Slumming around The DCA Site (TheDCASite.com), appalled at what I’m finding

Yesterday, I wrote about how anti-science pro-“intelligent design” kook extraordinaire Dave Springer (a.k.a. DaveScot) has taken to promoting dichloroacetate as a treatment for cancer and one website in particular, The DCA Site that claims to exist to “help inform people of the exciting research done on DCA [dichloroacetate] by scientists at the University of Alberta. In January 2007 a team of scientists at the University of Alberta published a paper in the scientific journal Cancer Cell describing the discovery that a simple, cheap molecule, DCA, worked to reactivate the apoptosis mechanism of cancer cells, causing rapid shrinkage of tumors in rats. Mitochondrial reactivation represents an entirely new approach to treating cancer.” I noted that, despite its claims, The DCA Site appears to exist mainly as an advertising site for another website owned by the same people, BuyDCA.com. Worse, it appeared to be encouraging desperate people dying of cancer to experiment on themselves with the drug.

Curious, last night while I was sitting on my couch watching Dirty Jobs, I decided to emulate the host Mike Rowe and poke around The DCA Site some more. Now that‘s a dirty job! I was appalled at what I found on the chat boards. Besides the examples of two patients trying DCA with no medical supervision, I found a truly disturbing exchange between Heather Nordstrom, one of the people who put the site together, and a person challenging her over the ethics of selling DCA under false pretenses to desperate patients. First, a challenger, a guy who goes by the ‘nym Sprite8, asks some good questions:

My questions to you are these:

1) Distribution of the DCA is one thing. Will there be instructions on use (for the “pets/animals” who are in need of it) also distributed?

2) How are you able to secure DCA when so many others are not? Is it possible for anyone to get DCA through a veterinarian or other form of distribution? I’m wondering how you are able to get this.

The main reason for my second question is– how are these people who are clinging onto the hope of DCA be assured that it is legitimate and not another scam trying to secure money from desperate people?

Believe me– I hope to God that you are legitimate. But let’s face it, we’re talking to computer screens here.. and we’re surrounded by scam artists and junk mail and phishing all the time these days. How can anyone be sure that you aren’t just distributing water with something like fluoride in it to make a quick buck?

How indeed can one be sure that Heather is legit? Answer: One can’t! There’s no way of knowing whether or not BuyDCA.com is anything other than a huge scam designed to sell the drug to desperate patients. Heck, there’s no good way of knowing whether the chemical being sold at BuyDCA.com is even what it is claimed to be. Indeed, the whole “cancer treatment for pets” angle is so risibly transparent a ploy to try to weasel out of FDA scrutiny that it would, I hope, give even the most desperate dying patient pause. But, to be fair, let’s look at Heather’s response:

In my opinion, it is not that difficult to get, but that may be because my step father has connections with manufacturers since we invent and sell tools for our family business. We know of a chemical company in China that makes DCA. It is pharmaceutical grade. More information on the quality and source will be posted on the website that sells it.

Suuurre, it is (pharmaceutical grade, that is), Heather. We all know how pure a lot of Chinese herbs are that are supposedly “safe” for human consumption. In reality, they’re all too frequently full of lead and other toxic heavy metals. Does anyone want to trust whatever source from which Heather is planning on getting her DCA to be true, pure, pharmaceutical grade DCA? Not me. Who’s going to assure that it’s pharmaceutical grade, Heather or her stepfather? What qualifications do they have to do that? Analyzing a chemical to make sure that it’s pharmaceutical grade requires considerable skills in analytical and medicinal chemistry.

It gets worse, though. Get a load of Heather’s reasoning:

I absolutely understand your concern about scams and quackery. I am not sure how to “prove” we are truly interested in people’s health and finding a cure. Perhaps sharing more about ourselves will help.

My stepfather’s good friend and dance teacher Paul (his story is posted here) has lung cancer. He was diagnosed with only a few months to live. My stepfather did research into everything he could to save his friend’s life. He found Tetrathiomolybdate in the process which stopped Paul’s tumor from growing. Paul is now living with a tumor long past the date he was “supposed” to.

I work with my step father Jim, mother, sister and brother at a family-owned local business here in Sonora, CA. There isn’t anything we have to hide.

Ah, the usual testimonials, a very good sign that you’re probably dealing with a product or treatment that’s not on the up and up! Again, what one has to understand is that estimates of survival times after a diagnosis of cancer are a very imprecise science/art. Significant percentages of patients will live considerably longer than the estimate given them. If these patients happen to be into “alternative medicine,” they are inevitably the patients who turn into “testimonials.” The ones who live shorter than predicted or suffer nasty complications are, of course, forgotten, particularly if they died while taking alternative medicine. And, par for the course Heather believes desperate cancer patients deservehealth freedom” (translation from altie-speak: the “freedom to pursue woo”):

When Jim told me a week ago about his idea to promote the education of DCA, I told him that I didn’t personally don’t believe in a bullet cure to cancer (for animals or people), because cancer is something that forms from a lifetime of toxic living and abuse to the body, mind and spirit. So, I didn’t agree with his idea. However, I read the research and I decided that is not up to me to tell people what to do. We are free and I am a supporter of freedom of choice. The research stands alone. It is up to people assume responsibility for anything they may risk and I do believe that it is a risk for several reasons, mostly being that there haven’t been studies in people for various types of cancer. If people want to consider DCA then they need to realize they are completely responsible for their own choices; they need to educate themselves and make their own decisions. I believe that cancer grows in the first place because of our ignorance about how to be healthy, and finding a cure must include learning to take the time to educate oneself and make the life adjustments as necessary. I have been studying holistic health for the last 10 years and I understand the process of health and disease enough to know that it is very misunderstood by most people.

Heather managed to swallow her “doubts” about selling DCA pretty fast, don’t you think? Yes, people have the “freedom” to “choose” DCA, and there she is, going right into the breech to provide it for them. Pretty idealistic and selfless of her, don’t you think, particularly when there’s green stuff to be made? Of course, Heather justifies her unethical actions by pulling out one of the oldest altie tropes, perhaps the one with the best propaganda value of all: the appeal to “health freedom.” In the U.S., which values personal freedom and responsibility based on the very history of its foundation, this is a powerful appeal. However, here’s the problem with “health freedom.” When used in this context, it’s usually anything but a true appeal to freedom. Usually, in altie hands, it’s a strategy to draw attention away from the unethical and dangerous actions of irresponsible sellers of unproven drugs (like Heather) and towards the patient, for whom we all have sympathy, including us skeptics who like evidence-based medicine. It may also be a way for people like Heather to cloak their unethical and dangerous actions, which are likely to harm far more cancer patients than help, in the mantle of “freedom.”

In any case, it’s not surprising that Heather would take this sort of view. A quick Google search turned up this article by a Heather Nordstrom of Sonora, CA (who, I’m pretty sure based on the city and the writing style, is the same Heather as the one from The DCA Site) about a trip to Tijuana she made to see an “alternative dentist” who “had even worked for Hulda Clark!” The purpose of her trip was to remove the amalgam fillings from someone named Josh (who, I assume, is her son), after which Josh undertook a typical altie “detox plan” to “rid himself of the remaining mercury.” In the article, Heather gushed about the “alternative medicine” clinics in Tijuana thusly:

I write this information because more people need to know. Especially people in the US and any modern medicine practicing country, because our health (more truthfully, lack of) is a major money-making industry. I might offend some people with my point of view, but I believe that some of our practices make people sicker and eventually kill them. Many US doctors decide to practice in Mexico because of the difficult conditions in the US that hinder or prevent them to successfully cure and treat disease. The US’s general approach is “allopathic” which is aimed at the disease, rather than “naturopathic” which is focused on the whole person and their lifestyle, to determine what caused the disease and bring the body back into balanced health.

And:

Mexico is a refuge for those who want to practice natural and alternative medicine without persecution, and those who seek highly successful and non-harmful treatments for what US doctors call “incurable” disease.

No, it’s not, Heather. It’s a refuge for quacks selling ineffective and often dangerous nostrums. Also, having worked for a quack like Hulda Clark is nothing to be proud of! If a healthcare practitioner told me that he had ever worked for “Dr.” Clark with anything other than the deepest shame at admitting such an embarrassing tidbit about his past, I’d be running, not walking, out of his office.

Spirit8 was not alone, however, in warning Heather about the dangers of what she is doing, fortunately. A man by the ‘nym of CJohn Zammit also tried to warn her:

Heather, it is admirable that you are keen on DCA … BUT what you are doing is highly unethical and very likely illegal.

DCA cannot exist in isolation. No one can supply you with DCA.

The stuff used by the researchers is SodiumDCA, and while it has been used on humans for a long time, and its side-effects are well-known, it is NOT a do-it-yourself thing.

It needs medical supervision.

For heaven’s sake, do not sell it to the public. Try to bring it to the attention of your local hospital’s oncology department; show them all that has been written about it. Persuade them to use it on their patients.

I know the pain of having cancer or losing someone dear to that dreaded disease … I lost my wife.

I tried to e-mail you from your Contact link, but it bounced back.

[…]

Together, we can raise the awareness and put pressure on the medical profession to start prescribing this simple drug.

But doing it yourself is not the answer.

Sensible words, except for the part about encouraging oncologists to use DCA outside of clinical trials. What Heather and the other purveyors of false hope at The DCA Site are doing is indeed highly unethical and breathtakingly irresponsible. It’s disingenuous as well, given the painfully obvious subterfuge of selling DCA “only for animal use” when anyone with half a brain (or even those with less than half a brain, like DaveScot) can see that the DCA is being sold to be used by desperate cancer patients. It’s all done with an incredibly blatant “wink, wink, nudge, nudge” disingenuousness that disgusts me. Sadly, Heather’s reply is more of the same “health freedom” blather:

My family is promoting the education of DCA because I believe we have too much (too many lives) to lose if we wait for trials to begin and end. The bottom line is that people should be free to choose for themselves. What is illegal is selling DCA for human use. We have been talking with the FDA and making sure we are staying within their guidelines. If people want to take it for themselves, that is completely their choice and they must accept responsibility.

“Talking with the FDA”? I wonder what Heather and her stepfather have really been telling the FDA, if they’ve been in contact with the FDA at all (which I sincerely doubt). If it was the truth, my guess is that the only thing the FDA would respond by telling them that selling DCA under such an obviously false pretense could get them in trouble with the law. And, really, Heather can’t really believe that this disingenuous disclaimer will shield her from prosecution or liability, Can she? Here it is:

For veterinary use only. DCA is not approved for use by humans. We are neither doctors nor veterinarians and cannot make statements about the medical condition of your pets. Please note we make no claims nor give any guarantees. The information on this site should not be considered complete, nor should it be relied upon to suggest a course of treatment for a particular individual. This information is for educational purposes only. It should not be used in place of a visit, call, consultation or the advice of your physician or other qualified health care provider, or veterinarian. Always consult with your physician or veterinarian before embarking on a new medical treatment, diet or fitness program.

Funny, I thought BuyDCA.com was selling DCA for use in animals only. Why, then, are Heather and her family making such a big deal out of mentioning physicians and treatments for individuals? It couldn’t be that Heather and her stepfather are being, as I said before, disingenuous, could it? You’re far too cynical; Heather is an idealist, after all. Fortunately, CJohn Zammit is not done yet and he echoes exactly what I said about Chinese suppliers:

Now, a few words about why you should NOT sell this drug.

You have indicated that your source is in China. I have had a lot of experience dealing with Chinese manufacturers. In a number of cases, I find that my language means different things to them. I will not bore you with tales of woe.

In the case of this drug, if you have ordered “DCA”, chances are that you will receive Dichloroacetic Acid, often referred to as simply DCA. I would not want to give that to even my worst enemy.

There is a lot of confusion about DCA — Dichloroacetate. On its own, it cannot exist (I am paraphrasing Benjamin Abelow M.D., author of the famous book, Understanding Acid-Base). For human use, it is mated with Sodium, thus what you get from your doctor is Sodium Dichloroacetate (Molecular Formula: Cl2CHCO2Na), which has been proven effective in the treatment of congenital lactic acidosis and other mitochondrial disorders…Importing this drug, for human use, requires that someone in the importer’s organization is fully qualified to check the authenticity of the imported product. That means a well-equipped laboratory, and certified professional(s) to carry out an analysis of the compound. Unless you are so equipped, then, I suggest to you that, you are not in a position to sell this drug.

Stick to publicizing it … and if I may add, you are already doing a fabulous job in that respect. Keep it up.

[…]

Urging oncologists to use the drug, does not mean to imply that anyone should take it on themselves to use it. True enough, it is a simple drug, but how do you know that what you are taking IS the drug that you seek? You don’t! Just ask yourself, just because you are dying, would you take poison? I don’t think so.

Sadly, this drug, unless used by the medical profession, is a magnet for quacks. And that would be a disaster, because not only will patients not be cured, the drug will get a bad name and be relegated to the trash can. We cannot allow that to happen.

Obviously, I disagree with encouraging oncologists to try the drug for their patients on a compassionate use/”off-label” basis without at least some convincing Phase II data to support such treatment. I also disagree with his violent criticism of the researchers at the University of Alberta for Evangelos Michelakis, the scientist who published the Cancer Cell article showing the activity of DCA against experimental cancer in rats for “sitting on it for two years” (not quoted), nor, obviously, do I agree with his hysterical demand that the drug should be made available to medical professionals, who should be encouraged to use it. (Never mind that not very many physicians would be willing to risk malpractice suits and the loss of their medical license by using a drug that is not FDA-approved.) However, I do agree 100% that DCA appears to have become a magnet for quacks. Unfortunately, the situation is likely to worsen. I also totally agree that Heather’s company appears utterly unqualified to import DCA. She clearly can’t verify the content and purity and has no clue how to use it.

Indeed, how can anyone doubt that Heather’s basically lying through her mercury-free teeth when she says, “We are not selling it for human use although people may do what they will”? Come on! Give me a break! Also, just because Heather claims to have “biologists and chemists” does not necessarily make them qualified to determine whether the DCA they “import” is pharmaceutical grade, even if it’s true that there are biologists and chemists working for her stepfather. Finally, I’m really surprised that no one appears to have picked up on the fact that there’s a huge contradiction between what Heather says on the forums on The DCA Site and what is written on the BuyDCA.com website. In the forums, she claims to be planning on importing DCA from a Chinese supplier. Yet, on the BuyDCA.com website, this is what they have to say about how they make their DCA:

We make Pet-DCA from Dichloroacetic acid, 98%. Dichloroacetic acid is synthesized by mixing the precursors and hitting the mix with a laser tuned to a particular frequency. 98 percent of the resultant product is dichloroacetic acid, 1% monochloroacetic acid and 1% trichloroacetic acid.

Our synthesis of sodium dichloroacetate produces the same aqueous (water) solution you would get when dry sodium dichloroacetate is added to water. And for much less money.

This sounds fishy to me. I could be wrong, but best guess is that she’s getting dichloroacetic acid, not its sodium salt (sodium dichloroacetate) from her supplier and then planning on somehow neutralizing it with sodium hydroxide or some other base. I could be wrong, though; so I ask: Which is it? Are they “importing” pharmaceutical grade DCA from China, or are they making their own homegrown concoction out of dichloroacetic acid? Inquiring minds want to know!

Not surprisingly, Heather also harbors some rather typical altie misconceptions about cancer therapy:

Nobody is allowed legally to sell DCA for human use except doctors because the FDA has made it illegal for ANYONE to claim they can cure cancer in humans except through things like chemotherapy.

I’ve got news for Heather: DCA is chemotherapy! The difference is that it’s chemotherapy that hasn’t been scientifically shown to be effective against cancer in humans. So, basically, Heather is a chemotherapy peddler. Yes, indeed, she’s enthusiastically peddling chemotherapy developed scientifically through that evil “allopathic” medicine for which she voices such contempt! There’s no getting around that fact. Worse, in my opinion, it’s very hard not to conclude that Heather’s not just an allopathic chemotherapy peddler but a lying peddler of unproven chemotherapy who’s intentionally deceiving people by claiming to be selling it only for animal use when her own words quite clearly show that she knows damned well that people won’t be buying the DCA for their pets. Perhaps she thinks she’s doing this all only out of the highest ideals and that lying about not selling DCA for use in humans is acceptable in the service of a higher cause if it keeps “the Man” off her back. Perhaps. But, as they say, the road to hell is paved with good intentions, and, quite frankly, I’m beginning to doubt whether Heather and her stepfather’s intentions were ever all that good in the first place.

This is what DaveScot has wrought. Apparently Heather’s stepfather learned of DCA from Uncommon Descent and was so inspired by it that he set up his “educational” website, which is in reality disingenuous, intentionally deceitful about its true purpose, and utterly irresponsible. Worse, Heather is stoking the very flames of false hope that I’ve warned about before, as this person commenting describes:

Of course, the other issue is that the pharmacists who carry the stuff, are having a difficult time keeping it stocked because there is so much interest since the University of Alberta article. The pharmacist I used has just a small supply on hand now but is waiting for a larger shipment to come in from the UK but it may be a month or so. But even so, I strongly urge you to get it through a prescription and a reputable compounding pharmacist – you can not be sure exactly what you are getting if you just order it over the internet – it may not even be DCA and it could be harmful to you, and even if it is DCA, you can’t be certain of the grade or purity and then you can’t possibly know what dose to use.

This is madness, people, for reasons that I’ve amply described before in my usual long-winded fashion. In any case, if you want to see how much Heather wants to “help people”? Check out the rest of the disclaimer:

To insure the product is safe for all buyers, there can be no refunds or returns. All sales are final.

The sad thing is, in the end, after all the right Phase II trials are done, DCA might actually prove to be legit. It might actually prove to be an effective new chemotherapeutic agent with activity against a wide variety of human cancers (although, I must point out again that it is highly unlikely to be any “cure” or miracle treatment). The preclinical data in cell culture and rats are promising. But we won’t know whether its activity in cell culture and in rat tumor models will translate into an effective human therapy until the clinical trials are completed. While that’s happening, we have idiots like DaveScot and opportunistic “entrepreneurs” like Heather Nordstrom’s stepfather doing their best to sully DCA by making it look like another Laetrile, all the while claiming to be “helping” people.

ADDENDUM: Walnut has posted his critique on Daily Kos as well.

All Orac posts on DCA:

  1. In which my words will be misinterpreted as “proof” that I am a “pharma shill”
  2. Will donations fund dichloroacetate (DCA) clinical trials?
  3. Too fast to label others as “conspiracy-mongers”?
  4. Dichloroacetate: One more time…
  5. Laying the cluestick on DaveScot over dichloroacetate (DCA) and cancer
  6. A couple of more cluesticks on dichloroacetate (DCA) and cancer
  7. Where to buy dichloroacetate (DCA)? Dichloroacetate suppliers, even?
  8. An uninformative “experiment” on dichloroacetate
  9. Slumming around The DCA Site (TheDCASite.com), appalled at what I’m finding
  10. Slumming around The DCA Site (TheDCASite.com), the finale (for now)
  11. It’s nice to be noticed
  12. The deadly deviousness of the cancer cell, or how dichloroacetate (DCA) might fail
  13. The dichloroacetate (DCA) self-medication phenomenon hits the mainstream media
  14. Dichloroacetate (DCA) and cancer: Magical thinking versus Tumor Biology 101
  15. Checking in with The DCA Site
  16. Dichloroacetate and The DCA Site: A low bar for “success”
  17. Dichloroacetate (DCA): A scientist’s worst nightmare?
  18. Dichloroacetate and The DCA Site: A low bar for “success” (part 2)
  19. “Clinical research” on dichloroacetate by TheDCASite.com: A travesty of science
  20. A family practitioner and epidemiologist are prescribing dichloracetate (DCA) in Canada
  21. An “arrogant medico” makes one last comment on dichloroacetate (DCA)

Posts by fellow ScienceBlogger Abel Pharmboy:

  1. The dichloroacetate (DCA) cancer kerfuffle
  2. Where to buy dichloroacetate…
  3. Local look at dichloroacetate (DCA) hysteria
  4. Edmonton pharmacist asked to stop selling dichloroacetate (DCA)
  5. Four days, four dichloroacetate (DCA) newspaper articles
  6. Perversion of good science
  7. CBC’s ‘The Current’ on dichloroacetate (DCA)