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Pictures later; I'm lazy.

Patrick Swayze died yesterday after battling pancreatic cancer - by all accounts, he survived longer than expected, probably through a combination of his own genetics and the experimental chemotherapy he was trying. Best of wishes and deepest sympathy to all his family.

By great coincidence yesterday, the blog Respectful Insolence did a post about an "alternative" therapy trial on pancreatic cancer therapies that did not turn out so well for the CAM (Complementary and Alternative Medicine) side.

I work for a foundation that does medical studies. We are bound by endless regulations that govern our treatment of the human beings who participate in our studies (animal studies have endless regulations, too, but we don't do animal studies), because it is well understood that we cannot cause harm to patients in our care, even if it means it is harder to test new therapies. The examples in the US alone of the Tuskeege Experiment and studies where radioactive material was injected into people (to study the effects of radiation poisoning) without their knowledge or permission (including special needs boys) should be warning enough that the need to develop new therapies does not, and should never justify unethical behaviour towards patients even if it gets quicker results.

Medicine practiced without ethics is torture.

Which is why I find it so hard to understand how the Gonzalez study ever got past any IRB (Independent Review Board); at least it was stopped early, when the alternative treatment was found to be no better than no treatment at all, but 32 people still suffered, and that is unconscionable. At a time when they were already sick and in pain, they were further subjected to coffee(!) enemas, massive numbers of pills, and a restrictive diet that increased their chances of malnutrition (a signifcant predictor of poor survival in cancer patients). The doctors that participated in this trial should be ashamed of themselves.

I am not a person who believes that medical advancement should be religiously approved; the idea that all scientific progress should first be run by some nebulous Big Guy In The Sky for approval (God's own IRB, I guess) is laughable. But, contrary to what the more fundamental of the fundamentalists try to claim, ethics is not predicated on religion, but on the humane treatment of all beings on the planet (not to mention the planet itself). Knowledge is good, but knowledge obtained at the expense of needless pain is tainted. We owe it to future generations to keep our work ethical. This does not mean no pain, but it does mean that every study, at every point, must be carefully vetted and held to internationally agreed-on standards of patient care.

(I'll even Godwin myself and point out that the Nazis did some interesting medical experiments, including being the first to link lung cancer and smoking, but that doesn't even begin to justify the intense and horrific torture they put their "patients" through. They also tried to breed women with German Shepherds. Fuckers.)

I'm not anti-animal testing, either - in the absence of viable alternatives, animal testing is one of the few living tissue ways we have of testing new life-saving drugs - but I'm deeply against animal testing "just because". Ethical scientists tend to agree with this view, not to mention that it is very poor science to randomly do horrible things to animals to see what happens.

When people ask "what's the harm?" in response to criticism of CAM therapies, the results of the Gonzalez study (and others like it) should show very clearly what the harm is - Patrick Swayze, if he had decided to forgo the chemotherapy that likely extended his life and instead tried the Gonzalez protocol, would have died sooner, in horrible pain (the guidelines of the study required the non-use of analgesics for the CAM group), and malnourished.

This is not medicine, this is magical thinking. It's great that we have clever brains that come up with all sorts of interesting theories, but those theories need to be proved. There isn't really any such thing as "alternative" medicine; medicine of any form, once proved to work, becomes simply medicine. Everything else is wishful thinking.

RIP, Mr. Swayze. We loved you in Dirty Dancing, Red Dawn, and Road House.


( 35 brains — Leave a chunk of brain! )
Sep. 15th, 2009 12:22 pm (UTC)
In my previous career, I worked both ends of the spectrum. I started my days in research at a facility that tested only on animals (or cloned animal cells). And I ended my days doing New Drug Applications to the FDA for pharmaceutical companies. I'm not a scientist. But after years and years of typesetting print materials for academic journals and grant applications, you learn a few things.

In order for a drug or therapy trial to be viable, you don't just jump into human testing. Medical ethics prohibit the proper use of a control group (a group of patients from which the drug or therapy is withheld, for comparison, usually without their knowledge). You simply cannot withhold treatment from sick or dying people! So you don't use a control group and the clinical trials are actually less viable.

But that is WHY you do animal testing. You test in cells in media. Then you test in mice. Then rabbits. Then monkeys. All the way up the evolutionary ladder until you get to human beings. And if you've followed procedure, you shouldn't have to ask, "What will happen with this drug in humans." You'll know a lot based on your animal experiments. All you need to know in humans is the side effects, something animals can't readily report.

I am an animal lover. And don't think the fact that most dogs used in animal testing are greyhounds has escaped me either. But animal testing is necessary. It should be carried out humanely. But it is the thing that allows new therapies to be tested safely on humans.

And that's what these duffuses at CAM don't do -- they don't follow the proper testing procedures. If they did, they wouldn't have made it past mice!
Sep. 15th, 2009 12:54 pm (UTC)
Yup. In many cases, they wouldn't make it past protoplams - homeopathy, for instance. :)

I like my vitamins and I like my nice soothing smelly stuff, but I like it because it smells nice, not because it has magical powers.
(no subject) - kass_rants - Sep. 15th, 2009 01:58 pm (UTC) - Expand
(no subject) - petranella - Sep. 15th, 2009 04:43 pm (UTC) - Expand
Sep. 15th, 2009 12:25 pm (UTC)
You know, the coffee enemas thing surprised me... A) Because they were'nt allowing those patients analgesics but they were going to allow them to absorb caffeine through the rectal linings (sort of defeats the purpose of the "de-tox") and
B) Cancer tends to grow more rapidly when the body is in a dehydrated state, from everything that I've read... so we're going to dehydrate the patient more?
I've known a couple of people that I've cared about who have died from pancreatic cancer, and I understand the desperation of wanting to grasp at SOMETHING different when faced with those odds...
But the truth of the matter is that there is just one certainty in life: No one will leave it alive. Better to extend your life by caring for yourself now than to grasp at straws when the situation is dire later on. JMOO, YMMV
Sep. 15th, 2009 12:57 pm (UTC)
The treatment was desperately unethical, and actually resulted in a slightly worse than no treatment outcome, most likely because of the stress, malnutrition, and probably dehydration of the patients enrolled in the CAM side.

It was stopped ahead of time because the results were so striking that it was extremely unlikely that more cohorts would alter the statistics. Once that point is reached, ethics demand that the study be stopped (all drug-related human studies have this built in) because to continue treating patients with a therapy that doesn't work is unethical, and pretty sadistic.
Sep. 15th, 2009 12:26 pm (UTC)
My aunt and one of my Mother's first cousins both died of Pancreatic Cancer. It is ruthless. My aunt was part of some kind of study, at NIH, I think, in the early-mid 1980's.
Sep. 15th, 2009 12:59 pm (UTC)
Statistically, it's the tenth most common, but the 4th most likely to result in death (per Respectful Insolence). It's a nasty one, made worse by the fact that it's rarely discovered before it's well developed.
(no subject) - kass_rants - Sep. 15th, 2009 02:00 pm (UTC) - Expand
Sep. 15th, 2009 12:26 pm (UTC)
I saw last night that he had passed and thought it was sad, I also like him in Ghost. It's definitely a cheesy movie, but he was lovely in it.
Sep. 15th, 2009 12:59 pm (UTC)
He was always lovely. Awesome dancer, too. :)
(no subject) - kass_rants - Sep. 15th, 2009 02:02 pm (UTC) - Expand
(no subject) - cathgrace - Sep. 15th, 2009 04:51 pm (UTC) - Expand
Sep. 15th, 2009 01:26 pm (UTC)
Sigh. I am amazed that the study was allowed to proceed, but glad it's being published in a respectable journal. Of course, the kind of people who peddle this garbage will just ignore it. Nothing makes me more depressed than patients who had curable early stage cancer diagnosed, then refuse chemo/XRT/surgery for their magical alternative treatments. A year later they're back in the hospital with widespread terminal cancer and upset that us evil medicine types can't fix them. Uh, duh.

No, modern medicine doesn't always work, but the whole point of clinical trials is to weed out what does from what doesn't. Part of that is accepting when the trial shows no benefit, you need to give it up...
Sep. 15th, 2009 01:32 pm (UTC)
thanks for this. as a cancer researcher I wish more people had a balanced view. I know from personal experience that in order to keep your ability to use animals there are a million hoops you need to go through, proving that the use is neccessary (that there are no non-animal models) that you are using the smallest number of animals possible (statistical modelling. we have an entire department of people who's job ths is) and that as little pain and discomfort as possible is felt (using one technique over another, even though it might take longer and give a bit more ambiguous results)

and I'm happy to do it.

I've had to pass through a picket line of people carrying signs showing puppies in garbage cans to get into my lab at the Cancer Center. and so did the little girl in the wheelchair coming in for an appointment. nice.

I am a huge proponent of the ethical treatment of animals, and I dont know any reputable scientist who is not. unhappy unhealthy animals do not give good data. Good science requires good animal care. and the body of work there lays the groundwork for moving into the clinic, where we are required to prove that not only does it work, but it works better than anything else out there.

this burden of proof is a GOOD THING. but its an expensive thing. I wish folks would realise that "evil drug companies" charge what they do (at least mine does) in order to recoup the expenses (often 10-15 years worth) of bringing a drug to market, and that each one that makes it? has to cover the cost of the dozens that dont.

but that's another rant for another day :)

Sep. 15th, 2009 02:07 pm (UTC)
Amen! Drug companies deserve to be compensated for the millions of dollars they spend researching and developing drugs and therapies (many of which fail along the way and never make the drug company a cent). I watched the substances my docs tested on mice in the lab in the early 90s come on the market as viable heart medicine in the past couple of years. That's a million hours in research time even for the smaller labs. All those people are hard-working individuals, and they need to be paid. I do not begrudge them their compensation.

It's the health insurance companies we should complain about!
(no subject) - christianet - Sep. 15th, 2009 03:17 pm (UTC) - Expand
(no subject) - ornerie - Sep. 15th, 2009 07:05 pm (UTC) - Expand
(no subject) - petranella - Sep. 15th, 2009 04:53 pm (UTC) - Expand
(no subject) - ornerie - Sep. 15th, 2009 06:56 pm (UTC) - Expand
Sep. 15th, 2009 01:49 pm (UTC)
My father-in-law died of pancreatic cancer, as did his mother. Fortunately my ex was adopted, so there's no inherited risk for my son.

It was not a pleasant way to go -- even by cancer standards. My dad had it much easier 30+ years ago with lung cancer.

I don't know what to say about the Gonzales study. I'm too boggled. Unfortunately this magical thinking: "If you eat right, exercise lots, don't smoke or drink alcohol then you'll never get fat, sick or old" is starting to become all-pervasive. I went to the ER with Bell's Palsy and was subjected to a 15 minute lecture on how I should lose weight, exercise more and take statins. The only reason it was a 15 minute lecture was because I finally got a word in and stopped it. It was completely irrelevant to why I was there and totally unnecessary.

As for the late Mr. Swayze, you forgot his masterpiece: To Wong Fu... It takes a real man to appear on-screen in a dress! He was a very class act in that movie.
Sep. 15th, 2009 03:45 pm (UTC)
I did like that movie. :)

A lot of the CAM therapies seem to be heavily driven by the idea of unspecified "toxins" that can be cleared by eating "right" and buying their expensive supplements. It's pure magic wishing.

The idea of good nutrition and being active has been a part of the scientific health repetoire for years - we just need to get them realizing that one can be healthy and fit without losing weight. @_@
(no subject) - hugh_mannity - Sep. 15th, 2009 04:44 pm (UTC) - Expand
(no subject) - shadowsong - Sep. 15th, 2009 10:32 pm (UTC) - Expand
(no subject) - pinkleader - Sep. 15th, 2009 04:36 pm (UTC) - Expand
Sep. 15th, 2009 01:53 pm (UTC)
Here, here. I interviewed with Pharmacia for a position as a Regulatory Affairs manager something like 8 years ago. The interview team and I went our separate ways in mutual respect. They wanted to try to get me on their team - in another job. I was so not into the hoops-jumping flying-to-DC meeting with the FDA stuff they wanted.

But I will say the 8-hour team rotational interview process was enlightening, to say the least. And I've agitated for years to get my Vet School Alma Mater to require a Bioethics course for admission. So far, they insist that too few schools offer it to make it a requirement. *eye roll*
Sep. 15th, 2009 02:38 pm (UTC)
Strangely enough, I spent part of yesterday with the 'No one puts Baby in a corner' scene of Dirty Dancing running around in my head. I then came home and found out that Patrick Swayze had died. Something in the ether I guess...
Sep. 15th, 2009 03:08 pm (UTC)
I love Orac.

You're looking at the IRBs in this? Some of them will just rubberstamp anything (as the House Subcommittee on Oversight showed in their investigation of Coast), there really is no HHS oversight on them. The company sponsoring the study pays for the review, the ethical IRBs will do their jobs; but there are just enough bad apples to taint the barrel, as Coast showed.
Sep. 15th, 2009 03:47 pm (UTC)
Which is so infuriating - our IRBS (and the ones a friends works with) are super strict, and won't allow anything questionable to slip by (we get audited every couple of months, and have to provide all sorts of reports to maintain our protocols). I think a lot of the reason why this protocol got passed had to do with political clout. I would hazard that's a problem with a number of cases.

The only thing to do is keep bringing the horrible things to light.
(no subject) - christianet - Sep. 15th, 2009 03:58 pm (UTC) - Expand
Sep. 15th, 2009 03:15 pm (UTC)
Yeah, it's a nasty one. IIRC (without reading the article) the average survival time after diagnosis is less than six months, sometimes just a matter of weeks.... Much sadness.
Sep. 15th, 2009 07:16 pm (UTC)
Okay, I've got a few questions here; my daughter is an extremely brittle diabetic (it doesn't run in my family, she's adopted), and she's been through liver cancer twice and pancreatic cancer once. Last Monday, she was still considered to be in remission, but from everything I'm reading here, that's not going to last much longer. She's 34. Am I reading your comments here correctly?

My degree is in Biology, and we already knew that she was living on borrowed time, so if you choose to answer me, it's okay to be honest.

Sep. 16th, 2009 02:05 pm (UTC)
I am very very sorry. Pancreatic cancer, if it's not resectionable (operable in some form) has a very poor prognosis. If she's been through surgery and is in remission, though, her prognosis is a lot better.

I am not a doctor - keep that in mind. :) I suggest looking up pancreatic cancer sites to see what other survivors and patients have to say.
Sep. 15th, 2009 10:38 pm (UTC)
Ugh, ANY of these "Detoxification" methods send chills down my spine. The idea that the body is hiding these mysterious, never-identified "toxins" in its deep, dark recesses and ONLY THIS NON-FDA APPROVED NON-MEDICINAL ONLY SOLD IN BULK VITAMIN STORES WILL CURE IT is just terrifying in how many people buy into it.

There's such a difference from holistic remedies based out of science (some might have come about from trial and error, but have been backed up since with the whys and hows by science) and people just deciding to stick stuff places and see what happens.

The fact that so many of them prove to be harmful to the person using them, just... seriously, wtf!

I know I'm pretty seriously biased, but that's just so horrible.
Sep. 16th, 2009 02:06 am (UTC)
I can't claim originality on this, but it's my favorite response to detox-- The body typically detoxes itself- it's called peeing and pooping. drink a glass of water and eat a bran muffin; wait a few hours and detox with a bad magazine!
( 35 brains — Leave a chunk of brain! )

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