Somehow, in all the blogging about dichloroacetate earlier this week, I somehow missed a mention of a truly annoying thing that the editors of Lancet Neurology did. In essence, they allowed ethically challenged mercury warrior Mark Geier a forum to review Richard Lathe's book Autism, Brain, and Environment.
Egads! How desperate wer the editors of Lancet Neurology for reviewers, that they'd let the biggest mercury-autism crank of all sully its pages with a dubious review of a rather fringe book?
Fortunately, Ben Goldacre's on the case. Money quote:
As I say, I'm not hostile to people like Geier having a voice. And the idea that there might be a biological cause, or treatment, for autism is a seductive and interesting one. All I ask is that when you take someone as far out as Geier, and bung him in an academic journal reviewing a slightly maverick book, you owe your readers a tiny bit of a warning.
Indeed. Anything written by Mark Geier about autism, mercury, chelation therapy, or hormonal blockade as a "treatment" for autism should come with a disclaimer and warning.
When I read "Geier" and saw the bowel clearing diagram, somehow the universe made a bit more sense.
Bad Science nails it and him. Thanks for the link.
I see, youre a science cop, one that makes everyone obey the FDA's rules for all the treatments that don't have hundreds of millions of dollars behind them to go through FDA trials. While DCA goes through those trials, a non toxic substance by comparison to todays chemotherapy, how many million people will die of cancer worldwide. What about after the doctor gives up on the patient and tells him to go home and die,, considering that the patient can still understand him, move, think, converse,, should the patient then be allowed to spend his remaining 1-3 months to try to heal himself? Or should that still be against the law? Life Liberty and the Persuit of Happiness? Bullshit.
Clinical trials for DCA are a no-brainer, and I have absolutely no doubt that they will happen. You seem to think nobody would want to spend money on studying the drug. Why not? It's relatively cheap and should be fairly straightforward to study.
Given that, the only logical reason to not want trials would be if you think it will fail to be proven safe and effective. In which case, why on Earth would you want to give it to anybody?
Science cop? Forget science; it's ethics that Orac is championing here, and common sense. Nobody knows how much DCA needs to be taken to be effective. Nobody knows at what level it becomes toxic. Nobody knows whether or not it has any side effects, or whether one can develop a tolerance. Nobody knows whether it will have the same remarkable results in humans as it does in rats. Before wasting the incredibly precious time of people with cancer (who really cannot afford to waste time on a useless treatment), you need to know what you're doing, and with DCA, nobody knows that yet.
And don't put words into Orac's mouth and then counterargue those -- that's called a strawman, and it's disingenuous. He's not saying it should be against the law for a patient to try to heal himself. He's saying it should be against the law for people to milk the wallets of the desperate by peddling false hope that delays them from seeking real treatments. He's seen people die because some possibly-well-meaning charlatan sold them on an unproven remedy for cancer, costing the patient not only a lot of money but valuable time until it was too late for the actual proven remedies to do anything beyond attempt to relieve the pain in their last months.
There is tremendous money to be made off of DCA, and tremendous hope for it as well. That is precisely why testing is necessary. This is the perfect situation for horrendous abuse, and that's what the FDA is there to prevent.
Robert, I won't pretend to speak for Orac but I am married to a medical oncologist. Having to tell a patient there is nothing left that medicine can do is one of the most emotionally-trying and heart-wrenching things these professionals have to do. Doctors never give up on patients; they just run out of choices or the cancer has evaded the therapies we have.
The second most heart-wrenching thing oncologists face is when their patients fall prey to misleading marketing hucksters who offer false hope, or results based on premature or incomplete data. That's why I wish that DCA is tested thoroughly and in the appropriate controlled settings - any new drug in the cancer treatment armamentarium will be welcome. But, at present, it is nothing more than the hundreds or thousands of other agents under testing, 9 out of 10 that will fail to show the activity in humans that they did in animals. To offer false hope with DCA, especially under the guise of a veterinary drug, is unethical and is the primary reason laws were passed in the US beginning in 1906 to help protect unsuspecting patients from doing more harm than good.
Science cop? I started my blog to counter the misleading and sometime fraudulent marketing tactics by those who prey on desperate patients and their families, particularly those with cancer, HIV/AIDS, and pediatric disorders. While this thread has drifted back to DCA, the Geiers are perfect examples of those whose practices are in need of policing.
You say that as though it's abad thing, "Robert."
In any case, you overestimate my power. I'm just a surgeon-scientist with a dislike for people like Heather and her stepfather who take advantage of desperate cancer patients and lie about what they're really doing. I use my blog to publicize that dislike. If I prevent a single patient from falling for pitches from unscrupulous "entrepreneurs" like Heather, that will be reward enough. And if I can get enough people to report these clowns to the FDA and FTC to the point where they're actually investigated and shut down, so much the better.
Just because a patient is dying doesn't mean that their situation can't be made even worse by taking ineffective or harmful unproven drugs. In the case of a drug that proves harmful, these patients lose precious time in which they can still have a high quality of life because of the effects of the drug. Palliative care, although it may not prolong life by much, can prolong the window of high quality of life. In the case of an ineffective drug, considerable money and, the most precious commodity of all for a terminally ill patient, time can be wasted pursuing ineffective drugs.
Our system of regulating drugs is highly imperfect, but it's far better than the wild west approach that you seem to advocate.
Robert,
How about staying on-topic rather than being a DCA touting troll? Question - you think it's a good idea for the Geiers (who are not experts in autism, toxicology, or, well, just about anything) to promote chelation and chemical castration as a treatment for autism? Do you think parents should be able to give Lupron to kids (against all medical indicators) under the guide of "health freedom"?
I'm not going to hold my breath for an answer to this one.
Actually, that's a very good question, particularly given that autism is not a fatal condition, as metastatic cancer usually is. Therefore, the whole risk-benefit equation is different, and the "dying patients should be allowed to take any risk" argument flies out the window.
Orac,
Perhaps you haven't been paying close attention to the rhetoric coming out of "autism-is-mercury-poisoning" pundits like Geier and Geier (and countless others, sadly enough). These folks do see autism as a life-threatening, fatal illness. Even worse, they see it as a fate worse than death, warranting any intervention, regardless of risk.
One of my biggest concerns about the movement to allow patients with "life-threatening" illnesses to have access to "experimental" drugs (in Phase II studies or later) is the definition of "life threatening". Look to see that definition "morph" and expand much the same way that the definition of autism has. I would not be surprised to see autism declared a "life threatening" illness - in fact, I would be terribly surprised if it were not.
On a related issue, it appears that Lancet is having trouble with its editorial staff. First Wakefield and now Geier. Who's next? Michael Behe?
Prometheus.
Not only is autism not fatal, but many autistics like being autistic. The risk-benefit equation is different indeed.
I heard of a hypothesis that sticking an H-bomb up the patient's bum and detonating it will cure otherwise untreatable cancers. Should this treatment be tried? If it isn't, the patient will die, so there's no harm done by trying...
Lancet = overrated
Seriously, I know exactly what Joseph and Prometheus are saying. I want someone like "Robert Smith", who advocates health freedom and whatnot, to tell me that it's ok (or not ok) to give autistic kids chelating and chemical castration drugs that are technically FDA-approved.
Autism isn't fatal, but many have died because they're autistic. Some of these quacks are helping that right along.
There are those desperate parents (we all know one who blogs) who will try anything to rid themselves of "The Scourge of Autism" which killed the perfect child that they expected to be born to them. The treatments they subject their children to are meant to resurrect that child.