With the recent passage of President Obama's health care reform bill, I can only hope that we as a nation have finally begun to address what has been a serious problem in our health care system, namely the unemployed. Although I remain somewhat skeptical of the plan as passed and remain largely agnostic about it, as a cancer physician I can't help but hope that it actually does some good. Although I can say that I have yet to see a patient with breast cancer who wasn't able to get treatment because of lack of insurance, I have seen a lot of difficulties thrown into their paths. For instance, in my particular state Medicaid won't kick in until a diagnosis of cancer is made. The problem is that, just in my practice alone, I've seen several patients over the last year who couldn't afford to get the biopsy necessary to diagnose the cancer. Fortunately, the Komen Foundation has a fund that helps women like this, but, given the economic downturn, it's under enormous strain. Consequently, even at an institution whose mission includes taking care of the poor and less well-off, we have trouble meeting the need as the numbers of uninsured continue to climb.
As a consequence of this, more and more I seem to be seeing something known as the "medical fundraiser." I first noticed it last fall in a coffee house, when I saw not one but two ads, one for a woman with leukemia and one for a two year old girl with neuroblastoma, both of whom were apparently uninsured and couldn't afford their medical bills. Both flyers advertised fundraising concerts, one at a local bar and another at a local park. It was a profoundly depressing thing to see.
Unfortunately, one thing I also learned was that these fundraisers are not always about science-based medicine. In fact, a lot of them are about paying for woo and sometimes even quackery, in which case it doesn't matter whether or not a person has insurance because insurance companies quite correctly don't pay for quackery. For example, I saw this flyer at a local business:
Note what's there. While no one would have any problem with paying for speech therapy, occupational therapy, swim lessons, and applied behavioral analysis, the latter of which can be quite expensive, what's the deal with homeopathy?
Yes, homeopathy. And how is it that homeopathy is the second most expensive treatment on Colton's list of treatments for his autism? At $800 to $1,000 per month, that's some seriously expensive water! Wow! I'm definitely in the wrong business. I mean, here's a homeopath making $1,000 a month treating just one autistic patient with magic water! I guess the best that can be said is that it's not harming the child; after all, it is nothing more than water supposedly imbued magically with the "memory" of the substance formerly in it that the homeopath has diluted to nothing. However, homeopathy is wasting money--a lot of money for this child--and anyone who has contributed to this child's treatment should know that about 25% of the money is going to pure quackery that has no hope of helping the child.
What reminded me of these flyers whose photos I snapped with my trusty iPhone last fall was a story I saw the other day that I wanted to write about for yesterday, at least until grants got in the way. Entitled Friends, strangers help pay unwieldy medical bills through fundraisers article's a few days old, but I only just saw it on Sunday. it shows exactly what I'm talking about, albeit through a very credulous reporter who doesn't really distinguish between woo and science-based medicine in what she no doubt saw as a human interest story about how lack of insurance and hard economic times are pushing people to have fundraisers like these to try to pay for their medical bills:
Facing the most advanced stage of thyroid cancer and given at most five years to live, Rene Louis awoke one night last summer with a dream about how she could help others like her raise money to pay their medical bills.
Louis, 40, of Allen Park, Mich., needs to pay $14,000 up front to be treated by an alternative medicine doctor in Houston. So she started the I Promise Campaign to help her pay for it. She hopes to get nonprofit status and raise enough money to cover not only her treatment, but the medical bills of others as well.
It's not good "if you have hope and you can't get it," said Louis, referring to the treatments she wants but can't afford. She has two children, ages 10 and 8, whom she hopes to leave with "good life lessons about making good out of bad."
Louis, it turns out, is insured, but wants to pursue dubious therapies:
Given deductibles many insured people must pay before their insurance coverage kicks in, and with co-pays that mount for patients with serious, catastrophic illnesses, many Americans may need help for years to come. Others like Louis, who is insured, need help because they have insurance policies that won't pay for alternative treatments not proven as safe and effective as conventional therapies.
Obama plan or no Obama plan, it's a disgrace that, in the U.S. in 2010, many people with cancer, mostly uninsured but even those who are insured, debts that they cannot pay leading to potential financial disaster and thus feel they have no choice but to hold fundraisers of various sorts to pay for their care. Unfortunately, among this wave of people is a subset who have decided that, insured or not, they want woo rather than science-based medicine, and, for whatever reason, they're riding the same wave as the unfortunate uninsured people with life-threatening illnesses who can't pay for life-saving medical care. They're appeals that are very hard to resist, too, as this video of Rene Louis describing her plight on her website shows:
Whose heart wouldn't be melted--or at least softened--by the plea of a woman diagnosed with what is very likely terminal illness? Who among us, if placed in Louis' situation, might not feel the siren call of an unproven and highly dubious therapy whose practitioners claims complete responses in advanced cancer and gives her hope of logn term survival when conventional medicine cannot? I can't even guarantee that I would, although I like to think I would. Apparently Louis has metastatic medullary thyroid cancer. Like so many solid tumors, once it metastasizes beyond the regional lymph nodes medullary thyroid is no longer curable. In the case of this specific cancer, the five year survival rate is excellent with surgery if there are no metastases beyond the lymph nodes in the neck; once the genie's out of the bottle and the tumor has gone to lung, liver, or wherever, the five year survival is around 20%. That's why, when Louis asks the viewer what he or she would do in her situation, who among you doesn't feel your eyes welling up? Just a little bit?
Adding to the potency of the appeal is the fact that conventional medicine can't really offer Louis much in terms of therapies that will save her life (although it most certainly can offer a lot that will palliate her). Consequently, when she proclaims that the "alternative" she has found gives her hope, it produces an incredibly powerful emotional appeal. Unfortunately, the "hope" that Louis has found is not real hope at all, but false hope:
Rene found a clinic in Houston Texas that has some success with cancer treatments. Insurance companies were skeptical to the Dr's claims, putting the burden on the patient. That's when the idea of this Campaign was born. Not having the money needed for any possible treatments, Rene decided to ask for help. She went public with her plea for any assistance that could be given. Her promise was to "pay it forward", meaning any money raised over and above what was needed would be shared with others in similar situations.
She's talking about Stanislaw R. Burzynski, MD, PhD.
Dr. Burzynski is a rather difficult woo-meister to tackle for a variety of reasons. First, he really is a legitimate MD/PhD, proving beyond a doubt that having an MD/PhD double threat degree does not necessarily inoculate one from falling prey to pseudoscience. He's also an example of a brave maverick doctor (specifically the "iconoclast" type) who's discovered The One True Treatment for cancer, HIV, and a wide variety of other conditions. In Dr. Burzynski's case, his treatment of choice is something he once dubbed antineoplastons, and, like all brave maverick doctors, be they Mark and David Geier, Andrew Wakefield, or Robert O. Young, he believes himself to be a crusading researcher rather than a quack. He also gives good science-y speak in that he has many of the trappings of a reputable scientist, including publications in reputable journals. Come to think of it, that's just like the Geiers or Wakefield too, all of whom have managed to insinuate themselves into the medical literature. Like Wakefield (but unlike Mark Geier), at one time Dr. Burzynski was actually viewed as a promising young researcher. Unfortunately that time was well over 30 years ago, when he was on the faculty at the Baylor College of Medicine. It was there that he discovered what he would later call "antineoplastons."
Like many brave maverick iconoclasts frustrated with the "arrogance," "blindness," and "inflexibility" of his academic colleagues, Dr. Burzynski apparently ultimately decided that academia was not for him (or maybe the decision was made for him); so he founded his own clinic, which offers a "variety of alternative cancer treatments for patients diagnosed with over 50 different types of malignancies, including colon, pulmonary, breast, prostate, head and neck, ovarian, pancreatic, esophageal, hepatic, renal, bladder, brain, malignant melanoma, lymphoma, and many others," and research institute, which is currently described as "a biopharmaceutical company committed to developing treatment for cancer based on genomic and epigenomic principles." Apparently it's not just about the antineoplastons. Since then, it's been a life of woo for Dr. Burzynski, and of late he appears not to be publishing in anything resembling reputable journals anymore. A PubMed search reveals no publications since 2006, and the closest I find to a recent publication in a reputable journal is this report in 2004 of a single arm uncontrolled trial in children.
In any case, Dr. Burzynski first gained fame for his antineoplastons back in 1988, when Sally Jesse Raphael featured four "miracle" patients of Burzynski, who, according to her, had had incurable cancer and failed conventional therapies but were then cancer-free, thanks to Dr. Burzynski. Unfortunately, four years later in 1992, Inside Edition followed up these four patients:
In 1992, "Inside Edition" reported that two of the four patients had died and a third was having a recurrence of her cancer. (The fourth patient had bladder cancer, which has a good prognosis.) The widow of one of Raphael's guests stated that her husband and five others from the same city had sought treatment after learning about Burzynski from a television broadcast -- and that all had died of their disease. In 1995, a federal grand jury indicted Burzynski for mail fraud and marketing an unapproved drug. The indictment charged that he had billed insurance companies using procedure codes for chemotherapy, even though his treatment was not chemotherapy. He was tried in 1997 but not convicted.
Not surprisingly, in 1998, the State of Texas secured a consent agreement with Burzynski stipulating that he: (a) cannot distribute unapproved drugs in Texas; (b) is allowed to distribute "antineoplastons" only to patients enrolled in FDA approved clinical trials, unless the FDA approves his drugs for sale; (c) cannot advertise "antineoplastons" for the treatment of cancer; and (d) on his website and in promotional material his ads must have a disclaimer that the safety and effectiveness of "antineoplastons" have not been demonstrated. Obviously, big pharma got to Texas.
It also turns out that the substances that Burzynski claimed to have isolated from urine (his "antineoplastons") have never been shown to do anything in cancer by anyone other than Burzynski. As the article at Quackwatch points out, the National Cancer Institute could not replicate Burzynski's results. Neither could drug company Sigma-Tau Pharmaceuticals. Neither could the Japanese National Cancer Institute. So what we have here is a therapy that has marginal (if that) credibility based on prior probability. AFter all, it's not entirely implausible to think that the body might make substances that arrest the growth of cancer. One might even postulate that it is a deficiency in these substances that allows cancer to develop. Unfortunately, there is no evidence for this, other than from Burzynski. If there's one thing that should raise a red flag for pseudoscience, it's when only one scientist can produce the reported results and no one else can. Replication is utterly key to the acceptance of science, and if other groups could have replicated Burzynski's work I might scratch my head and say, "You know, Dr. B may be on to something there." But no one else can, and I'm left scratching my head and wondering how so many people can believe in Burzynski's results in the absence of any good science.
Faced with a consent decree mandating that he can only use antineoplastons in the context of a clinical trial, Dr. Burzynski used his institute to set up a staggering number of clinical trials. As noted by The Cancer Letter, these clinical trials failed to meet minimal standards for scientifically sound studies. How these things got approved by any institutional review board, I have no idea, unless Burzynski made like the Geiers and created his own IRB. However he did it, what he is doing is sloppy at best, grossly incompetent at worst. Here are some excerpts from The Cancer Letter:
Dr. Burzynski is studying a heterogeneous, ill-defined patient population.
He treats patients who come through the door, and only patients who come through the door. He takes patients with bony disease, liver disease, bone marrow involvement, CNS disease. He organizes data by disease site, whatever the patients' stage, and whatever treatment they received prior to walking through the door of his clinic.
What we have here are bad trials that could never get past peer review of any clinical trials cooperative group. It's not in the public interest to conduct trials that are not going to yield clear results. If you are going to test an alternative approach, you need to test it as rigorously as you do mainstream approaches.
Dr. Burzynski's protocols are written with all the trappings of protocols. They look like protocols. They smell like protocols. But they lack the rigor of protocol design that defines the patient population, defines the endpoints, sets exclusion and inclusion criteria, and allows for statistical analysis.
The protocols are evaluating a single statistical endpoint: response. He doesn't evaluate disease-free survival, time to progression, quality of life, or overall survival. With these endpoints not prospectively defined, he has no basis for making legitimate claims regarding these parameters. This is a fundamental problem: You have to set your endpoints prospectively. It's too late to go back and do it after all the patients are treated.
Dr. Burzynski presents no baseline data. He presents no control data. He presents no description of methodology employed to measure active agents in the blood. How are these values affected by other variables, such as how recently these patients have been on other chemotherapy? How many other chemotherapy agents have they had? Is their liver and renal function normal? In the absence of controls, Dr. Burzynski is constructing his controls from memory and experience, which eliminates any possibility of determining a true response rate.
One huge problem that was noted is that Dr. Burzynski's therapy requires the adminstration of so much antineoplaston as sodium salts that several of his patients developed hypernatremia, in one case as high as 180 mEq/L. (A normal serum sodium level ranges between 135 and 145 mEq/L.) Personally, I've never seen a sodium level that high in a living patient. When sodium levels get into the 155 mEq/L and up range, clinicians start to get very worried and usually start aggressive treatment to bring the sodium levels down. Worse, these are patients with brain cancer. One danger is that, in correcting the hypernatremia, sometimes cerebral edema (brain swelling) will result. That's why we generally try to correct hyponatremia fairly slowly. In a patient with a brain tumor, cerebral edema could be even more dangerous than in a patient without such a tumor. Despite reviewers being alarmed at the hypernatremia some of Burzynski's patients developed, astoundingly he still claimed that he had no "significant toxicity."
The bottom line is that Dr. Burzynski is not a miracle worker. He is not a doctor who sees something that mainstream science has not and who therefore has a cure for many cancers that mainstream medicine scoffs at. He is not a bold visionary. Rather, he appears to be a man pursuing pseudoscience. The reason that mainstream scientific medicine has not accepted the existence of antineoplastons or their efficacy against cancer is because there is no credible evidence to support this thrapy and no one other than Dr. Burzynski has been able to replicate his results.
All of this is why I'm even more sad for Rene Louis than I would be otherwise. She has been taken in, wasting her remaining time on earth pursuing $14,000 to pay Dr. Burzynski to treat her, not knowing that his treatment has never been shown in a rigorous clincial study to be efficacious against cancer. Moreover, she probably doesn't realize that this would likely be just the beginning, a down payment if you will. Yet here she is, "begging for money," as she put it, and doing it for nothing. As hard as it is to say, she would almost certainly be better served pursuing palliative therapy and spending as much time as she can with her families. I don't say this out of coldness or lack of sympathy. I say it because it's true, as hard as it is to swallow.
People can be generous, incredibly generous. They want to help. It's bad enough that a crappy insurance or lack of insurance lead people into the humiliating and desperate place of having to beg for money to save their lives by paying for science-based medical therapy. It's even worse when they beg for money for woo. Not only does it put them in the position of relying on the generosity of strangers, but they unknowingly betray that generosity. Donors want to help. They want their donation to make a difference by paying for treatment that will make a difference. Paying for homeopathy or antineoplastons for someone is not doing them any favors; all accomplishes is to enrich practitioners of dubious (at best) medicine.
"It's even worse when they beg for money for woo."
PayPal donate buttons on blogs are common and indeed worse when the parents are asking for money to pay for woo.
Dr. Burzynski ought to spend a lot of time in prison for this abuse of patients.
I've been seeing these flyers for all my life in every neighborhood I've lived in, along with ones about people needing organ or bone marrow donors... It truly is depressing. I wonder how many of those people have died because they couldn't raise enough money.
It really is a shame to see people going uninsured, and to see them being scammed so badly.
As for the insurance bit, I'm personally a fan of lifting the interstate ban; plus, expansion in the field of HSA's would be a nice touch as well.
A few years ago, a family in my hometown begged money for their young child with brain cancer, supposedly to get him to US so he could receive an "experimental treatment". It turned out that it was Burzynski's urine stuff - only the family didn't inform the people who were giving money.
I found it very fishy at the time - after all, we do have public health care here - and our standard of care are quite good, especially when it comes to children with cancer. If the family has been told that there's nothing to do by a team of specialists in our best specialized children's hospital, it's probably because there was nothing to be done. And why would they have to pay if it was a legitimate experimental treatment ? And why couldn't it be given to him here ?
Anyway, they got about 250 000$ of donations, bought a new car and got in Texas for about 3 weeks until their son got in so bad a shape that it was very apparent that he would not survive. So, after spending 25 000$ on urine injections, they got their son out of there and went to Disneyland. He died peacefully in a legitimate hospital on the US side not long afterwards. Which he could have done free of charge with his whole family in his hometown.
But it doesn't end here. There was money left. And since their story had been rather publicized (that's why they could get so much money), everybody knew it. At first, a spokesperson for the family announced that the remaining money would go to create a foundation to help other children. But somehow it never happened.
Now everybody in my hometown remembers how we have been fleeced by somebody using his sick child. It has made us a little more critical when it comes to give money out of sympathy.
sounds like Dr BURZYNSKI has all the credentials and WOO to be Chief of the Medical Staff, or Director of Physician Quality at the infamous Winkler County Memorial Hospital in the Great State of TEXAS.
Probably develop and market a line of All Natural, Organic Antineoplaston and garlic Barbecue Sauces. I hear the County Sheriff needs a new business partner?
"As for the insurance bit, I'm personally a fan of lifting the interstate ban"
You clearly haven't thought it through.
It'll be like credit cards. A few states will ease their regulations to a ludicrous degree, and the companies will flock there. With credit cards it's Delaware and South Dakota, with unlimited interest rates, etc.
Yeah, you'd get cheap insurance - that won't pay for any claims you make, and the states where they incorporate will allow that, in order to attract the companies and the tax revenue and jobs.
What's the point of doing that?
So you prefer monopolies and highly condensed oligopolies? Because they obviously provide such wonderful services at great prices!
The idea is that if I'm in Michigan, and a company in Wyoming has a plan that matches my needs, I can get it. Right now, I can't. Sure, companies will flock to states that don't rape them in the ass; they'd still offer insurance to people outside the state because it'd be fucking stupid not to (profit motive ftw!).
And how do you know the cheaper insurance won't pay for any claims? If there is more competition, you can just switch to another insurance company that does cover your needs, and like you said, it'd be cheaper. Cheap insurance that covers less is better than no insurance.
KEMIST @ comment #5
and your experience/anecdote serves as illustration yet again of the adverse effects of Woo and WOOPidity... The child was denied/delayed any actual, authentic evidence based care until terminal, health care funds donated in good faith funded a "last wish" trip to Disney ( I cannot really raise objection to that sort of thing, IF FUNDS ARE OBTAINED HONESTLY).. a new car, then missing funds, then a charity foundation that never materialized, and a community is scammed. Those in that community are now in a mindset such that the next opportunity to donate and provide for someone "legitimately" ill or in need is quite likely to NOT donate. So..the damage of WOO persists.
You are being unnecessarily rude. It's fine to disagree and have a discussion, but you are out-of-line in my grandmotherly view. I would slap the face of any child or grandchild who spoke or wrote in such a disrespectful manner. By the way, you won't know what your out-of-state plan will pay for for sure until you make a claim; then by the time you research other plans and switch, change doctors because the one you have isn't in the network of the new plan, get retested, and so on, you could be dead depending on what ailed you to begin with. Also, you could try thinking of the public health instead of just yourself.
"It's bad enough that a crappy insurance or lack of insurance lead people into the humiliating and desperate place of having to beg for money to save their lives by paying for science-based medical therapy. "
I totally agree and for that reason I wish you (and any other medical people) weren't so "agnostic" on the health care issue. Such things simply don't happen in countries that have public health care systems; nor do bankruptcies. I know you said you were agnostic about the recently passed legislation, and perhaps that doesn't extend to the basic system as well, but it would have helped during the debate if more doctors had taken a bolder and more public stance about changing the system entirely.
Thanks very much for this post. I think it is one of the best ever as it touches on so many themes--woo, insurance issues, human dilemmas.
A few weeks ago I got an e-mail from a friend asking me to attend a benefit performance of a theater piece I've seen and wouldn't mind seeing again. It was for another friend of the performer with an "aggressive cancer which is being treated with a very expensive alternative therapy," to which the friend "is responding well."
Alas, I had a previous engagement that evening, or at least that's my story and I'm sticking to it. I didn't think that there was any point in attempting to dissuade the friend's friend from enriching a quack at second hand.
. . . While no one would have any problem with paying for . . . applied behavioral analysis, the latter of which can be quite expensive,. . .
Perhaps the issue of ABA could be addressed by one of Orac's "friend's" colleagues at SBM. I have not kept up with its current status. My impression has been that the case for its effectiveness and actual benefit for the patient (rather than those around him) is not yet proven.
Reminds me of a new age woomeister I used to know who got a rare form of salivary gland cancer. Although there was a medical treatment available for it, with reasonable results, since it would involve injecting himself with "toxins" he refused it and instead opted for woo.
First they took all of the silver fillings out of his teeth, because mercury causes cancer. (In their universe, anyway.) Then he took homeopathic remedies, although much cheaper ones than in the poster; his cost was IIRC about $10 per bottle of 500 tablets, the dose being four tabs QID. Then he went on a raw foods diet, similar to the one advocated by Mike Adams. Then he went to a community group to ask for money to go to Mexico and get laetrile. They said no because he had insurance that would have paid for regular cancer treatment. Then he went for some sort of radionics treatment.
Then he died.
. The child was denied/delayed any actual, authentic evidence based care until terminal.
Actually, he was being treated in a very good children's hospital, but the medical team taking care of him had informed the parents that they couldn't do anything more. Understandably, the parents did not want to accept this, and were inclined to believe the myth that they could get a "miracle cure" in the US - if only they had money. And people here indulged them because they also believe this myth.
A lot of people here believe this way - this politician or this famous actor got better because he went to the US to get medical care. They don't seem to realize that for many famous people, it's much more an issue of privacy than of standard of care. If, for example, politician X has got AIDS, he'd much rather go in the US for treatment than have local journalists following him everywhere. He'll say he has "skin cancer" and fly to the US to get antiretroviral therapy, no questions asked.
I don't think the parents intended fraud - it would take very callous parents to intentionally profit from their own child's suffering. I think they got carried away with the amount of money they got - and they realized, once in Texas, that Burzynski was a hoax, but couldn't tell the people who had so generously given money to them out of a mix of shame and fear. After all, they left without completing the "treatment", and didn't explain that choice very well.
Even here, where we have a good public healthcare system, people are still getting fleeced by quacks, because quacks tell them what they want to hear. Apparently, telling people what they want to hear, even if it's patently false, is a rather profitable business.
All you need to know about Burzynski's character can be found here:
Personally, I'm curious as to what "Hippotherapy" is, exactly.
Hippotherapy is horseback riding.
@14: I was also admittedly curious.
Unfortunately named, it seems, but it actually is the use of Horses for recreational therapy with the patients, usually handicapped children.
I have had direct experience of this in the UK, where patients who supposedly have "chronic Lyme Disease" (they don't) campaign for funding to go to the USA to get treatment and care that are "unavailable" in the UK.
The reality of the situation is infinitely removed from what the sufferers have claimed on their websites/facebook groups etc. They merely extract money from gullible and sympathetic friends/aquaintances/the general public, use some themselves and give the rest to Lyme Disease woo practitioners selling useless "cures".
Very thoughtful entry, gave me a lot to think about.
This has been happening for all my life (at least, the parts I can remember). Vic Williams' friends made the "Sweet Relief" album because she got slammed by bills from her MS. (And then of course MS makes it harder to play the guitar, thus cutting into her ability to make a living.) Also, the benefit party is a very common way for trans folk (whose medical expenses are sometimes, partly, covered by health insurance) to afford surgeries.
And sorry for cross-talk, but I feel I need to address the "rudeness" chatter from upthread. Of course it is the internet and civility is the exception, not the rule. But to offer to "slap [someone's] face" because you don't like their speech (tone or language, I'm not sure what is being objected to)? How does that increase civility?
Drat, I was hoping for something similar to swimming with dolphins - except, you know, with hippos.
Clarification: in my above comment, by "this" I mean "benefit parties for folks unable to afford needed care", not "asking strangers to pay for your magic water". Realized after the fact that was not explicit.
Apparently, telling people what they want to hear, even if it's patently false, is a rather profitable business.
Some people really really want to be lied to.
Consider: you are a financial adviser. One of your oldest clients comes to you and says "the guy down the street claims he can guarantee me an 8% return every year." You know this is a promise that cannot be made, but your client is saying they will leave. Do you call their bluff? Try to keep them by matching the promise you cannot keep? Calmly explain the facts and then watch them leave?
This is also a big problem in computer security.
Modest proposal: start two funds. One to pay for the quack's treatment; the other to pay for the quack's kneecapping should their treatment fail.
Too harsh? Not as harsh as fleecing the desperate and dying.
This is also a big problem in computer security.
Well, it IS possible to have a computer be 100% secure, in the sense that no unauthorized activity will ever occur on it. My preferred method involves a sledgehammer, C4, and a blast furnace.
Oh wait. You also wanted to be able to USE the thing, too? Blasted users and their unreasonable demands!!!
I just want to say, while I enjoy being rude sometimes, the Travis above is not me.
The thing that gets me is that she needed to prepay Burzynski the $14k. If I honestly believed that I could miraculously cure cancer, I think Iâd be willing to offer financing. I might have to include a risk premium in the interest rate to account for those patients who wonât live long enough to pay the full amount, but the Woosters generally claim really high cure rates so the premium should be pretty small.
Whereas if I knew my patients were not long for the world, Iâd probably demand cash in advanceâ¦
Of course Iâm not saying he is a scammer, just that if I were Iâd do business in a very similar manner.
@Jon H in #7,
To expand your metaphor, Iâd say our current situation is one where the state requires that all credit cards offer super platinum level cards and the banks charge accordingly.
The idea behind lifting the ban is to allow consumers to get around the often generous minimum coverage that state legislatures tend to impose on insurers. If I donât believe in alt-med, I should be allowed to buy a cheaper plan that doesnât cover it and my co-worker who only believes in alt-med should be able to buy a plan that only covers that. But instead we are both have to chose from more expensive plans that cover both.
Of course for this to really work, weâd also need to extend (or move) the tax deductibility of health insurance to plans purchased by the individual. And expanding HSAs would also help bring market forces to bear.
In the spirit of evidence-based medicine, this discussion of health financing policy needs to be tempered by evidence of what has worked in the past. Many attempts have been made to reconcile the idea of market forces with health care delivery. There are lots of models out there in the world. HSAs (I assume you're referring to Health Savings Accounts) are not, by and large, a very successful program as it leads to people rationing their own care until they can't bear the pain or discomfort anymore, at which point they are are far more expensive to treat. They work well in Singapore, and I think Sweden has a moderately-successful HSA program too, but those are the exceptions rather than the rule.
Also, the principle of "let the buyer beware" is fine when you're talking about cars or food or other consumer goods, but when your market is people who are desperate for medical treatment, putting the decisions in their hands is not a truly free-market system (it lacks a meeting of the minds, as one party is necessarily at a higher level of knowledge than the other). Canada/UK's answer to this problem was tax-subsidized and regulated health care delivery, the US's was HMOs.
To clear the air on my bias, I am Canadian and I work in the health policy sector, so I am clearly in favour of the Canadian single-payer system. It has its drawbacks, but is both philosophically and economically preferable to private for-profit medical delivery.
Actually, you're right. I was a bit out of line there. Terribly sorry for that.
Hippo is the Greek word for horse.
Hippotherapy is not recreational, but therapy that uses the horse as like a piece of equipment (in the a way similar to a treadmill). At the same time, I am 'agnostic' as to whether medical insurance pays for hippotherapy. This method is not in my 'woo' book.
For more click on my name and add this to the url -
The real purpose of a HSA is to take taxes out of the price of healthcare for individuals, and as a segway of making periods of unemployment more bearable as individuals wouldn't necessarily have their health insurance from their job. It's a known fact that if an employer weren't so heavily pushed towards providing health insurance by the government, the money spent on the insurance would go towards you. So tallying up the whole mess, there is more money usable towards health insurance, health insurance is accessible more often, and the individual has more money in pocket from their employer to better choose what insurance plan best fits them.
Can you provide a source for the study detailing the rationing you mentioned? I would like to read it.
The notion that an individual wouldn't know as much as a doctor and therefore any transaction would not be really a free market one is quite odd. I mean, have you ever heard of Underwriter's Laboratories? They're a private company that tests product quality and safety, and you can sue them if you're hurt using a product approved by them. This includes medical devices. So private industries naturally develop quality control entities, like the film industry used to have in the early 1900's and the car industry does today with private crash test agencies (which quite often have more stringent requirements than government alternatives). One doesn't need to be a professional in a field to learn which products work the best.
The problem with single-payer systems is Economics 101; set the price to $0 (well, not really, taxes and all-but I digress), and you get a shortage. And when shortages come about, you get wait lines and an even lower amount of poor people getting access to the service. Plus, you get spiraling costs, as I am sure you have learned about the current deficit your healthcare system is running.
"But to offer to "slap [someone's] face" because you don't like their speech (tone or language, I'm not sure what is being objected to)? How does that increase civility?"
For heaven's sake, I said I'd slap one of my own, NOT the poster! I only meant to demonstrate how unnecessary this kind of thing is--especially on this blog where many of the posters are regulars and seem like "friends". No one here has any problem with strong language, insolence and calling it like it is, but outright foulness just because you disagree with someone (on a matter of opinion, not science) seems overboard.
By the way, I have found that if you save that slap for a grave offense, it only has to be done once, the lesson is learned, and you end up with a civil-tongued adult. I
There is no sound evidence that hippotherapy has any effect on any medical or developmental condition. No doubt it is a potential opportunity to recreate and possibly interact with others that like horse riding. Here's one claim I pulled off a hippotherapy site (it is no longer up):
âPersonally, I have found in treating children with hippotherapy who have a diagnosis of autism that not only language is improved but gross motor, fine motor, motor planning skills and long term and short term memory, as well as eye contact, interaction with their environment and ability to transition activities as well as carry over into many other educational and social goals.â (Hyperion Farm, Inc., retrieved 2/05)
Such claims are unfounded.
Hyperion Farm, Inc. (retrieved 2/7/2005). Hippotherapy FAQs â Hyperion Farm, Inc.: Question
#5 (on the use of hippotherapy for improving communication in children with autism).
It's also a little weird that they listed swimming lessons, which is an expense any kid could cause. Although I can see how a special needs child may need more lessons than an average child, thus costing more. (Way to ramble until I explain things to myself.)
I didn't know that hippotherapy was touted as a treatment, and I've mostly just heard of it being a hobby that a special needs child could have, to replace the team sports or whatnot that they may not be able to participate in. It seems like its usefulness in being just a hobby should just stand on its own, and it's annoying that *everything* has to be a treatment.
If only you readers and writers would do your own research and investigation on Dr. Burzynski and antineoplastons instead of taking other peoples word for stuff. His results have been replicated and published in peer reviewed journals. I searched on Pubmed for Tsuda antineoplastons and found 6 articles in peer reviewed journals of replication of Dr. Burzynskis work with antineoplastons. I know that there has been a lot of articles and trials in Japan about antineoplastons.
The FDA overseas the clinical trials and ensures that they are done correctly. Dr. Burzynski started with the antineoplastons research before Baylor and it was first discovered in the blood, not the urine. As you could imagine, it was hard to find so much blood to test, so he found it was in urine as well. Antineoplastons is now synthetically made.
I not quite sure what you are talking about with the Underwriter's Laboratories. What I was referring to was expecting a patient or a patient's family to be able to make a rational, objective decision when facing catastrophic illness. Today's post is a perfect example of why that often is not the case. Yesterday's example of denial is a further illustration. It is not reasonable to expect someone to "comparison shop" for life-saving heart surgery or cancer treatment.
A quick PubMed search revealed this article, this one, this one, and a few others (I don't want to get flagged by the spam filter). Basically, they all say the same thing - while HSAs might seem like a good idea, they don't actually work the way they're supposed to.
The American system (even with HSAs) is subject to the exact same shortages that the Canadian one (or any socialized system) is. The difference is in how you account for them. In Canada, we have wait-lines. In the US, they boot people off the insurance rolls. I think before you start talking about the spiraling health deficits in Canada or the UK, you might want to take a look at US per-capita health expenditure.
I think trying new ideas in health care is a great thing, but they should be new ideas, not ones that have been shown not to work.
Bah, comment with links got held up by spam filter, despite my best efforts not to get nabbed.
Travis, here's one link that you can look at, but there are several others. The point is that HSAs are a nice idea, but don't work the way everyone thinks they should. That's because economics doesn't actually work the way they teach in 101, which is why there are many courses that come after it.
It's also a little weird that they listed swimming lessons, which is an expense any kid could cause. Although I can see how a special needs child may need more lessons than an average child, thus costing more. (Way to ramble until I explain things to myself.)
At the local public swimming pool there are "special pops" swim lessons. They are one on one (or two with one teacher if the kids are friends), but they are charged the same rate as a normal swim lesson. It is like getting a private lesson at a group price ($30 for a half hour private lesson versus about $6 per half hour group lesson).
Needless to say, they are not always easy to get into.
(Parent brag time: My younger son is a lifeguard/swim teacher, and some of kids he teaches are the special pops... which is how I know that they do pair up kids, if anything to provide more spots. He is quite good with all the kids, but I do not know if it has anything with having an older disabled brother growing up)
Carolyn, did read what Orac wrote? You said "I know that there has been a lot of articles and trials in Japan about antineoplastons." Did you actually read those articles? Look at what Orac wrote about Japan (with added emphasis):
As the article at Quackwatch points out, the National Cancer Institute could not replicate Burzynski's results. Neither could drug company Sigma-Tau Pharmaceuticals. Neither could the Japanese National Cancer Institute. So what we have here is a therapy that has marginal (if that) credibility based on prior probability.
If you really want to be taken seriously, you need to provide the journal, title, author and date of the papers with the evidence to support your statements. Just saying they exist is not sufficient.
How about a new independent documentary about Dr. Burzynski? That might help clarify a few things.
It even has 2 trailers for the film to be viewed on the website. I see that the director won a "Humanitarian Vision Award" from the recent sold out Newport Beach Film Festival Screening of this film on April 25, 2010.
Oh, and by the way, how do explain the fact that Dr. Burzynski is the only scientist in the history of medicine to have ever cured a childhood intrinsic brainstem glioma? There are peer-reviewed medical journal articles (you know, the same peer-reviewed articles that other scientists and doctors use to study data on clinical trials of new medicines) - to back it up. These trials were of course authorized and supervised by the Food & Drug Administration.
Just a little something to chew on:
FDA-supervised clinical trial data for diffuse intrinsic childhood brain stem glioma:
- Out of 3 FDA-authorized clinical trial groups using radiation & chemotherapy on diffuse intrinsic childhood brain stem glioma: 1 of 107 patients were cancer-free after treatment. This patient did not live beyond five years.
- Out of 2 FDA-authorized clinical trial groups using ONLY Antineoplastons: 11 of the 40 patients (27.5%) were cancer free at the end of treatment. 11 of the 40 patients lived beyond 5 years.
The type of radiation used to treat a childhood brain stem glioma patient burns their ears, they become deaf, it destroys their pituitary gland (which stunts their growth) and it usually leaves the child as a vegetable if the child even survives the radiation treatment at all. Antineoplastons A-10 & AS2-1 not only cured these people, but they did not have any permanent side effects from the treatment.
It is a gene-targeted therapy, 20-30 years ahead of modern science as we know it. Itâs not exactly pseudoscience. Funny how there are 30 FDA-approved gene-targeted cancer drugs on the market that target only a single gene on average, ANP targets nearly 100 genes. And somehow, Dr Burzynski, MD, PhD, is lumped into being a pseudoscientist. Gee, where have we seen this type of resistance before in history â those who donât understand what they are speaking of only to write it off as pseudoscience?
âTreatment of Diffuse, Intrinsic Brainstem Glioma in Childrenâ; Pediatric Drugs; 2006; Vol. 8; No. 3; pg 172: Mandell etal, Broniscer etal, Lashford et al, Burzynski et al
You see, itâs very important as a scientist to actually research something before lumping Burzynski in with the likes of what you wrote in this article. You canât call yourself a scientist basing your knowledge on just âwhat youâve heardâ, then it must automatically be wrong.â Thatâs not âscience based medicineâ, thatâs biased opinion.
Youâd be hard to find an oncologist who has ever seen a brain stem glioma in their career much less treated one.
Science is not a matter of majority opinion. Something either scientifically âisâ or it scientifically âis notâ.
However, "blogs" tend to lean toward opinion, not science ... even when they are titled "science blogs".
You want to see more?
I see that the director won a "Humanitarian Vision Award" from the recent sold out Newport Beach Film Festival Screening of this film on April 25, 2010.
...which of course is proof positive that antineoplastons cure cancer.
Ah, Bruce... nice one. It is also proof positive that you hate science, and prefer opinion.
Oh, goody. A Burzynski groupie. You wouldn't happen to have anything to do with the Burzynski movie you're spamming my comments with, would you?
Heh. Maybe you'd be willing to send me a review copy.
BTW, the movie website contains a hilarious, Whale.to-worthy bit of conspiracy mongering that left me in stitches:
You know, you may well have given me blogging material for Friday. :-)
Is your name Eric Merola?
My husband is a film festival director. His film festival offers very few laurels, your standard best doco/best animated/best feature/audience choice type. But he is aware of many other film festivals that offer a number of laurels, because that's a great way to attract entries. People have to pay to enter their films; people want to pay to see award-winning films; so more laurels = more money. Newport Beach has a pretty good reputation as a film festival; but for most film festivals, winning a "best whatever" laurel - if it's not one of the biggies - is usually not much more than a way for a film festival to fundraise.
And Newport Beach's reputation notwithstanding, it's not a science festival. It's not a medical forum. I don't ask my doctor to deconstruct "A Clockwork Orange" for me; why would I ask a film festival to give me advice on treating cancer?
I see that the director won a "Humanitarian Vision Award" from the recent sold out Newport Beach Film Festival
Peer review, movie reviewâ¦ it's all the same, right?
OT but there was recently a post at Psychology Today panning The Vaccine War and suggesting that "well respected pediatricians" Dr. J and Sears the lesser should have been given more time.
People might want to let him know what you think. AoA is praising his wisdom.
There is another (not treatment) intervention called therapeutic horsebackriding - where the child learns to interact with a horse for emotional and behavioral benefit. Perhaps recreational.
By comparing the horse to a piece of equipment - the 'therapy' portion is defined by the provider or someone who is certified/licensed/educated/trained to give said therapy. Commonly physical therapists and sometimes occupational therapists (who are also horse-oriented) learn to use the horse in therapy.
Like I said in my post, the horse is a means to weight-shift, trunk strengthening and development of sitting balance. If I'm directing the treatment session, it is physical therapy because I am qualified to provide PT.
In terms of reimbursement (denied) by medical insurance for hippotherapy - part of the anachronism of billing by modality (hot packs, ultra-sound, massage). Denial is less about proven effectiveness - for the benefits of exercise are well-proven.
1000 a month for homeopathy ?
Yer kiddin me.
So when can we expect Dr PhD Burzynski to publish his findings in a peer-reviewed journal ? you know, like actual science ? I'm sure everyone would love to see his epoch-making discovery.
So when can we expect Dr PhD Burzynski to publish his findings in a peer-reviewed journal ? you know, like actual science ?
He's too busy curing cancer at umpteen grand per customer (up front of course) to get around to publishing dontcha know.
OT but there was recently a post at Psychology Today panning The Vaccine War and suggesting that "well respected pediatricians" Dr. J and Sears the lesser should have been given more time.
I know this is being discussed over in another thread, but the way you state it just completely illustrates the problem with it: Dr. J and Sears should have been given more time. Why? Aside from being contrarian voices, what do they contribute to the discussion?
Sears has a book of unbacked assertions. He knows it as well as anyone. And Kermit the Jay? He doesn't have anything but Jenny McCarthy as a client.
And calling them "well-respected" pediatricians really begs the question. The Academy is filled with "well-respected" pediatricians who can't stand Sears or Oscar the Jay. A lot of them have even written books about pediatric medicine. Why should the words of Bob Sears and Bert and Jaynie be any more significant?
There only qualification is that they are contrarian. But being the loudest contrarian does not make your contributions useful.
Dex is a moron.
I suppose the 1000 genes "targeted" by the antineoplastons all magically happen to be involved in tumor growth.
Can somebody give me the odds of that happening with a single treatment?
But, hey - watch his movie. No conflict of interest.
Info from the BC Cancer Agency about antineoplastons:
The Ontario government sent two Toronto specialists to Burzynski's clinic - of 20 cases reviewed, no evidence was found that any had benefited from treatment. Of four patients Burzynski claimed had achieved complete remissions, three had died of recurrences and the fourth had undergone surgery for bladder cancer that was believed to be curative. (Dunlop) (Blackstein)
Orac, under your "Non-Orac Insolence" panel, you've got the old URL for the Stop Jenny McCarthy site. It's just www.stopjenny.com.
The fact that you guys on your side of the Pacific have to fund-raise to get medical treatment (woo or non-woo) just astounds me.
I realise that it doesn't happen to everyone, but comments by Olga (#3) and Fnord Prefect (#21) indicate that it's pretty common.
I cannot imagine that happening around these parts. Of course, we have universal medical care here in Australia - so that makes us some sort of socialist dystopia, what with our death panels and rationed care : - )
Orac, anyone, please do apply some insolence to #41. I don't usually advocate shooting ducks, but that thing's just... sitting there.
I showed this to a friend who has a daughter with Downs Syndrome. He and I often discuss the issue of woo treatments with kids like these. He noticed a problem in the flyer for Colton: He's pretty certain that most of the treatments are government subsidized or ARE covered by insurance on the basis of need rather than specific diagnosis. I'm not sure how much of this is limited to his experience with our specific state and county, but he does help run the local Downs Syndrome Society and he does think these options are available anywhere. I suppose he could still be wrong or there could be more to the story, but he raises the possibility that someone (maybe insurance and therapists both) is taking advantage of that family, separate from the homeopathist.
Kneil @ 28, the reason the woo master don't extend credit is not distrust of their therapies but lack of trust in the patient to actually complete the course.
If the patient gives up on the coffee enema after 80 instead of the 100 prescribed, rolls over and dies, it's not the fault of the therapy, it was the lack of will by the patient.
My preferred method [of securing a computer 100%]involves a sledgehammer, C4, and a blast furnace.
My preferred method is much simpler and has a smaller carbon footprint: leave it in the box.
Many years ago when I was still in the Air Force, I was involved in a project to build a custom, electromagnetically shielded room inside a building. It was essentially a giant, walk-in safe, but it let us use regular computer equipment to do classified work.
When the equipment was obsolete and had to be destroyed, the treatment was pretty much as described. Shred, melt down and/or incinerate.
Here are just a few I found within the last 10 years. Some written by Dr. Burzynski and some from Japanese doctors. It's a shame I had to look them up for you Chris #40. And yes, I have read them and Quackwatch and Quackwatch has a lot of lies as does this forum. I suspect that T. Bruce McNeely is actually Orac, but really who the heck cares.
1.Targeted therapy with antineoplastons A10 and AS2-1 of high-grade, recurrent, and progressive brainstem glioma.
Integr Cancer Ther. 2006 Mar;5(1):40-7.
2.Long-term survival of high-risk pediatric patients with primitive neuroectodermal tumors treated with antineoplastons A10 and AS2-1.
Integr Cancer Ther. 2005 Jun;4(2):168-77.
3.Phase II study of antineoplaston A10 and AS2-1 in children with recurrent and progressive multicentric glioma : a preliminary report.
Drugs R D. 2004;5(6):315-26.
4.Long-term survival and complete response of a patient with recurrent diffuse intrinsic brain stem glioblastoma multiforme.
Integr Cancer Ther. 2004 Sep;3(3):257-61.
6.The present state of antineoplaston research (1).
Integr Cancer Ther. 2004 Mar;3(1):47-58. Review.
7.Phase II study of antineoplaston A10 and AS2-1 in patients with recurrent diffuse intrinsic brain stem glioma: a preliminary report.
Drugs R D. 2003;4(2):91-101.
8.Efficacy of antineoplastons A10 and AS2-1.
Mayo Clin Proc. 1999 Jun;74(6):641-2.
9.Antineoplaston induces G(1) arrest by PKCalpha and MAPK pathway in SKBR-3 breast cancer cells.
Oncol Rep. 2005 Aug;14(2):489-94.
10.Long-term survival following treatment with antineoplastons for colon cancer with unresectable multiple liver metastases: report of a case.
Surg Today. 2003;33(6):448-53.
11.A novel strategy for remission induction and maintenance in cancer therapy.
Oncol Rep. 2002 Jan-Feb;9(1):65-8.
I mentioned some of these in the post above. For instance, Integrative Cancer Therapies is a woo journal; Surgery Today is a throwaway (it's not even a proper journal, really); and the rest of these are pretty much low-ranking journals. That in and of itself doesn't meand the studies are wrong, but notice how all but one of these are either case reports, commentaries, or preliminary studies prone to "false positive" results. The one that isn't is a cell culture study.
Let's put it this way. I bet you probably don't want me to look at these studies really closely. You really don't By the way, what happened to Dex? He seems to have disappeared rather quickly when I asked him if he had anything to do with the Burzynski movie.
I suspect that T. Bruce McNeely is actually Orac, but really who the heck cares.
Hey, I care!
Actually, I'm honoured - to be considered the equal of King (or Mainframe) of Respectful Insolence is making my head spin! Flattery will get you everywhere, Carolyn.
BTW, did you check out the link in NP's comment #55?
Thanks for the reminder, T. Bruce!
I thought the "Professional Evaluation/ Critique" was interesting:
"Response was only assessable in 6 patients and none of them had tumor regression, with 3 patients requiring reoperation after AN [antineoplaston] treatment. The median survival time for all 9 patients was 5.2 months."
"what he has done is present such a confusing morass of data that it's uninterpretable."
"Of four patients Burzynski claimed had achieved complete remissions, three had died of recurrences and the fourth had undergone surgery for bladder cancer that was believed to be curative. "
"The patient succumbed to her disease some 6 months later."
"...two Ontario patients developed septicemia after returning from Texas and one of them died of septicemia"
If this is Burzynski's idea of an effective cancer therapy, I'll take the less effective version, thank you.
"Quackwatch has a lot of lies" - it sure does - it has the lie that Dr. Burznski can cure cancer, and the lie that autism is due to mercury, the lie that autism is due to measles virus, the lie that homeopathy is effective at anything. But then, Quackwatch goes to the trouble of refuting all the lies, with evidence, providing a valuable service to people who might otherwise be fooled by the lies into giving money to the ghouls who promote such lies.
Well done Orac!
I strongly feel that these woo 'doctors' should be facing criminal charges.
He noticed a problem in the flyer for Colton: He's pretty certain that most of the treatments are government subsidized or ARE covered by insurance on the basis of need rather than specific diagnosis.
well yes and no. I have a child with down syndrome as well and have been though both early intervention (birth to 3) and special education services through the school system. Early intervention will provide services such as speech, physical and occupational therapy in the home. It varies by state and even by county within a state as to how much of the cost a parent would be responsible, some states charge nothing to some the parent may be responsible for 50% or more of the cost. There are wavier programs that can help pay those copays as well (the basis for some of these waivers is that the parent is able to care for a child at home more cheaply than an institution could.)
After age 3 the school system is responsible for delivering the therapies under IDEA/special education. However, funds are limited and the amount of therapy may not be sufficient for the child's needs or the parents wants. Insurance can pay for some of the therapies, but often the benefits are limited such as 20 visits per year and co-pays tend to be high. Also, some policies will pay for rehabilitative care in the case of an injury but not care in the case of a congenital disability. Again the waiver programs can assist in payment for therapies.
As an aside, I have a good friend who is a school psychologist, so very involved in the decision as to what and how much of various therapies a child will receive. She has had requests that the school system provide all sorts of questionable therapies in the case of autism, including chelation. She has been verbally abused and screamed at by parents when their requests are turned. Told that she "obviously doesn't care for the well being of these children" when she doesn't grant these type of requests.
All these alternative cures cost thousands, if not tens of thousands of dollars - upfront, no insurance accepted.
You only have to look to Dr. Buttar in my state to see just how lucrative alternative medicine is for the provider.
"a serious problem in our health care system, namely the unemployed"
Going back to the insurance issue, I'd just like to point out that the problem with our health care system goes way beyond the unemployed. My husband holds two jobs, both 25 hours/week. And do you know why both of these jobs are 25 hours? Because that's the largest number of hours these employers can get from an employee without providing insurance coverage. Thus he works more than full time, but has to find his own insurance. We pay out of pocket, and for several years (until we switched to a high-deductible plan) our health premiums were more expensive than our mortgage & insurance, heating, and electricity combined. And that was post-tax income!
Sorry, quick clarification. I didn't mean to imply that we pay for our health care out of pocket, but that we pay for our own insurance with our post-tax income.
Why did you change the title of this article? And add a coupla authors? Is it because this paper is a review, and as such not exactly evidence of anything? Or is it that you cut-and-pasted it from somewhere else that did? Have you even READ this, or are you relying on interpretations by others? Or are you cherrypicking quotes/conclusions from it, seeing as you have only referenced one page out of a 12 page article?
Citation at RI by 'Dex'
âTreatment of Diffuse, Intrinsic Brainstem Glioma in Childrenâ; Pediatric Drugs; 2006; Vol. 8; No. 3; pg 172: Mandell etal, Broniscer etal, Lashford et al, Burzynski et al
How PubMed cites it:
Treatments for astrocytic tumors in children: current and emerging strategies.
Paediatr Drugs. 2006;8(3):167-78. Review.
How 'Pedriatric Drugs' cite it:
Treatments for Astrocytic Tumors in Children: Current and Emerging Strategies
Burzynski, Stanislaw R
Pediatric Drugs. 8(3):167-178, 2006
I found this exact same post over at SBM, as a response to a blog about Suzanne Summers stupid book. Dex/Erico has added a little intro to it here at RI. I like it, it's got zing, and gives a little background before it goes into the "cold, hard facts".
Woo...... like when people ingested cranberries for bacterial infection and doctors mocked it, like garlic that all our voo-doo ancestors believed had healing powers ( and the studies that now show when it's crushed it creates allicin, a very strong antibacterial agent) or like acidophilus and it's sibling probiotics that to this day some doctors still consider anecdotal...yet pharmaceuticals make millions off of it and insurance companies cover it for maintenance of very serious digestive system disorders.
Yesssss, woo is a great name for the pride of many who can't believe in the value of anything simple.
That same pride fuels a system based on out-priced therapies that straps our country and its citizens financially. A system that puts many average citizens at risk.
Not to mention that it fuels a belief system that does not encourage wisdom, self discipline or restraint, but creates the culture of quick fix....(like the bank bail out?).... that doesn't take account of the long term repercussions, aka: side effects
The very same thing is now happening in the UK with the Hope For Laura campaign.
See here http://bit.ly/kNeOJu
Can you guys not get your own version of the Cancer Act going or something?
This family has raised Â£145,000 for treatment for their daughter, who now seems to be experiencing swelling to the brain...
As a physician I try to do the best I can keeping in mind that we actually don't know as much as we would like. We are very early in the progress of medical knowledge and our ignorance frequently is profound. I have to remind my patients at times that we aren't as effective in diagnosis and treatment as we would like and it's only been one lifetime since antibiotics, wide spread utilization of vaccines, and good public health measures have come about. Cancer therapies are quite recent. Treatment of mental disorders are just on the cusp of becoming effective.
With perspective we should have open minds to all sorts of wild ideas as well as simple practicle ones. My problem with non-standard treatment has always been with the physician's 'contract' with a patient. Health care providers must offer therapies that are safe and effective or explain that we offering a controversial or experimental therapy. First of all we should only use treatments that are as safe as possible while being as effective as possible. If we know a treatment is safe but do not know if it's effective we need to be honest with ourselves and our patients. Secondly putting a cost, especially a high cost, on a treatment that has not passed typical scrutiny is unethical.
There are many unproven approaches to medical treatment that at first seemed strange and ineffective but proved to be effective with further study. There are many unproven medical treatments that become quackery championed by professionals who were ethical but for some reason have driven themselves outside the realm of realistic and ethical practice. I don't know enough about cancer therapies and Dr. Burzynski to engage in criticism but I do know that we all, Dr B included, have an obligation to do the work to show our therapies are safe and effective, to submit the data from well designed studies to appropriate journals and that we refrain from claims of efficacy when they are not proven. The is especially important in life and death issues such as cancer treatment where there can be a delay in the care of patients because they have been mislead to experimental therapies with inflated claims. I'm much more comfortable with experimental, alternative or complementary therapies after the best therapies have been tried and have failed. I understand I'm conservative in this matter, probably more so than many readers here would agree with, but I've seen many problems made worse, care delayed and health damaged by those wishing to 'believe' in something that is neither safe nor effective.
My daughter died of a malignant brain tumor that was poorly responsive to radiation at the age of 16 months when I was finishing up my residency not far from Houston. Some well-meaning people suggested "antineoplaston" "treatment". As truly desperate as my scientist wife and I were for anything that might help her, we couldn't see any conceivable reason to waste any of her remaining time pursuing anything that useless. America seems to be winning its war on science, since the ability of people to grasp basic scientific facts and methods seems to be deteriorating.
@ Mark: My sincere condolences to you and your wife. It is so very difficult to lose a child..I've "been there".
I suppose for many of the regulars here, our love and concern for the innocent children and adults who are taken in by charlatans, keeps us posting here. Then too, there is the knowledge that we gain from Orac's brilliant blogs and our collective addiction to pursuing knowledge on the internet.
Please come back and post again.
I'm here trying to ascertain the truth. I am helping someone with glioblastoma IV, and he and I are both half-sold on Burzynski. He has so far responded incredibly well to a round of chemo and radiation. However, I began investigating the claims against him and I came upon this site. I really don't know what to make of it.
I was a psychoanalyst for 30 years. I was trained at a legitimate institute, founded on the work of a man considered to be a quack in the psychoanalytic and medical communities. In that field, which is not hard science, there is really no way to tell who is a quack and who is not. His ideas were ahead of his time, and he claimed he didn't care about fame. In fact, his theories entered mainstream psychoanalysis, exactly as he predicted, but in the 1970s instead of in the 1940s, when he working successfully with very disturbed children at a charity organization, where he also trained others in his techniques. He claimed to have developed a talking cure for schizophrenia. Undaunted when this was declared to be an organic brain disease, he explained that a person could be taught how to act normal, and that was all that mattered. He was thrown out of the most respectable psychoanalytic institute in the world, that would train only physicians. He also believed in admitting so-called "cured patients," with no prior experience or education in mental health, for psychoanalytic training. I'm sure the readers here have seen enough to validate his quackery.
But there was much method in his madness, and he had very good results where others failed. However, his "followers" got carried away, applied his techniques to all their patients, regardless of diagnosis (against his recommendations), taught his very subtle and flexible approaches as dogma, and created a generation of ineffectual therapists. As one who trained personally with him, I had much success in my practice for decades. This man died at the age of 99 - a few months short of the 100 years he promised by husband, in exchange for his giving up smoking cigars. This man preached the importance of aggression over Freud's libido. He was right about many things, but ultimately, both he and Freud were wrong about a lot more. I no longer call myself a psychoanalyst, nor do I practice as I did. My mentor, before he got old, told his students that after they learned what they could from him, they should become themselves and do what worked for them. I remembered this, even though in the latter part of his life he wanted to "pass the torch." He passed it to me, and I followed his method strictly for a long time.
In the past few years I have discarded the larger portion of what I was taught in favor of a more equal, relationship with clients (they are no longer patients to me). I am not authoritarian, and more casual in my manner. I have begun to see my work as experiential pedagogy, rather than as treatment. I have left the mental health profession altogether, and instead I consult with people who desire to find more fulfillment in their lives - to have more satisfaction and less suffering. Of course, no one sees a doctor for this unless they are in terrible pain, but I don't view it as illness. Certain people are referred to conventional psychiatrists for mainstream medical treatment if it seems to me that this is what they need. I'm an "old pro," in a way that all good therapists from many different schools of thought are if they have had success with difficult cases over many years.
I think about my mentor now. He had an axe to grind, and a personal score to settle, and his theories and techniques reflected this agenda. Still he had a "therapeutic personality," a razor-sharp intellect, and a sparkle in his eye that was completely compelling. There is no doubt in my mind that he helped people. My own theories are very different from the ones I was weaned on. I am currently working on the idea that so-called "placebo" may be anything that a patient believes will help them, and that the prescribing doctor also believes will work. Studies have shown these two beliefs to be extremely effective in combination. Under these conditions placebo is more effective against depression than Prozac (or any other SSRI). Prozac is approximately as effective as placebo (sugar pills), but in these experiments neither the prescriber nor the patient knows what is being given or taken. An article I read yesterday said that science is deceived regularly by human beliefs about causality: "Given the increasing difficulty of identifying and treating the causes of illness, itâs not surprising that some companies have responded by abandoning entire fields of research. Most recently, two leading drug firms, AstraZeneca and GlaxoSmithKline, announced that they were scaling back research into the brain. The organ is simply too complicated, too full of networks we donât comprehend."
I think you may see where I'm going: I don't know about Dr. Burzynski. He has that same sparkle in his eye, the same rebel spirit. If he is a quack, I am quite sure he doesn't know it. I think he is like my mentor: He really wants to cure his patients. Contrary to what people think, he is using conventional chemotherapy drugs in combination with his "antineoplastons." The patent with brain cancer really wants a cure, but he is realistic and is ready to die within the 2 years that have now been predicted by his current doctors, who at one point gave him only a month or two. His chemo and radiation have worked far better than expected, and his tumors are unique - The world's best oncologists have never seen a case of GBM that began with 2 tumors, and the appearance of a third within a week or two. He has already beaten the odds, in both his tumors and his response to conventional treatment. He is not willing to become a "professional patient," and has declared that once he is bedridden and incapacitated he prefers to die. He can pay for Burzynski, and has good insurance as well. His biggest reservation about being treated at the clinic was that he would have to spend weeks in Houston, Texas, where he cannot do his work. He is also investigating a promising program at Duke University and one at Memorial Sloan-Kettering in New York.
A few days ago we spoke in person with a physician at the Burzynski Clinic. She was clearly competent, understood everything about the case, and knew what the requirements are to qualify under the FDA for the Phase 3 clinical trails. She needed tissue samples and an MRI. after radiation is completed. The next day she reported with great excitement that Burzynski himself had reviewed the case (he normally doesn't even become involved until the patient has already visited the clinic) and is very willing to take his case. What have you to say? I am asking in all sincerity.
Kate- take his case or his money? Clinical trials aren't supposed to cost tens or hundreds of thousands of dollars to the patients. That, by itself, should be a red flag.
Also, the way you describe his "charisma" is the same way cult leaders are described as well.
Run, don't walk, from the Burzynski Clinic. Your friend might think he has nothing to lose, but that's not true. He has hundreds of thousands of dollars to lose, the possibility of serious complications, and the diversion of his care from palliative care that can make his remaining time better and less painful to woo that will not. (Burzynski doesn't do palliative care, as far as I've been able to tell.) If you want to learn more, I've written a lot more about Burzynski and much more recently examining what Burzynski is really doing, as well as the lack of evidence to support what he does:
And here are examples of his clinic's tactics for dealing with critics:
Lawrence is right. Burzynski has built a cult of personality around him:
Gotta second what Orac said. There are a lot of other clinical trials out there where subjects do not have to pay to participate. If your friend does decide on Burzynski, it would be very interesting to see the consent form for trial participation.
@Orac I appreciate the info and the advice. I am also flummoxed by the lack of response to my three-decade experience with a quack around whom a cult was born, and my extremely positive take-way, to include the saving of lives, both while a member of the cult and after having gratefully discarded it. I am looking for Truth with a captal T, more than I am advice. I am not worried about the man with GBM: He is bright enough not to screw himself. He has a arranged a "tour" for himself, to include the most reputable cancer treatments in the world. Also, in the case of GBM there is no palliative care. When his life is no longer worth living, he can simply "go to sleep," and this has already been arranged.
I would be so grateful to you or anyone who addresses my actual question.
I would be so grateful to you or anyone who addresses my actual question.
Orac did answer the only question in your screed: "What have you to say?." He gave you the links of what he had "to say" over the past few weeks on Burzynski.
If that was not the question you had in mind, try rephrasing it to one sentence and not seven rambling paragraphs. But closely read the links that Orac posted before condensing those 1192 words to a reasonable length, and an actual question.
I plan on reading all of it. I have sent Orac an email with an explanation of my own, because my long post and its meaning were not understood.
I suppose the word, "screed," means I am seen as an unfriendly type in these parts, but the fact is, I am not opposing what is said here, although I am surely verbose; but I must point out that some of the posts here are tinged with a bit of sycophantic sentiment. I do realize by now that Orac is a well-respected research scientist and an upstanding medical watchdog. However, the humour, which is distinctly British, doesn't quite make me laugh. I suppose I don't think cancer, quackery or "woo medicine" are funny, nor are some of its "quacks" given their full due in terms of what they may provide for the terminally ill. I had hoped to discuss the placebo effect in some detail here, but the atmosphere is not friendly to this kind of talk.
I also understand recently that the good doctor, also a surgeon, and extremely important member of the internet community, is inadvertently causing a number of terminally ill patients great pain - due mostly to the rhetoric of some of his not-so-brilliant followers, who are making sport of Burzynski's "victims." I came here asking legitimate, if slightly falsely naÃ¯ve questions, and they have not been answered, nor has my email, thoughtfully written and sent twice to the address requested by Orac.
Kate, nobody is making sport of those who have been taken advantage of by Burzynski. Moreover, this has nothing discernible to do with your rambling tale about your psychoanalytic training under someone that you for some reason couldn't be bothered to name only to complain about your embedded questions not being obvious or something.
Orac is verbose, but clear.
And none of us are making sport of Burzynski's victims. The only one who is has been mocked was Mike Stephens for his incorehent rants claiming to be a lawyer. I think you need to read the articles and comments more carefully, especially if you think the humor is "British."
Actually, I have doubts that you actually read what Orac wrote above. Look at the title, what does it say? Is he mocking patients? Are we mocking the desparate who become victims of people who see them as sources of income? Absolutely not.
The best way to sum up the multiple articles on Burzynski are: false hope is no hope.
Some quick points:
Burzynski has not done any Phase III clinical trials. There is one that is listed, but they have no patients.
No one who signs up for a clinical trial should have to pay for it. That is not standard procedure.
Burzynski is not being honest when he says his treatments are not chemotherapy. If you had read the other articles, you would have learned that.
You said: "She was clearly competent, understood everything about the case, and knew what the requirements are to qualify under the FDA for the Phase 3 clinical trails."
Of course the office personel seem nice and competent. You are more likely to pay them to be part of that mythical Phase 3 trial. When you were reading all of the articles and comments you must have come across comments on that Phase 3 trial.
Well here it is (click on the blue words). Read what it says.
The first line in bold green type says: "This study is not yet open for participant recruitment." Why would the clerk say he could qualify for a study that was not open?
Now, continue and read the dates:
Study Start Date: December 2011
Shouldn't they have the 70 participants last month?
Now look at the age requirements:
Ages Eligible for Study: 6 Months to 18 Years
No matter how many times I read your post I could not figure out who the patient was. Was it the mentor? No, he died when he was 99. Somewhere you start talking about a "patient", but the way he was introduced in a the middle of a paragraph that was about Burzynski's sparkle in his eye or whether or not he was a quack, I assumed you meant some generic patient, not a specific person
Though you did finally mention he can pay for Burzynski's treatment. How can he do that if he is under age 18, the upper limit for the only Phase 3 trial? The one that the person in the office said he would qualify for.
And where are his parents? If he is under 18 he needs a legal guardian. Is he an emancipated minor who is working and earning six figures per year? What kind of work does a teenager do if he can afford Burzynski's treatment?
If the office staff said that it was an adult over age 18 that qualified for the one and only Phase 3 clinical trial approved for Burzynksi, then you were lied to. That alone is reason to get very far away from them as possible.