The failure of the Texas Medical Board: Houston cancer quack Stanislaw Burzynski is back in business

oracknows — Wed, 26 Apr 2017 07:50:23 +0000

When last I wrote about Houston cancer quack Dr. Stanislaw Burzynski nearly two months ago, he had, as I characterized it, just mostly slithered away from justice once again. The Texas Medical Board had not removed his license and had only fined him relatively lightly given his offenses. True, he had conditions placed on his continued practice (more on that later), but it hasn't slowed him down, as you will soon see. Another family is raising funds, this time from the UK, to travel to Houston for his nostrums. Basically, by failing to revoke Stanislaw Burzynski's medical license, the Texas Medical Board has once again utterly failed to protect the patients of the world from his cancer quackery.

Regular readers will be familiar with the tale of Stanislaw Burzynski, the Polish expat physician turned cancer quack who started out as a promising physician and researcher but then became so convinced that a discovery of his was a treatment for cancer so much better than what mainstream medicine had to offer that he left the path of ethical science, set up a clinic to administer his new treatment before clinical trials had shown efficacy and safety, and has been a star in the "alternative cancer cure" community for over 40 years. His discovery was antineoplastons (ANPs), small peptides he isolated from the blood and urine that he believed were endogenous cancer suppressors, and he's been charging patients exorbitant sums of money to administer them for decades now. Over the last decade or so, he's branched out to what he calls gene-targeted therapy, which is basically a toxic cocktail of expensive targeted therapeutics based on Burzynski's on-the-fly, "make-it-up-as-you-go-along" interpretation of genomic tests and his selling himself as having been a pioneer in "personalized" or precision medicine, a claim so obviously risible on the surface that it bespeaks an ego and lack of concern for the truth on the order of Donald Trump. More recently, a credulous filmmaker produced two propaganda films disguised as documentaries, Burzynski The Movie: Cancer Is A Serious Business (now updated) and Burzynski: Cancer Is A Serious Business, Part 2, or, as I like to call it, Burzynski 2: Electric Boogaloo. Both movies burnished his reputation among the credulous as someone who could, using ANPs, cure brain tumors deemed incurable by conventional medicine.

When first I took a keen interest in Burzynski in 2011, his M.O. had been well-established, and the first Burzynski movie had amplified it. He'd talk up his ANPs as being able to treat cancers that conventional medicine could not, giving patients and families false hope. Then family would have to raise money prodigiously to afford Burzynski's supposedly "cutting edge" treatment. Often, credulous reporters looking for a human interest story would help by publicizing the family's plight, and sometimes celebrities would become involved and help raise funds. This particular story played out all over the world but was particularly common in the UK, where the tabloid press was a willing accomplice to Burzynski by being more enthusiastic and less skeptical even than the US press in publicizing these sad stories. Examples were numerous and included high profile cases such as Billie Bainbridge, whose family raised hundreds of thousands of pounds and got celebrities to help in order to travel to Houston, and Amelia Saunders, a lovely child who was unfortunate enough to be diagnosed with a brain tumor whose parents raised over £200,000 in 12 weeks in order to pay for Burzynski’s treatments and who was featured as a great "success story" by Merola and Burzynski. What really angered me (even more than a typical Burzynski story) is that Burzynski told the father that the formation of cysts in the tumor was the tumor dying because of treatment when in reality it is quite common for tumors to outgrow their blood supply, leading to the death of cancer cells in the middle. Sadly (and not at all unexpectedly), Amelia ultimately died. Basically, Burzynski's business model relied on the credulity of the press, the rise of Internet fundraising (as in GoFundMe), and harnessing the generosity of kind-hearted strangers to contribute to pay for his ANPs for dying children. After the Texas Medical Board's sanctions, I thought that this business model, at least, was over.

I was sadly, enormously mistaken.

As Andy Lewis tells us, a child, Cristiano Sousa, has a lethal brain tumor, and the family is raising money to travel to Houston for Burzynski's quackery. Cristiano's mother, Ewa Sitkowska, and her Portugese partner Orlando Sousa are doing this because they believe that Burzynski can save their son. Truly, I'm having acid flashbacks to 2012 again. As is the case with so many of Burzynski's victims, Cristiano's case is heartbreaking. Just read his GoFundMe page, where the family is trying to raise £200,000 for his treatment:

On the 5th of January 2016 our lovely 9yrs old boy Cristiano got diagnosed with very rare, not operational and very aggressive tumor, Embryonal Rhabdomyosarcoma – a soft tissue cancer.

It was heartbreaking.

We learn that Cristiano went through a brutal treatment regimen:

First he got 3 cycles of chemotherapy, his tumor shrunk, so in March 2016 the NHS send us for a 9 week Proton Beam Therapy in Oklahoma. Unfortunately after just 10 days in the USA Cristiano’s tumor grew to double the size, so the NHS decided to bring him back to the UK. That was a massive shock for us and the first time I saw fear in Cristiano’s eyes, we were back at the beginning of the battle.

He was put into a stronger chemo regime and 31 sessions of very high dose of radiotherapy, which gave him a lot of pain and tears. The right side of his face, throat, cheek and inside his mouth were burned from radiotherapy. At this time Cristiano stopped eating, so he had one more surgery to put in a PEGtube.

By the end of radiotherapy the inside of his mouth, throat and upper side of his face were bleeding, scarred and painful, at that time he said to me “ I DON’T WANT TO LIVE ANYMORE ! “ - it is last thing parent want to hear from a child…..

I was surprised to learn that the NHS would pay to send a patient to receive proton beam therapy in Oklahoma. Given the stereotype promulgated by right wingers of a penny-pinching NHS that withholds vital treatments, this story seems to stand out. Be that as it may, as bad as the above passage sounds, there was some hope, at least initially. The salvage treatment with chemotherapy and high dose radiation appeared to have been fairly successful initially, with shrinkage of the tumor. He went back to school part time, was able to spend time with friends, and played with his brother. His parents report that he had started smiling again. You know where this is going, of course.

In October, the cancer came roaring back, and it's particularly horrible, especially for a child and, almost as horrific, for the parent who has to watch and care for the child. The tumor is growing behind his right eye and pushing it out. According to the family, nothing can really be done about the eye other than to consider removing it surgically. It's hard to imagine being in a more hopeless place than the Sitkowska family is right now. Not only is their child dying and conventional medicine has nothing to offer beyond palliative treatment, but the cancer is progressively disfiguring their child's face as it relentlessly grows. Chew on that for a minute. Try to imagine yourself in those parents' situation, and you will understand how they could grasp at any hope:

After a lot of research we found an amazing clinic in Houston- Texas, the Burzynski Clinic, we sent them Cristiano’s medical records, scans, etc… After their team reviewed them, they believe Cristiano is a good candidate for their treatment, and there’s a good enough possibility of success, and with this we were given another line of hope. Dr Burzynski already saved a lot of life’s with his groundbreaking Antineoplaston therapy. The only barrier to start Cristiano’s treatment is the cost, full treatment will cost in excess of £200000, this is a private clinic and therefore not covered by the NHS, we don’t have the financial means to cover this treatment but WE BELIEVE IN GREAT-HEARTED PEOPLE!

WE ARE BEGIN FOR HELP!!!

PLEASE EVERYONE!!!

HELP US SO OUR SON OSCAR CAN GROW BY HIS OLDER BROTHER’S SIDE!!!

HELP US MAKE CRISTIANO SMILE AGAIN !!!

HELP US SO CRISTIANO CAN ENJOY HIS LIFE FOR LONGER THAN JUST 9 YEARS !!!

Sadly, it's almost as though the UK press has learned nothing since all the news came out about how Burzynski's ANPs have never been shown to have significant anticancer effects and are toxic enough to have landed children in the hospital and even to have caused at least one death. For instance, last Thursday, the Huddersfield Daily Examiner published an article entitled This is the last chance to save my boy's life: Mum's plea for Cristiano, 9, has rare tumour and needs treatment in America. It's basically a rewrite of the parents' GoFundMe page plus a video that's rather hard to watch:

Looking at that child and his mother who loves him, only the most cold-hearted person would fail to be moved and saddened. However, I was also angered. Burzynski actually said that this child would be a "good candidate" for ANP therapy and convinced Sitkowska that the treatment could actually save her son's life? He actually told them that, even though there's no objective evidence that it's true? And then he told her it would cost £200,000? It makes my blood boil. Again, as was the case in so many stories five years ago, it's pointed out that the NHS won't pay for ANP treatment without pointing out the reason why: The NHS quite correctly has concluded that ANP therapy is ineffective. It's useful to contrast this NHS policy with its willingness to fly Cristiano to Oklahoma with his mother for proton beam therapy, a therapy that is effective but, from my reading of the peer-reviewed literature, only slightly more effective than standard radiation therapy (and then not for all tumors). Think about it this way. If the NHS is willing to fly a patient to Oklahoma for proton beam therapy but not willing to pay for ANPs, that should tell you something—about ANPs.

Yet, here is the Huddersfield Daily Examiner proclaiming Burzynski to be Cristiano Sousa's last chance to survive and following it up with a triumphant article on Friday about how much money has been raised, Mum has been overwhelmed by public support to raise £200k to try and save her son's life:

A mum says she has been overwhelmed by the public’s response to an appeal for money to help save her son’s life by sending him for pioneering medical treatment in America.

Ewa Sitkowska wept tears of joy as people from around the world dug deep into their pockets to raise more than £15,000 in just over two-and-a-half days so her nine-year-old son Cristiano Sousa can have treatment for a rare aggressive cancer called Embroyonal Rhabdomyosarcoma.

Just this morning, the paper has published an article entitled, Mum responds to claims American cancer clinic is selling false hope: 'I believe I am doing the right thing.' It's the saddest article of all, not to mention the most journalistically irresponsible of the three given that the newspaper is basically defending Burzynski against skeptics, who are not named and whose arguments are not presented other than very sketchily, using the mother of a dying child as the spokesperson. The article also shows just how far down the rabbit hole of false hope that Burzynski has led this unfortunate family:

After the story appeared in the Examiner, several people got in touch to say the clinic’s experimental ‘antineoplaston therapy’ cancer treatment was unproven and gave false hope to vulnerable people.

Ewa, 43, from Marsh, is aware of the concerns but said Cristiano had no other options after all other treatments had failed.

After carrying out research and listening to stories of people who have used the clinic, Ewa and partner Orlando decided it was worth a try.

I fear that this family's decision that the treatment is "worth a try" is based on anecdotes, propaganda, and pseudoscience. Certainly it's not based on evidence or science. Burzynski has had 40 years to demonstrate that ANPs are effective against cancer. He has failed to do so. I realize that it's hard to accept that Cristiano is terminally ill and there's nothing that medical science can do other than to try to palliate his symptoms. I can't imagine having to accept that news or watch a child decline and die. The family is in a horrible situation, and Cristiano is suffering, but Burzynski is not the answer.

Unfortunately, the parents have fallen into the same trap of accepting a false dichotomy that parents of Burzynski patients frequently fall prey to:

However, a handful of online donors questioned the clinic’s claims. Each critic has had a personal reply from the Ewa and Orlando, with help from Orlando’s nephew Carlos Ferreira, who speaks better English.

Carlos, speaking on behalf of the couple, said: “It is this (the Burzynski clinic) or nothing. Would anyone else sit at home and watch their child perish and do nothing about it?

See the false dichotomy? Palliative care is not "doing nothing about it." It's accepting that the child's life can't be saved and doing the best that can be done to make sure that the child's remaining time on earth is as free of suffering as possible. It's a devastatingly difficult and painful choice, but, as far as I can tell from reading everything I can find about Cristiano, it's basically the only choice left for him that makes sense. I also hate it when this choice is characterized as a choice between "doing nothing" and going all out for a cure, especially when going all out for a cure means accepting the word of a cancer quack and going to great lengths to raise hundreds of thousands of pounds. The way this heart-rending choice should be framed is as a choice between accepting reality, as hard and painful as it is, and doing the best one can to palliate Cristiano's symptoms versus subjecting a dying child to a toxic brew that has no chance of saving his life and has a high likelihood of making his suffering worse, all in a last gasp of desperation. Unfortunately, Cristiano's family is not in a place where they can see that Burzynski is providing nothing more than false hope at a high price, as he's done with so many other families over the years.

When the Texas Medical Board sanctioned Stanislaw Burzynski in March, it fined him $60,000, $20,000 of which was restitution to a patient and imposed these conditions on his continued practice:

The billing practices of the Burzynski Clinic must be monitored and patient records reviewed.
Burzynski must complete a Physicians Ethics program and undergo continuing education to obtain credits of completion in several topics of medical research. (I laughed at this one. Burzynski knows medical research regulations; it’s how he’s so good at skirting them.)
Burzynski must submit his informed consent forms to the Board for review to show that they comply with relevant regulations and laws, and each patient must receive and sign these new forms before treatment.
Burzynski must inform his patients that he owns the pharmacy requires them to use. Ownership interest disclosure must be submitted to the Board for review.
Burzynski must pass a Medical Jurisprudence Exam.

At the time, I referred to this as him basically slithering away from justice yet again. The tragic case of Cristiano Sousa shows me that I was correct. Burzynski is back in business attracting families of dying children with false hope and inducing them to pay hundreds of thousands of dollars for his ANP treatment, which has never been shown to be effective for brain cancers or any cancer and is known not to be safe. It's as though it were 2012 again. It's as though he never left. Already, social media is filling with stories of patients with deadly cancers seeking out Burzynski (and raising money), such as John Anthony West.

I fear now that the only thing that will finally stop Burzynski is his death from old age. Sadly, the family of Cristiano Sousa is following the now well-trod path of now deceased children like Amelia Saunders, Billie Bainbridge, and aura Hymas and Liza Cozad. There will be more, and that's on the Texas Medical Board. It's also on newspapers and media outlets like the Huddersfield Daily Examiner, which has basically served as a fundraising vehicle for Burzynski through Ewa Sitkowska and Cristiano Sousa (even going so far as to let them respond to criticism that they are subjecting their dying child to quackery), or even STAT News, which reported on another patient like Cristiano named Neil Fachon, who was portrayed as being stuck between the bureaucratic FDA and a "renegade doctor." Burzynski's ability to keep running his scam is also on the FDA, which continues to let him do his "clinical trials," even though after 20 years he's published almost nothing of them and what he has published shows no promise in ANPs.

Basically, the regulatory and legal system, which is supposed to protect patients from predators like Burzynski, has failed at every level. The Texas Medical Board is just the latest example. It looks as though I'm going to have to resurrect my Google Alert on Stanislaw Burzynski after having tentatively retired it after the Texas Medical Board's action.

oracknows Wed, 04/26/2017 - 03:50

Categories

Medicine

This poor child attends the same school as my daughter. The school has started fundraising efforts to send him to Burzynski. I have written to the headteachers to explain the true nature of the clinic. The whole case is awful. I never thought quackery of this magnitude would land so close to my doorstep.

People are wonderful in that they want to help, particularly one of their own. Unfortunately, it is that very altruism that Burzynski takes advantage of. This is an M.O. that he's used since at least the 1990s, where people seeking his quackery would use all the publicity they can to raise money to pay him. Since social media and sites like GoFundMe such fundraising efforts have been a lot more successful. If you need ammunition, you might want to consider these summaries of Burzynski's activities:

http://www.csicop.org/si/show/stanislaw_burzynski_four_decades_of_an_un…

http://www.csicop.org/si/show/skeptic_activists_fighting_for_burzynskis…

https://theotherburzynskipatientgroup.wordpress.com

What a horrible situation to be in.

Thank you, Ian.

Orac writes,

I fear now that the only thing that will finally stop Burzynski is his death from old age.

MJD says,

Alternative scenario:

Dr. Burzynski's staff becomes part of Orac's investigation thereafter making the organization a toxic place to work.

Basically, Burzynski’s business model fails in the absence of a consistent and reliable support staff.

Thanks Ian. One mother wrote a nice article about the importance of questioning fundraisers for Burzynski and other quacks.

I've seen a couple different articles recently in the media about cancer quackery.

The FDA made an announcement apparently that they've served notice to a bunch of snake-oil sellers. Further, I read an article just this morning on CNN where the tone of the article castigates conventional medicine for being "too optimistic" about promoting frontier cancer science.

I had to stop and wonder why Burzynski continues to fly under the radar. Yeah, okay, you stepped on some snake oil sellers... certainly, definitely true that frontier cancer medicine typically fails to live up to expectations... but why leave out someone as predatory and unethical as Burzynski? Leaving him out, it's almost like they're tacitly willing to promote him as a viable alternative.

Rereading that comment I just posted, I feel like it's just half a thought--

The FDA going after snake oil cancer sellers is a good start, but half-assed if they leave Burzynski in business. Further, CNN castigating conventional medicine for overhyping 'the-next-big-thing' in cancer medicine unduly victimizes the medical science establishment; yes, the science is easy to overhype on this one, but I feel that characterizing science as being flawed without addressing the lack of feasible alternatives unnecessarily opens the door to agents, like Burzynski, who continually try to fill the power vacuum left whenever it's revealed that science has its shortcomings.

@Michael J. Dochniak #5:

Alternative scenario

You are an arse.

I can only imagine how horrible a situation this is for his parents - no one wants to outlive their children, especially at this time in their lives.

Unfortunately, Burzynski is going to steal whatever time this child has left & make the last few months a living hell (all one has to do is read the stories at "The Other Burzynski Patient Group" to see what is in store for this family.

Yep. People ask: How can it be worse than facing impending death, a tumor growing out of the side of your face and displacing your eye? Answer: It can. From Cristiano's point of view, his parents can be distracted from caring for him by chasing money. Then they fly him to a strange country thousands of miles from home where he doesn't know anyone but his parents. Then a strange doctor pumps him full of a drug that doesn't work but can hurt him. Maybe he dies thousands of miles from home with no one but his mother rather than in his own bed, surrounded by family and friends who love him. Maybe he spends time in the pediatric ICU at Texas Children's Hospital, as so many of Burzynski's victims have before. Maybe his parents mortgage their house if their GoFundMe page doesn't generate enough money. There are so many ways it could be worse.

I have no idea what his success rates are, but if they're above 2.1 % then he's doing better than FDA approved cancer treatments. Most people with brain cancer have NO other options but non-approved treatments.

@Kelly - his results are functionally ZERO.

My broken record rhetorical question applies here: Why have so few physicians (especially the cancer experts) spoken out against Burzynski? More generally, why do so few doctors speak out against clearly dangerous quack physicians? Are physicians too busy? Are they scared of backlash (which you will get) from alt.meddies? Or, are they not being taught well enough in college and medical school to understand the difference between clinical practice which is science-based versus the hokum of quackery like Burzynski?

Well, for one thing, Burzynski has historically been very litigious. For another thing, he has no compunction about siccing his patients and supporters on critics. Most docs aren't willing to risk that.

Why is Burzynski being allowed to treat this child? I thought that was the *only* thing any of the authorities had managed, was to say that he could not treat pediatric patients after he killed that poor child (by not maintaining sodium balance).

When did that tiny limitation go away?

@kelly #12- 2.1% for what type of cancer? Some cancers are almost 100% curable with chemo (such as testicular cancer). Others have a much worse success rate, such as pancreatic cancer.

You lumping all cancer under one statistic makes me think that you might not know what you're talking about.

What I still don't understand is how the FDA has continued to let Burzynski continue these clinical trials when the data that he has published suggests ANPs are bunk. Yeah, I understand that Burzynski wields his patients like a sword and shield against critics and the FDA, but isn't there some kind of oversight of these trials? What would it take to get these trials discontinued short of Burzynski's say-so or his death?

Rich Woods (#9) writes,

You are an arse.

MJD says,

If I has a $1,000,000 I'd try and change that because mine has a crack in it. :-(

Seriously, any information on why you think I'm an arse would be appropriate in that verbal abuse without an explanation is boring and immature.

@Orac,

Great read and empathy...

"Carlos, speaking on behalf of the couple, said: “It is this (the Burzynski clinic) or nothing. Would anyone else sit at home and watch their child perish and do nothing about it?

I wish they could see that doing Burzynski is actually less than nothing. Exponentially nothing. Nothing plus a whole lot of other negatives. I ache for these families.

The school has started fundraising efforts to send him to Burzynski.

The advent of crowd-sourcing websites has been a godsend to the whole cancer-vulture industry. The scammers in Mexico and Texas can charge what they like for their snake-oil while they generously advise their victims in how to set up fund-raisers -- outsourcing the hard work of grifting.

“Carlos, speaking on behalf of the couple, said: “It is this (the Burzynski clinic) or nothing. Would anyone else sit at home and watch their child perish and do nothing about it?

I still don't see how "wanting to do something" morphs into "wanting to throw lots of money (raised from family and friends and neighbours and generous strangers) to some lying lowlife charlatan".

Is there a way to put the DEA into the picture as a somewhat sharper tool or is this totally out of their jurisdiction as his ANPs are dangerous and useless but apparently not psychoactive?

@herr doktor bimler, #21

The advent of crowd-sourcing websites has been a godsend to the whole cancer-vulture industry.

This are true words indeed. And what's one of the worst things: the people involved relentlessly appeal to our compassion for fellow humans in general and children in particular to keep the money rolling in -- not just by presenting these heartbreaking stories, but also by trying to instill a sense of guilt.
Every now and then, e-mails with this kind of fundraising goal circulate among my friends and family. Yet even when I explain in detail why I will never support this sort of unproven quackery, I often get reproachful responses about how I supposedly don't care if children die, how I 'deny them a chance', and that I'm a miser for not donating even a few bucks etcetera. I find this rather disturbing, not in the last place because these people, however good their intentions, refuse to acknowledge the fact that what they're supporting is basically a cruel, horrible fraud.

@Kelly #12

I have no idea what his success rates are, but if they’re above 2.1 % then he’s doing better than FDA approved cancer treatments.

Not only do you quote a debunked argument, you quote it incorrectly ; the "2,1%" argument is supposedly about chemotherapies for some cancers, not all "FDA approved cnacer treatments".
More explanations here : https://sciencebasedmedicine.org/chemotherapy-doesnt-work

@Kelly, #12

Most people with brain cancer have NO other options but non-approved treatments.

So what you're basically saying is that in cases where there is no known effective treatment, quacks and scammers should be free to offer whatever they come up with, unhindered by practical and moral considerations such as 'no proven effectiveness', 'selling false hope', and 'robbing dying people from their last precious months or even weeks of life'. Especially the latter is often neglected: these people spend their last days frantically raising money and undergoing useless treatments at the hands of quacks, keeping up hope against all odds, instead of spending this time with their family and friends in a far more meaningful way.

At least there is one boy with braincancer who collected a lot of money to help other people
http://www.dutchnews.nl/news/archives/2016/12/dutch-boy-raises-e600000-…

And in a reply on this article there is of course someone offering false hope.
http://seriousrequest.3fm.nl/nieuws/detail/5351484/english-information-…

Olaf
Hi there,
I have read about Tijn van Kolsteren and his deadly disease. I do Traditional Chinese Medicine, and I can probably helg Tijn. I would be glad if you can forward my message and mail address to his parents, so they can eventually get in contact with me. Best regards, Olaf

Someone needs to collate all this scamming pricks patient results and provide the statistics to every credulous reporter who blows rainbows up peoples asses about this quacks protocol. HIPA be damned, once someone has died, there is no longer a need to protect patient confidentiality. At least that way their deaths could mean something other then a huge bill to the survivors. If complicated reasons for this being a scam are too hard for reporters to understand, maybe statistics on patient survival will be more effective. After 30 years, there should be a fine baseline of ANP success rates vs conventional care vs no care. I'd wager that his stats run up against the no care side of the spectrum.

Anyone writing an article about Burzynski should view "the Other Burzynski Patient Group" first and foremost.

ScienceBlog is nothing but a BigPharma Shill...this post is full of errors and lies.

@Richard: To prevent those who don't understand these situations from accusing you of being a miser, I suggest telling them that you intend to make a donation to a reputable cancer charity, rather than providing funds to a quack (and of course making the donation!)

@Chris: Such as?

Other Chris: "ScienceBlog is nothing but a BigPharma Shill…this post is full of errors and lies"

Yawn. It is the old boring fact free Pharma Shill Gambit.

@aairfccha #22, the DEA is tasked with combating drug smuggling in the US and enforces the Controlled Substances Act. So, this is totally out of their areas of responsibility.
This is both a state medical board and FDA responsibility.
What would get the state medical board to actually, responsibly manage this would be the threat of legislation, as they have obviously abdicated their responsibilities and duties to the populace of their state.

@Chris #30, sod off, fact-less drone. No rebuttal argument, only a claim.

As for Burzynski and his activities, I can say, he makes me reconsider my adamant stance against summary execution.

@Ian Thompson, #31
I must admit that those comments from friends and family members usually happen after I try explaining that they've been tricked into supporting quackery. Nobody likes to hear that they made the wrong choice, especially in emotionally laden matters such as these. And yes, it is known that pointing out their errors only makes people dig their heels in and defend their choice... I think I'll try to be a bit more subtle next time round.

I'm rather hesitant to donate to charities in general, as a single donation is more often than not followed up by a relentless and rather aggressive barrage of pleas for more money -- even when I explicitly state 'one-time donation' in the bank or PayPal transfer. A single donation of a few dozen bucks to Planned Parenthood last February resulted in no less than 14 e-mail messages so far.
(I found that it's mostly sites such as Science Based Medicine and RationalWiki that simply accept donations without immediately begging for more :-)

I usually offer my 'charity' in other ways, e.g. spending a day every few weeks with a friend who has MS, doing everyday chores around her house and having fun going out, with me being just a stupid wheelchair drive -- you'd be amazed how often shop attendants automatically address me instead of her. Giving them a dumb look and saying "Dur?" usually fixes things :-) This is a lot more fun than just giving some money.

We tend to expend our monies personally.
We're infamous for adopting entire families, even extended families.

We have up days and down days, in that way of life.
Just like when we still had children to raise. :)

#26 Richard.
Thankyou for that clear articulation.
Its spot on.

#14
Is there not a professional ethic that
compels people in the same field to speak out?
A policeman is well versed in a policemans duties and
obligations and if he/she observes suspect behavior in
another policemans conduct i would assume a duty to
at a minimum, bring it to attention of higher ups.
Ditto virtually every field.
But particularly where life may be directly at risk.
For christs sake!
Image scum like this Burzinisky fella in a position of
control of say, a municipal potable water supply.
Using his own quack methods on how he thinks it should be.
Outside standards. Why should medical care of people be
held to less standard and oversight than potable water, as it
seems to be.

Its bloody infuriating reading Orac sometimes and the
crap he brings to light.
Its pretty clear that the medical profession and those that
regulate it are not on the same page.
It seems any freak can say and do amost anything in USA, reading Orac.
Apologies for ranting but jeez.

Legislators, get your shit together now.

The person who wrote this article is a big pharma whore. Can you not do anything better loser?

https://vimeo.com/24821365?ref=fb-v-share

This, from someone incapable of utilizing punctuation marks.
Orac is a breast cancer surgeon, so obviously he'd have little to do with "big pharma", but alas, too much experience in patients being killed by using quackery and woo instead of effective medicines.

Why all the hatred? Makes me wonder the motivation. If I had a child dying and modern medicine had nothing to offer, I might try the very same thing. I promise you I would not regret spending my last dime, fundraising etc. if I merely hoped there was a chance. Insurance companies spend thousands for chemo treatments that have very devastating side effects and little hope of full recovery. Why take away hope? Even placebos have positive results sometimes.

Ms. Welcome,

Even if it meant the child suffered more from the excess sodium? Seriously, work on your reading comprehension.

Better yet, read this article:
https://sciencebasedmedicine.org/alternative-medicine-kills-cancer-pati…

I read that part, but even the medical field has made those type errors.

"Why all the hatred?"

It comes from the pain and torture we saw in a loved one who was duped into rejecting real medicine. But if you want to skip actual treatment and/or palliative care that is fine. Just don't torture children with that nonsense.

I can certainly empathize if that has been your experience, but I can also understand a mother trying everything, even if she has concerns. Hope is a powerful thing. That is all I am saying.

I promise you I would not regret spending my last dime, fundraising etc

You would impoverish your community and network of friends for the benefit of scammers?
Yes, their business model relies on people doing exactly that.

I would expect those who donate to make their own decisions. If it were me, I would explain it was experimental and the results unknown. People should be allowed to make their own decisions. If the board is doing little, there must not be much they can prove. Trust me, I know doctors whose licensed have been pulled by the Texas State Board for far less than what you are describing!

Burzynski is a quack and a con man. His "clinical trials" are a sham that a clever lawyer finagled in order to let him continue to use his ineffective treatments, as described here:

http://www.csicop.org/si/show/stanislaw_burzynski_four_decades_of_an_un…

hdb: "Yes, their business model relies on people doing exactly that."

Yes, they feast on the gullible. Kind of like a flock scavengers fight over roadkill.

I really, really wish people would QUIT F*CKING USING TRAGEDY to promote and enrich alt-med scamsters.

I have feelings about it right now.

Yes, they feast on the gullible. Kind of like a flock scavengers fight over roadkill.

It's not so much that, as the recruitment of the gullible as franchises for the scammers' operation. The existence of GoFundMe and such means that scammers do not have to work so hard because the suckers set up crowdsourcing sites and do the scammers' work for them.
So the scavengers do not just devour the roadkill any more; first they send the roadkill out to grab whatever food they can find in the neighbourhood.

As a cancer patient myself, I will respectfully interject my opinion. I have went through "standard of care" treatment for my cancer. It has not worked. Was told palliative chemo is my only option. I have been doing an alternative treatment for several months, I feel better than I have in a year since my conventional treatments...my blood work looks perfect...and I have Hope again. I will not name it for fear that some of you good hearted folks may try to take it off the market, as there are no published results-just hundreds of personal stories of successful, long term CURE. I am also a Registered Nurse, BTW. I am educated. I can read and understand cancer statistics, studies, FDA published, and private...an above poster mentioned how cancer stats are compiled...if ya live through treatment for five years, your put in cure pile, even if cancer comes back the day after five years, if you get cancer somewhere else, or it metasizes, your taken OUT of the statistics...kind of skews (screws;) the results a bit-I understand that government can't follow every cancer patient-but as one, if my surgery, chemo, radiation, had worked, I would willingly file a report each year I survived!!! (external and internal, I won't mention the side effects I still deal with a year later;) it is easy to find sources, government and scientific sources, that negate the fact that some alternative treatments fail...sometimes because protocol wasn't followed due to a specific study and whomever the grant comes from, or who is performing the study, and their motivation, good or evil, or greed, or because they think they are smarter than everybody else! And sometimes because EVERY BODY IS DIFFERENT, an alternative treatment can work for people! It has! Conventional works for some as well, but the medical community can't exactly brag on their stats, in my opinion. As a patient, nurse, mother, human...everyone on this earth has the innate right to seek out treatments, wether you, or anyone, believes it will work or not. A parent is responsible for their child. Wether or not they choose wisely, is on THEIR soul, not your self righteous one. If people choose to give, that's their choice as well. When you gift something, it's just that-a gift. A token. HOPE. If you dont agree, then don't give-it's too simple really. The kid may die anyway. But let that mother be able to one day sleep again, knowing she did her very best to save her baby, within her ability, and where she has been lead. Do you have kids?!?! When the "good doctors" tell you to go home and watch your loved one die, or you hear those words...you cannot imagine the agony. You can't really even empathize. I'll just bet you may be looking for an alternative doctor who is will to "Practice medicine" on you. Defend your opinion. That's everyone's right. But don't step on my hope, buddy. Because I'm a cancer SURVIVOR and I APRROVE THIS MESSAGE. Stop being so uptight too. Life is short?✌️

Mr Woo has bought another Hulda Clark zapper and is planning on making his own deworming substance from green black walnut husks soaked in vodka. We will find out his referral appointment date by tomorrow.

I didn't argue yet. Hoping if I treat him carefully maybe I will have a little leverage when we see an oncologist finally.

I hate money-grubbing fraudster quacks. :-(

Jamie: I'm very sorry to read your story. As one nurse to another, though, I'm afraid you don't know near as much about cancer as you think you do. And since this is a science based site, I have to call you on your logical or factual errors.

Honestly, I hope you'll take it to heart and abandon the woo.

The reason you're feeling better is because the conventional cancer treatment probably did do you some good, even if it didn't cure your cancer. Orac has written multiple times on this issue about "cancer warriors' who abandon treatment that will cure their cancer for woo because they can't tolerate chemo or radation's side effects. They feel better for awhile, and then get sick again, usually with tragic results.

At best the woo is giving you the placebo effect. You feel better because you think you feel better. The cancer will come back in spades.

You misunderstand how the cancer statistics work. Because cancer is so difficult to treat, it is often referred to as in remission rather than as an out and out cure. Some cancers can be cured but many can't. I suspect you have one of the forms that can't, which is why we talk about 1, 3, 5, 10 year survival rates.

Hope is not hope if it is false hope. Please go back and see your oncologist. Even if he's told you that you need palliative care at this point, it would be a good idea to see where your cancer really is so you can make an informed decision.

Patients who choose palliative care and hospice often live longer than by seeking aggressive but futile care, and certainly than by using woo.

I wish you the best.

Ms. Welcome, the same goes for you: hope is not hope when it is false hope.

The placebo effect is hope. Science has proven that it works in many cases. Being science minded does not mean you ignore the entire spiritual and emotional side of a human being. It seems to me your "insolence" has clouded your ability to see a person as a whole. Your focus is very narrow. I know nothing about this particular doctor, but you are doing as much damage as he by making others feel bad about their decisions. If you want to educate, fine, educate, but do not insult! Quote statistics, state the facts, but above all, be respectful, like your title states! A compassionate, reasonable voice will go a lot further to educating than attack.

There is zero evidence that placebo effects can cure cancer or even slow down its growth. Period.

I too am in the medical field, and in my discussions among co-workers, including MDs, none of us would opt for Chemo. It is a horrible option, but most times the only one modern medicine has to offer. Not defending this MD, but I am defending the opportunity for individuals to try other options.

"Why all the hatred?"

Burzynski is despicable. For me, there are two ways to look at him. From one view, he is a fraud who does not have a cure for anything and is gulling vulnerable people and taking very large sums of money from them for his own benefit. From the other view, he is deliberately keeping a miracle cure away from general use and thus condemning people who won't pour money into his pockets to death. All evidence points to the former. He deserves nothing but contempt.

Ms. Welcome, your opinion and those of your coworkers are not valid evidence.

Now, if you can find Burzynski's raw clinical results, and compare to standard care you might have the start of an actual study. Until then, you can whine all you want about how mean everyone is... but people will still suffer with his treatment.

Well, Constance. I don't know what type of medical field you are in, what your education is, or what you do. However, I'll place your N of X numbers of coworkers against my N of X coworkers and family members, all medical, several MDs who would or HAVE opted for chemo, surgery, radiation, or a combination of the above for cancer. Personally, depending on the type, I certainly would.

RN, BSN, MSN. Unrestricted license in my state for nursing.

Ms Welcome @#57: Based on your comments, it appears that you work in a 'medical' field rather than a medical field. Either that or you are mis-representing the views of your co-workers. I have a number of friends my age with M.D. degrees and, since I'm in my mid-60s, almost all of them have either had cancer or have a family member who has. The number who have passed up chemo = zero, +/- 0.