Stem Cell Tourists Take Costa Rica Off the Agenda

An anonymous reader writes "Stem cell tourism is a booming and troubling industry, in which clinics in places like Mexico, China, and India offer rich tourists experimental stem-cell-based treatments, none of which have been approved by the FDA here in the US. (Check out some of these creepy sites that offer treatments for everything from autism to MS, and even the 'very common ailment called aging.') But in one positive development, Costa Rica just shut down its top stem cell clinic. Said the country's health minister, 'This isn't allowed in any serious country in the world.'"

Comments

Removing freedom isn't a "positive development"

[DavidinAla]

Are there some charlatans out there? Of course. Are there also legitimate treatments that the U.S. FDA just doesn't recognize yet? Of course. Why is it a good thing to take away people's freedom to decide for themselves which is which? Experts are frequently wrong. If people have the money to pay for treatments -- even if some of us think they're bad ideas -- why do we have the right to tell them what they can do with their money? It's arrogant to make that decision for them.

Re:Removing freedom isn't a "positive development"

[cephalien]

Well, hell -- by this logic, I should be able to build a nuclear reactor in my garage. Who cares? I can just sell power to the guy next door, even if the radiation cooks my neighbors.

After all, how do we know the 'experts' are right? I think all those Hiroshima photos are faked.

The point of experts is not that they're infallible, but that collectively they represent the best current 'state of the art' in a particular field. Sometimes, yes, they're wrong. But the judgements made to come to those collective conclusions are based on data, knowledge and experience that the average person does not (and cannot) have.

Who knows, maybe injecting a paraplegic with stem cells from a fetus will make them walk again. It might, someday. But right now it's stupid, dangerous, and foolhardy in the extreme. More importantly, it's a scam, and the government should be responsible for bringing those people to justice and stopping practices which masquerade as medical science when they clearly are not.

Get a clue, and stop trying to make everything an argument about how you should be allowed to be as stupid as you personally would like to be.

Re:Removing freedom isn't a "positive development"

[PopeRatzo]

Are there also legitimate treatments that the U.S. FDA just doesn't recognize yet? Of course.

Can you give us some examples?

I'm not doubting you, I'm just curious which ones come to mind. I know people who have diseases for which the current treatments are not really effective or have side-effects as bad as the disease, such as Hepatitis C. They've taken responsibility for their own treatment and seem to be doing pretty well. At the same time, regular consumers, much less sick and desperate people, don't really have the ability to determine who the charlatans are. So a system like the FDA, which is obviously imperfect, is really pretty necessary. The trick is to prevent the kind of corporate interference into the regulating body that we've seen with safety in the energy industry. A two year ban on any FDA employee taking a job with a Pharma isn't nearly enough. Hell, we've got people from the pharmaceutical industry writing the regulations just like we've got employees of the oil industry or coal industry or automotive industry writing the regs that govern those industries.

Forget "church and state". We need a separation of "corporation and state". We need a much more adversarial setup in our regulatory regime.

Re:Removing freedom isn't a "positive development"

[Anonymous Coward]

QFA. The one big difference is that Joe Scammed's stem cell treatment could not, in any way, lead to my city getting blown to bits. There's zero probability of that happening. So if Joe Scammed wants to be scammed, I say let him. Hopefully, even if the cure is a total bogus, the trip is enjoyable and the hope he gets improves his dying days. Hell, it might even work as a placebo on the smyptoms (won't get rid of cancer, but will make him feel less pain.) These things have been known to happen.

I think what the parent was saying was something like "if me being scammed doesn't hurt you, get off my lawn and let me be scammed." And I would tent to agree.

Re:Removing freedom isn't a "positive development"

[phantomfive]

A two year ban on any FDA employee taking a job with a Pharma isn't nearly enough. Hell, we've got people from the pharmaceutical industry writing the regulations just like we've got employees of the oil industry or coal industry or automotive industry writing the regs that govern those industries.

You basically have a choice, either someone from the industry writes the regulations, or someone who has no clue writes the regulations. Would you like a non-programmer to write style guidelines for Java at your company?

Personally, I think the best way is to have two people write it, one who is an advocate for the consumer, and one who knows the industry. The advocate for the consumer can set basic rules that everyone can agree on (don't be fraudulent, make sure there is a quick way to plug a well in case it breaks, etc), and the one who knows the industry can write more detailed, nuanced rules. That way, if it ends up the company was fraudulent, even if the followed all the other rules, they still get nailed.

Re:Removing freedom isn't a "positive development"

[caitsith01]

Here's an example.

Crohn's Disease is an inflammatory bowel disease. It presents in the form of parts of your digestive system being arbitrarily damaged by your body, seemingly in some kind of misplaced immune system response. This means ulcers, scarring, and a breakdown in effectiveness of whichever part or parts of the system are affected. It can occur anywhere from where food goes in to where waste comes out.

Doctors don't really know what causes it, and don't really know how to treat it.

Current theories about the cause include bacterial imbalance, extreme post-infective response by the immune system, genetics, and a lack of exposure to ordinary evironmental elements (Crohn's is much more prevalent in the developed world, suggesting that high levels of sanitation may play a part).

Current treatments range from oral steroids (nasty side effects) to hardcore anti-inflammatories, to immunomodulators (potentially very nasty side effects), to very scary drugs like Infliximab (which "works by binding to tumour necrosis factor alpha"... sounds great). Other fun treatments include moving to an all-liquid diet (which is a fringe treatment) and in many cases removal of chunks of your digestive tract.

So... based on the fact that Crohn's is more prevalent in the developed world, it has been suggested that maybe there is a link between the absence of a specific disease or parasite and Crohn's. Specifically, there are suggestions that hookworms, which are common in the developing world but almost non-existent in the developed world, might somehow play a role in preventing Crohn's. Eventually, a few people took the radical step of deliberately infecting themselves with hookworms. Lo and behold, the (admittedly not statistically significant) results were in some cases very promising indeed - something about the way hookworms trick your body into letting them live inside you also seems to help suppress whatever problem is behind Crohn's disease. In some cases patients have reported complete recovery from Crohn's by infecting themselves with around 100 specially grown, sanitized worms (initially from pigs, I think they use human-specific ones now).

Anyway, long story short: this was all looking interesting, and a controlled infection with a limited number of hookworms are widely accepted medically to present no serious health risk to humans. Proper testing was starting to be done, and there were steps being taken to properly commercialise hookworm production. However, in its wisdom about a year ago the FDA announced that (I understand without any data to support its concern) it was worried that hookworms might not be safe for people who are already sick. Like Crohn's sufferers. So it halted human studies on that basis. This has shut down studies in other countries because it makes the research less commercially appealing and because such things are inevitably a collaboration between several countries.

So, basically the FDA has said that research into a promising treatment to a nasty disease which might help people avoid horrible drugs or even more horrible surgery should be banned because, despite evidence to the contrary, it might be mildly bad for some people in some situations.

Coincidentally, Infliximab and some of the other big Crohn's drugs are extremely expensive and no doubt extremely profitable for large drug companies.

Thank you, FDA. Thank you.

Re:How is this a good thing?

[fuzzyfuzzyfungus]

The problem is not with people taking risks(well, that bothers the nanny-staters almost as much as the source of the stem cells bothers the godbots; but that isn't a big deal); but with how the sellers are representing the risks. Competent individuals choosing to take risks, or not, is freedom. Hucksters misrepresenting risks to desperate sick people is somewhere between fraud and manslaughter, depending on how it goes.

Re:How is this a good thing?

[cephalien]

Well, it's not even questionable ethically -- it's just completely unethical.

Second, we can't study them, because it would never be a properly controlled group unless you can properly account for the myriad of factors associated with such a study (type of disease, progression, lifestyle).

It's not as easy as just lumping together a dozen people who happen to have come to your 'clinic' to be injected with who knows what (preparation standards? Not in /my/ study!)

Anyone who is offering to inject stem cells into a human being at this point for treatment is a complete quack. End of story.

Re:I wonder...

[jittles]

A co-worker of mine just got back from a trip to Germany about a year ago to have his wife treated with stem-cells for Parkinson's research. It was insanely expensive, but it was done at a proper University type research facility and they told them up front that there was a significant possibility of it failing to do any good. The treatment seems to have failed to improve her condition, unfortunately.

It was definitely a stretch for them to be able to afford it, so I hope the researchers at least got some valuable information from it.

Re:How is this a good thing?

[PopeRatzo]

Hucksters misrepresenting risks to desperate sick people is somewhere between fraud and manslaughter, depending on how it goes.

What's the matter, you don't like the "free market"?

In a real Libertarian Utopia, we are free to defraud one another, even the most desperate and sick. Of course, Rand Paul would never give his business to anyone who would do that, because personally he finds fraud a bad thing. But he believes it would be worse for the government to interfere with a private business.

If we let the government interfere with companies that would perpetrate fraud, half the Fortune 500 would have to go out of business and the advertising industry would go dark tomorrow.

We have a lot more to fear from a corporate state than we do from a "nanny" state.

Tag this quotemedicinequote

[RyanFenton]

This is not medicine. I'm a huge proponent of embryonic stem cell research - that is not what these places are. Even in the linked pages, they don't call themselves real medicine - more like 1950's utopian therapy centers, complete with watercolor art and messages of "the promise of eternal life." I've seen cryonics center websites that are far, far more ethical and honest about the product they provide. The second website even puts its own title in quotes ('"the clinic"') to avoid being as actionable about their claims.

These sites are all about offering dubiously vague claims about what folks are saying about stem cells, then offering even more dubious treatments while standing behind the mystique of being a persecuted 'forbidden' super-technique. That would be fine if they were specific about what they were attempting, and if they could point to legitimate and active partners they were involved with in order to advance the science - but they're just namedropping the science to get the flim-flam magic appeal.

There's an endless series of variants of this style of bullshit. Take a look at these sites for just the tip of the iceburg in terms of keeping an eye on it:

Science Based Medicine

The JREF Website ($1 million verifiable reward for any evidence of the paranormal.)

Ryan Fenton

Re:Like US in 1800s

[Silly Man]

Don't tell that to someone with Gastroparesis. The FDA being influenced by large drug companies (especially the manufacturer of Reglan, the approved drug in the US) won't approve the the drug that is used in EVERY other industrialized country to treat this condition, Domperidone. A big part of that reason is lobbing. And the side effects of reglan is just plan scary.

Admit-tingly, the FDA does it job in general. But it is also a poster child of political influences and represents why government intervention in health care can be bad.

Re:Reasonable

[Conchobair]

It's got stems cells, its what the body craves.

Re:How is this a good thing?

[lgw]

Most rational libertarians would agree that the government's business in business includes fraud prevention, contract enforcement, and standardization of terms and measures used in contracts - all of which can be summarazied as "make contracts work". Contracts are nearly a religion for some libertarians.

Also, I don't think "non-profit" means what you want it to mean. For example, it's ofen the "non-profit" hospitals that are the most expensive and ritzy, and least likely to extend care to the indigent.

Re:because people are desperate for life

[lgw]

Libertarians are strongly anti-fraud. If there's one thing libaertarians agree on (fundamentalist or otherwise), it's the sanctity of the contract.

Community good, on the other hand, is often fraud itself. Politicians love to explain that even though this new law is bad for every individual person, it's good for "the people".

Altruism is a very silly thing indeed to base any system of government or economics on, but that's a different topic.

But then I don't know why I'm arguing with a post that looks like it was written by an 8 year old. I know your shift key works: it's not just for shouting! Start sentances with a capital letter and finish them with a period: it's for the community good.

Re:How is this a good thing?

[jeffmeden]

Citation

The only legitimate job of a securities law enforcement division is to protect investors against the specific crimes of theft, fraud, and breach of contract.

I believe Ayn Rand herself argued that taxation to fund contract enforcement is not a legitimate use of governmental force, but that the service should be provided on a percentage-of-transaction basis, and used as an optional means of generating revenue.

Also see the Heritage Foundation's Sentencing of Corporate Fraud and White Collar Crimes

Yeah we aren't going to tax you, we are just going to collect a fee based on the total amount of the transaction and use it for purposes pursuant to the good of the general public.

Wow Ayn Rand has done it again! She solved taxation!!!!!!!!!11oneoneoneelevntybillion

Re:Darn

[Locke2005]

I kid about ol' Rush... in reality, its nice to see a man that is so obsessed with the sanctity of marriage that he has successfully completed 3 of them, and is now starting on his 4th one!