Aim for the real problem. (0, Flamebait)

dr. chuck bunsen (762090) | more than 4 years ago | (#32622112)

I agree. It is very frustrating that people can really, truly, be that damn stupid. And I mean that in the meanest possible way. Dumb fucks. However, I don't believe there are actually any explicit laws against using a persons stem cells for treatment. IIRC, the issue was that for research scientists needed the stem cells from aborted fetuses. And then out came the long line of dipshits to shut them down.

Re:Aim for the real problem. (1, Interesting)

bendodge (998616) | more than 4 years ago | (#32622170)

I am a religious freak. And I do not oppose adult stem cell research at all. Hey, my nephew probably owes his life to it. I do oppose embryonic stem cell research, because it creates a demand for dead babies, which I have a huge moral problem with.

Also, adult stem cell research has led to over seventy approved treatments being used today. The number from embryonic research? Zero. But for some reason all the noise is made about embryonic research. I really do not understand why. Especially with the 2005 discovery that skin cells can essentially be transformed into stem cells [washingtonpost.com] without killing anyone.

To summarize: no, we (or at least my circle of contacts) are not

flat out fucking wrong

, anti-science, or subhuman. There is also little reason to fund embryonic stem cell research when adult stem cell research is so much more promising.

Re:Aim for the real problem. (0, Insightful)

Anonymous Coward | more than 4 years ago | (#32622240)

How do you deal with the fact that nothing truly miraculous happens? How come every miracle has some other explanation?

Here's a real miracle:

The clouds grow wings and start raining jelly beans on the ground, while every plant on earth starts singing Weezer's "Buddy Holly" while 1,000,000 Elvis's appear floating 20 feet above the ground playing accordions made of bread.

Your problem in a nutshell: you fucking religious freaks have no imagination whatsoever.

Sad lives really. Small, and sad.

Re:Aim for the real problem. (2, Insightful)

whoop (194) | more than 4 years ago | (#32622286)

Also, I believe the political hysteria created over the issue has led to this woman going the lengths she did to be "cured." Stem-cell research has been heralded for years as an answer to unlimited potential ailments. It could theoretically cure everything in the world. This allows one side to paint the other side religious nuts for wanting to stop this miracle-in-waiting.

Bush didn't ban fetal stem cell research, but only federal money to it. If there were any realistic thought that they could be used to cure everything, you would think someone would fund it so they can rake in trillions from the profits. Bill Gates, T Boone Pickens, and the like do see potential profits in the alternative-energy trade, so that's where the money goes, not some pie-in-the-sky dream for medical utopia.

Re:Aim for the real problem. (1)

Culture20 (968837) | more than 4 years ago | (#32622328)

I am a religious freak. And I do not oppose adult stem cell research at all. Hey, my nephew probably owes his life to it. I do oppose embryonic stem cell research, because it creates a demand for dead babies, which I have a huge moral problem with.

Also, adult stem cell research has led to over seventy approved treatments being used today. The number from embryonic research? Zero. But for some reason all the noise is made about embryonic research. I really do not understand why.

Of course you do. There is a group that has a near monopoly on making babies dead. They need sustained demand, and a permanent cultural shift into thinking that unborn babies are just harvestable tissue.

Re:Aim for the real problem. (0)

Anonymous Coward | more than 4 years ago | (#32622336)

Okay, so I see two rational replies to my original post. But two rational people do not in any sense of the word outweigh several million crazies.

Good for you! But the crazies have successfully hijacked your religion beyond the point of redemption. You need to come up with a new name for it, to distinguish yourselves from them.

Re:Aim for the real problem. (2, Funny)

Pikoro (844299) | more than 4 years ago | (#32622398)

Athiest?

Re:Aim for the real problem. (5, Informative)

Penguinshit (591885) | more than 4 years ago | (#32622348)

Adult stem cells have been studied for 40 years. Embryonic stem cells have been studied for 12. Adult stem cell therapies are limited to blood disorders (mostly bone marrow transplants).

New ASC therapies are in trials using manipulation techniques learned from ESC research, but simply nothing can match the pluripotency of ESCs. Induced Pluripotent Stem Cells (ipSCs) are fine for research but due to the induction methods and production efficiency issues are wholly unsuitable for therapies.

The "market for dead babies" line is just so much inflammatory ignorant bullshit. The lines are generated from surplus material which would otherwise be discarded.

Yes, you are flat out wrong.

Re:Aim for the real problem. (1)

Jah-Wren Ryel (80510) | more than 4 years ago | (#32622384)

Also, adult stem cell research has led to over seventy approved treatments being used today. The number from embryonic research? Zero.

I dunno if your numbers are true, but your reasoning is terrible.

It's like the anti-drug guys saying basically the same thing when its been essentially impossible to get funding or even legal permission to do studies of potential beneficial uses of pot and lsd for the last 40 years. When it is practically impossible to do significant research on a topic it should be no surprise that there are no results. And no, those ~8 lines of stem cells that have been around for a billion generations now are inadequate for much research - and the article you linked to is far from a done deal it's "early stage of development" and since there hasn't been much talk in the intervening half decade its reasonable to assume it was a dead-end or at best just one step of many on the road.

Re:Aim for the real problem. (4, Insightful)

BigDukeSix (832501) | more than 4 years ago | (#32622166)

For what it's worth, at least some "religious freaks" are perfectly capable of differentiating between stem cells of embryonic origin versus autologous stem cells. I have a number of colleagues who have (successfully) lobbied for funding from some of these same people to support their own stem cell work (adult autologous only). The message "don't just stand against things, be in favor of a solution" has been very, very powerful for people who do not consider themselves to be either hypocrites or freaks.

Re:Aim for the real problem. (2, Interesting)

Ethanol-fueled (1125189) | more than 4 years ago | (#32622042)

Ethics and morals are obsolete at best and fairy tales at worst. Only the threat of force keeps us from taking whatever we want. White-collar big-money grabbers are encouraged and enabled, in part because they don't face the same razor-necklace prison that the rest of us would.

For every man who was Madoff an example, there are a million other CEOs and other suited crooks working for the financial industry, with 30 million dollar bonuses. You'd kill your first-born son if it meant 50 million bucks and nobody ever finding out about it. With regards to scientific exploration, internal and external -- fuck it, do it. That's how we learn, for better or worse.

Re:Aim for the real problem. (0)

Anonymous Coward | more than 4 years ago | (#32622262)

You act as if this newfangled "threat of force" has pushed ethics and morals into obsolescence. Might want to pick up a history book on that one...even one of those new ones from Texas. MLK, Ghandi, or a host of philosophers and ethicists might take issue with you.
 
It's not about how morals and ethics don't exist. It's about how the absolutely corruptive nature of wealth and power.

Re:Aim for the real problem. (2, Insightful)

ObsessiveMathsFreak (773371) | more than 4 years ago | (#32621948)

Ignorance and stupidity prevents science from advancing proper.

It's not ignorance or stupidity. It's morality and ethics. And before you roll your eyes, please try to remember what happens when the medical profession tries to set these aside in the name of progress(ironically more often done by self proclaimed "moral societies", but I digress). The field does not have a good track record, and that's just on the research side. The commercial side is arguably worse.

None of this would be happening if working with stem cells and bioengineering proper was legalized at large.

You have even less evidence of that than the doctors in this case who thought their treatment would work. The reality is the question of "if something works" and "if something should be done" are two very, very different things. And progress does not happen when you ignore either one.

This won't happen until you destroy statistics. (3, Insightful)

pizzach (1011925) | more than 4 years ago | (#32621974)

When you have different groups advertising conflicting "scientific" results for their own interests, it is no wonder the layman doesn't believe in science anymore. Burn the businessmen!

Eggs have less cholesterol than previously thought! We both know the world is and isn't global warming. We are/aren't on the verge of running out of oil. We have conclusive evidence that cell phones do and don't cause cancer. Pluto is no longer a planet! This is the face of science to many people.

Re:Aim for the real problem. (1, Informative)

Anonymous Coward | more than 4 years ago | (#32622236)

Bumrungrad [wikipedia.org] is actually internationally accredited and quite famous, not dodgy.

Re:Aim for the real problem. (1)

SurlyJest (1044344) | more than 4 years ago | (#32622354)

Nonsense

Stem cell therapies (even using embryo-derived cell lines) are not illegal. However, there are professional and ethical standards of treatment and research protocols that would prohibit this kind of "scientific voodoo" medicine. The sad fact is that this woman was desperate enough to try this snake oil treatment, but it was a serious error in judgment.

We don't know the details of her decision or of the medical issue that she faced. But there is no "policy" issue here; we can't command the science to provide a reliable treatment without careful study. Sadly, this patient either didn't have the time or the patience to wait and paid the price for that.

Dear Scienticians, (0)

Anonymous Coward | more than 4 years ago | (#32621914)

Please keep up this type of research. We can now eliminate this method as a successful way of using stem cells. I'm sure that in 100 years people will look at this injection of blood and bone marrow with the same look of pity we display when we read about phrenology. In the meantime real scientists will find a safe way for the rest of us to benefit from stem cells.

If you read the article, there's this bit: (1)

jaymz2k4 (790806) | more than 4 years ago | (#32621930)

However, the Thai clinic didn’t inject the stem cells into the patient’s blood stream, instead they injected them directly into her kidneys. That means the stem cells did nothing to stop the immune system’s attack on the organs–and they instead produced never-before-seen side effects.

Apparently had the treatment been in her blood stream it would probably have been ok, the shot straight to the kidneys was a totally new thing. In other words someone didn't know what they where doing and screwed up.

Re:If you read the article, there's this bit: (1)

mdenham (747985) | more than 4 years ago | (#32621992)

Kind of weird that the stem cells differentiated into bone marrow in the kidney, though - it'd be interesting to (through, probably, animal experiments) determine if that's the "default" differentiation in the presence of antibodies or what.

On that note, I wonder what you'd get if you injected the stem cells into where bone marrow should be if you had an autoimmune disorder that attacked the bone marrow. "Hey ma! I gots brains in mah bones!" :-D

Re:If you read the article, there's this bit: (1)

whoop (194) | more than 4 years ago | (#32622382)

Or this bit:
the woman went into a decline soon after her treatment. Within three months she required dialysis, within a year one kidney had failed, and within two years she was dead

It's not like she died soon after this stem cell treatment. Hell, it doesn't even say that's what caused her death. It just sounds like an interesting analysis of "what happens if you inject stem cells into a kidney" by doctors who weren't willing to do that to a patient themselves.

The risks aren't bad for some of us. (5, Insightful)

Chuck_McDevitt (665265) | more than 4 years ago | (#32621964)

For example, I have terminal cancer, although for now I feel fine. The doctors know that none of the FDA approved treatments will stop the cancer, the best they can do is slow it down some. If I saw a treatment that had a high risk of killing me, but a decent chance it would cure me, I'd go for it, even knowing it might kill me.

Re:The risks aren't bad for some of us. (5, Interesting)

Ironchew (1069966) | more than 4 years ago | (#32622016)

Mod parent up.
Autoimmune diseases tear the body apart. I didn't RTFA, but somebody in end-stage kidney failure would likely choose some risky options, maybe even unscientific ones. I am in no way endorsing the pseudoscience going on here with the stem cell treatments, but palliative care is the only option available with modern medicine in these circumstances. With all the stupid laws here in the United States outlawing effective pain-relieving drugs and assisted suicide, people are getting desperate.

Re:The risks aren't bad for some of us. (3, Informative)

whoop (194) | more than 4 years ago | (#32622226)

but somebody in end-stage kidney failure would likely choose some risky options, maybe even unscientific ones.

I actually left the tech industry in 2001 to work with kidney failure patients. Kidney failure is not the end of one's life. You can live plenty of decades with no kidney function. It is certainly a drastic change to go from someone with no medical issues to low kidney function, but it is quite manageable.

To go to the lengths of flying across the world for an experimental treatment that doesn't even do the treatment right (just jam stem cells into some body part? that sounds fishy to me) seems silly. If she's got the money to do this, why not just get a regular old-fashioned kidney transplant from one of these poorer countries? That procedure has at least 50 years of research behind it to be somewhat successful (with the caveat that any kidney treatment including transplants is just that, a treatment, not a cure).

Re:The risks aren't bad for some of us. (1)

jamesh (87723) | more than 4 years ago | (#32622088)

I've often wondered what i'd do in the same position, but it's impossible to say without actually being there... afaik, with cancer treatments the sooner you start the better, and if you are feeling fine now and the treatment could save you or kill you tomorrow then I'm not so sure i would.

Fingers crossed for you that they do come up with a cure tomorrow.

Re:The risks aren't bad for some of us. (1)

trout007 (975317) | more than 4 years ago | (#32622098)

You have to know how to get around the laws. Just have these types of tests in Washington or Oregon. Say they are assisted suicides by injection of something that might kill you. If you live and are cured it was just a happy accident. Same thing for prostitution. Just have the whore sign a modeling contract and let a Flip Video Camera role. Now it's not prostitution it's acting!!!

spontaneous remission does happen (1)

nido (102070) | more than 4 years ago | (#32622158)

Andrew Weil, M.D., wrote a book [google.com] on the subject. There are always options, whether or not your doctor is aware of them is another matter entirely.

What kind of cancer?

Re:The risks aren't bad for some of us. (0)

Anonymous Coward | more than 4 years ago | (#32622188)

Good point, and I sympathize with you, but in this case there was precisely ZERO chance that the "treatment" would cure her.

Re:The risks aren't bad for some of us. (0)

Anonymous Coward | more than 4 years ago | (#32622194)

Try to read about getting a disease.

Nowadays treatment is immunosuppressive, but early accounts tell about cancer being cured about a grave infection.

Sorry, but all I have now is hearsay. Things might suddenly change, though...

Re:The risks aren't bad for some of us. (1)

Saint Stephen (19450) | more than 4 years ago | (#32622300)

That's really bad science. Medicine is about trying things that are proven safe, not believing in advance that something is the cure and doing it first. That's why we torture all those poor little animals.

Re:The risks aren't bad for some of us. (1, Informative)

bmajik (96670) | more than 4 years ago | (#32622312)

I'm sorry about your situation.

I'm going to do something a little distasteful, which is to bring political ideology into a thread where a man talks about his grim situation. But in your case, it is a matter of life and death, and it is for many people every year. It's not so often that we hear from them first hand.

You always hear politicans talk about shrinking the government in vague ways. If you listen long enough, you start to hear from libertarians that say _crazy_ sounding stuff.

One such occasion was when I started reading Milton Friedman, who is very middle of the road between "now" and the "utopian anarchy" of someone like Murray Rothbard.

Anyway, Milton Friedman (and a bunch of other people) says that the FDA should be abolished.

As I read I thought, "sure, it's not constitutionally authorized, and sure, it's more than is strictly required to run the country, but really, we'd be better off without it?"

And then I continued to read, and he made the case very eloquently: all of the testing that the FDA currently does could and would be done by non-governmental entities, or even perhaps government entities. There is certainly a useful function being done there.

But where the FDA does damage is what is affecting the OP. There are people out there, whom after consulting with their doctors, are ready to try a new and experimental treatment. They've considered the risks and they've decided to go for it.

And the FDA says, in effect, "NO. We don't trust you and your doctor to make decisiosn for yourself, and we would honestly rather that you died -- for sure, all the way -- than chance you _maybe_ getting better or _maybe_ getting sicker".

And so you have the weird outcome that the FDA is responsible for the deaths of many Americans every year -- people who are unwilling to break the law in this country [and unwilling or unable to get treatment elsewhere] die every year because the FDA doesn't allow them to try and live.

The insidious evil of government power is that there is always a downside. Government's only tool is coercion. In this case, an agency meant to protect Americans gives some of them a death sentence. Every year.

It's easy to say "oh sure, but they help more than they kill".

It's very easy to say if you aren't one of the ones getting killed.

The FDA shouldn't be able to ban medicines or procedures. It is killing Americans.

Re:The risks aren't bad for some of us. (1)

jollyreaper (513215) | more than 4 years ago | (#32622394)

For example, I have terminal cancer, although for now I feel fine. The doctors know that none of the FDA approved treatments will stop the cancer, the best they can do is slow it down some. If I saw a treatment that had a high risk of killing me, but a decent chance it would cure me, I'd go for it, even knowing it might kill me.

That fucking sucks. My condolences. I completely agree with what you're saying. If the patient is making an informed consent decision, I don't see what the problem is. There could be some room for argument if a healthy, overweight person signs on for a potentially lethal weight loss procedure since that's getting into violating the whole "do no harm" territory. But if a person's already terminal, it's not like the experimental treatments could make things any worse. The whole informed consent thing would avoid scams where uninformed patients are tricked into dangerous procedures of dubious medical value.

my body, my choice. (1)

Khashishi (775369) | more than 4 years ago | (#32621978)

I don't know how any country that calls itself free can prohibit this sort of thing.

Re:my body, my choice. (1)

trout007 (975317) | more than 4 years ago | (#32622018)

Agreed. There should be an FDA but it should be like UL or the Good Housekeeping seal of approval. That way if you want to inject buffalo stem cells into your lips go ahead it just won't be FDA approved.

Re:my body, my choice. (1)

Hadlock (143607) | more than 4 years ago | (#32622134)

The FDA could start a program named (yes really) "Snake Oil Salesman Licence". That way you're A) Registered with the FDA (papertrail) and B) the consumer is aware that the proprietor isn't selling medically acknowledged remedies, which could infact actually be Snake Oil. The media would have a field day with this; "Local Snake Oil Salesman promotes new weight loss drug", "Global Snake Oil Salesman Corporation X promotes new erectile dysfunction drug", "Snake Oil Salesmen promote dangerous new stem cell therapy in Thailand" etc etc...

Re:my body, my choice. (0)

Anonymous Coward | more than 4 years ago | (#32622124)

Or, if anything goes wrong, "My Lawyer, My Lawsuit."

Re:my body, my choice. (1)

Wyatt Earp (1029) | more than 4 years ago | (#32622160)

So, a country that calls itself free can't ban murder, manslaughter, torture, mutilation or untested medical experimentation?

By that definition Nazi Germany was "free" with Dr Mengele as a minister of science.

So the FDA, product recalls are all infringing on freedom?

avoiding 'shortcuts' when one is terminally ill (-1)

Anonymous Coward | more than 4 years ago | (#32621984)

heck, if the 'doctor' says it, that must be it, so what's the fuss? & just what is the 'longcut'? chemo, opiates, painful disintegration, etc... who would ever want to risk missing all that?

never a better time for all of us to consult with/trust in our creators. the lights are coming up rapidly all over now. see you there?

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"The current rate of extinction is around 10 to 100 times the usual background level, and has been elevated above the background level since the Pleistocene. The current extinction rate is more rapid than in any other extinction event in earth history, and 50% of species could be extinct by the end of this century. While the role of humans is unclear in the longer-term extinction pattern, it is clear that factors such as deforestation, habitat destruction, hunting, the introduction of non-native species, pollution and climate change have reduced biodiversity profoundly.' (wiki)

"I think the bottom line is, what kind of a world do you want to leave for your children," Andrew Smith, a professor in the Arizona State University School of Life Sciences, said in a telephone interview. "How impoverished we would be if we lost 25 percent of the world's mammals," said Smith, one of more than 100 co-authors of the report. "Within our lifetime hundreds of species could be lost as a result of our own actions, a frightening sign of what is happening to the ecosystems where they live," added Julia Marton-Lefevre, IUCN director general. "We must now set clear targets for the future to reverse this trend to ensure that our enduring legacy is not to wipe out many of our closest relatives."--

"The wealth of the universe is for me. Every thing is explicable and practical for me .... I am defeated all the time; yet to victory I am born." --emerson

no need to confuse 'religion' with being a spiritual being. our soul purpose here is to care for one another. failing that, we're simply passing through (excess baggage) being distracted/consumed by the guaranteed to fail illusionary trappings of man'kind'. & recently (about 10,000 years ago) it was determined that hoarding & excess by a few, resulted in negative consequences for all.

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"If my people, which are called by my name, shall humble themselves, and pray, and seek my face, and turn from their wicked ways; then will I hear from heaven, and will forgive their sin, and will heal their land." )one does not need to agree whois in charge to grasp the notion that there may be some assistance available to us(

boeing, boeing, gone.

Re:avoiding 'shortcuts' when one is terminally ill (0)

Anonymous Coward | more than 4 years ago | (#32622370)

You suffer from a kind of batshit crazy called integration issues.

What is needed is 2 levels of FDA (4, Interesting)

WindBourne (631190) | more than 4 years ago | (#32621986)

The problem is that ppl MUST resort to going out of the nations health care because they need to take risks. The problem is that other than the majority of western nations(US, most of EU, Canada, Australia, Japan,etc), I personally would not trust other nation's health system to do the right things.

So, the solution should 2 different FDAs.
The first protects normal ppl. THat is it makes certain that we do not have more issues like we have with Tylenol, Ibuprofin, etc. Likewise, it says what procedures to risk, etc.

HOWEVER, once you have exhausted all avenues, and your life is on a thread, then you can step up to a different protocol. But ppl and companies in this arena, than have medical protection, etc., but have access to radical treatments. The idea is that FDA2 would make certain that it is not done DANGEROUSLY, at least without the patient having a good understanding.

If we are going to make advances, we NEED ppl to be allowed to take INFORMED risks, but safely.

Re:What is needed is 2 levels of FDA (4, Informative)

LurkerXXX (667952) | more than 4 years ago | (#32622062)

This system already exist. Perhaps you should read up on Phase I clinical trials.

Re:What is needed is 2 levels of FDA (1)

trout007 (975317) | more than 4 years ago | (#32622080)

And that system was so super successful this woman had to fly to Thailand.

Re:What is needed is 2 levels of FDA (1)

LurkerXXX (667952) | more than 4 years ago | (#32622106)

Where what happened to her?

Re:What is needed is 2 levels of FDA (3, Insightful)

Wyatt Earp (1029) | more than 4 years ago | (#32622164)

Gee, I think she died of freedom of choice.

Re:What is needed is 2 levels of FDA (4, Informative)

LurkerXXX (667952) | more than 4 years ago | (#32622356)

She tried some wild crap in Thailand. Not exactly a place known for it's cutting edge science. There are a number of countries doing a lot of really good biology work. Thailand isn't one of them.

Meanwhile, back in the States, where the NIH spends $28+ Billion a year on research, on clinialtrials.gov [clinicaltrials.gov] you can look up her condition, lupus nephritis, and see that there are *19* different clinical trials recruiting patients right now for that disease.

She died of freedom of choice alright. Just not a very good choice.

Re:What is needed is 2 levels of FDA (1, Interesting)

Anonymous Coward | more than 4 years ago | (#32622212)

As pointed out in another comment, the Thai doctors performed a proceedure that was never before tested with adult stemcells; namely, direct site injection, rather than intravenous injection.

This is essentially the kind of thing that the GP wants to AVOID have happen, by creating a second regulatory body for "extreme" case individuals.

The prior poster commenting about Phase1 trials omits that to even *GET* to human phase 1 trials, you have to go through DECADES of animal model research. (At least when concerned with surgical treatments, and stem cell injections are essentially a self-transplant surgery.)

This is precisely why you have "widely used" surgical practices in Europe, that *STILL* are not even at phase 1 here in the US.

Thus, the "Phase 1" rhetoric is total FAIL.

I agree with the GP, that special provisions should be available for extreme, "Last ditch effort" cases.

Re:What is needed is 2 levels of FDA (2, Informative)

TubeSteak (669689) | more than 4 years ago | (#32622276)

This system already exist. Perhaps you should read up on Phase I clinical trials.

Pharmaceutical companies test a lot of drugs in Europe or India/Asia before they ever get close to America's shores.
There are drugs that have been legal in Europe for years before the FDA even allowed trials.

Re:What is needed is 2 levels of FDA (5, Informative)

fuzzyfuzzyfungus (1223518) | more than 4 years ago | (#32622072)

To a nontrivial(though, certainly, not wholly comprehensive) degree, this system already exists de facto.

First, you have FDA-approved drugs, treatments, and devices. Then, you have clinical trials of drugs, treatments, and devices hoping to join the first category; but not yet there.

This latter category recruits trial subjects from either the public at large(for the safety/tolerability portion of the studies) or from the patient pool for whatever the condition is(for the efficacy portion). This means that, in practice, a fair number of patients(weighted toward those for whom the FDA-approved stuff isn't cutting it) are taking experimental, unapproved, therapies, with effort being made to minimize the danger; but with the recognition that this isn't without its risks. Now, it is true that not everyone who wants to can necessarily get into a given trial. Some are just size-limited. In other cases, the group running the trial might be cherry-picking patients to try to get the results they want(ie. if you drug kills a bunch of people, or fails to cure, your odds of FDA approval go down. This creates an incentive to keep the hopeless cases away.)

There is also the intermediate category of off-label use. Once something is FDA-approved, doctors are not required to use it only for whatever it was originally approved for(the manufacturer can't market it for any unapproved use; but doctors are free to prescribe it for pretty much whatever they deem suitable, subject only to the risk of this being declared "malpractice").

Re:What is needed is 2 levels of FDA (1)

SurlyJest (1044344) | more than 4 years ago | (#32622380)

Mod parent up as informative amongst a raft of uninformed half-baked opinion.

Re:What is needed is 2 levels of FDA (0)

Anonymous Coward | more than 4 years ago | (#32622086)

We can't afford to waste time regulating these things while the Thai's gain advantage in the kidney marrow industry! engage the radical treatment checklist!

Stem cells in blood... good!
Stem cells in kidney... bad.
Stem cells in eye... ?
Stem cell suppositories... ?
Stem cells that bark, and when they bark they shoot cancer out of their mouths... ?

Wow (1)

Windwraith (932426) | more than 4 years ago | (#32622006)

Blood vessels and bone marrow all inside a kidney? This is even more hardcore than something a horror film might throw at you.
Reality pwns fiction once again.

Re:Wow (2, Insightful)

jack2000 (1178961) | more than 4 years ago | (#32622048)

I only wish the words "tangled mixtures" weren't in the summary. Now I'm going to spend the better part of a day desperately trying not to think about that.

Re:Wow (3, Interesting)

Anonymous Coward | more than 4 years ago | (#32622268)

Any "Hungry" tumor will create a "vasculoma". (A tangled mass of thick veins) This is because the tumor produces "stress" hormones when it is "undernourished", which stimulates the production of these veins, which form in and around the site of the tumor, in order to feed said tumor.

This is one of the issues surrounding tumor removal, and why some tumors are unsafe to be removed.

Also, some totally benign tumors (slow growth, small if any risk of cancer) can develop vasculoma tissues inside and surrounding it. (I myself had a lipoma surrounded by vasculoma removed from my right arm a few years back.)

It sounds to me like the actual tumor was bone marrow tissue, which was abnormal.

This is common with adult harvested stemcells that have not been properly screened for pre-cancerous conditions. (Yes, you CAN have "Cancer" stem-cells, ESPECIALLY from adult sourced tissues.)

Personally though, I'd bet money that the reason why she developed bone marrow tissue was because of her already existant systemic inflammatory reaction. Such conditions cause the body to mass produce stemcells in the bone marrow, which then freely circulate in the bloodstream. However, this places a great deal of stress on the progenitor cells in that bone marrow, which can produce said earlier mentioned "cancer" stemcells, and can cause abnormal bone marrow to develop, which can metastisize (sp?).

I suspect that a better autopsy would find inflamed bone marrow, (in her bones), and the presence of marrow progenitor cells circulating in her blood.

Re:Wow (0)

Anonymous Coward | more than 4 years ago | (#32622296)

tg;dr (too gross, didn't read)

THIS IS NOT A PROBLEM !! (-1, Troll)

Anonymous Coward | more than 4 years ago | (#32622066)

This is a good thing for all concerned. Don't play God; you will die no matter what. When is up to God. Ahhhmmm

Uh... (3, Funny)

jav1231 (539129) | more than 4 years ago | (#32622092)

It's dangerous enough to inject things INTO someone in Thailand as a tourist, let alone be the one injected into! :o

FUD (5, Insightful)

Anonymous Coward | more than 4 years ago | (#32622094)

I'm a physician (I know, easy for an AC to say). There is nothing in the linked article to suggest that the treatment was directly linked to her death. It may or may not have contributed to her eventual renal failure but there are an untold number of people out there with nonfunctioning kidneys living for years on dialysis. Unusual tumors localized to the kidneys don't kill people. While I don't encourage patients to pursue treatments lacking in evidence of safety and efficacy, this article is just meant to spread FUD.

Re:FUD (0)

Anonymous Coward | more than 4 years ago | (#32622386)

Unusual tumors localized to the kidneys don't kill people

Really? And you know this how?

Even more shocking... (1, Funny)

bobdotorg (598873) | more than 4 years ago | (#32622102)

When she first arrived in Bangkok, she was a man.

Since she was going to die soon anyway. . . (0)

Anonymous Coward | more than 4 years ago | (#32622154)

. . . I don't see what the problem is. Plus, the doctors learned of a potential problem with this treatment. Free markets win again!

Anonymous Coward (0)

Anonymous Coward | more than 4 years ago | (#32622182)

Makes all the scrutiny cannabis treatment gets seem ridiculous, no?

You can't avoid it... (3, Insightful)

NotQuiteReal (608241) | more than 4 years ago | (#32622244)

Researchers say the treatment almost certainly killed her

And, without treatment? Nature would have taken it's course... I'd say let people try what they want (assuming the treatment is not a total scam.)

Health nuts are going to feel stupid someday, lying in hospitals dying of nothing. - Redd Foxx

Not the first time... (1)

harley78 (746436) | more than 4 years ago | (#32622252)

This isn't the first time. I recall a story about a fellow who went to China(I believe, either way it was SE Asia) after all was lost basically. He had stem cells injected into his brain or upper spinal region. Upon post mortem they found hair and finger nails growing in his brain. Initially it seemed to help; but the cells didn't differentiate the right way. If anyone could help with a link that'd be cool. I'm to lazy to do the lookup right now; but I think it was in Scientific American. Not surprised that willy nilly injections caused a death, duh.

Here's an idea... (0)

Anonymous Coward | more than 4 years ago | (#32622298)

How about we get Stem Cell Research in the US to a, y'know, reasonable level of advancement (something we could've done long ago if not for moral stupidity). That said, it was indeed her decision and that's fine, she should be able to make whatever decision she wants if she knows the risks.

For those that didn't RTFA... (5, Interesting)

raving griff (1157645) | more than 4 years ago | (#32622376)

It should be noted for those that didn't RTFA that this case was more of a cause of bad clinic than a bad procedure.

According to the article, patients with similar kidney issues in a clinical trial in which bone marrow stem cells were injected into the blood stream showed marked improvements.

This clinic, on the other hand, injected these cells directly into the kidney rather than into her blood stream, causing the adult stem cells to try to build blood vessels in her kidney when they should have injected the stem cells into her bloodstream.

So, in other words, had the clinic done what the had been at least moderately successful in previous trials rather than haphazardly throw their own spin onto it, the patient would likely have been fine.

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