It's full steam ahead for cancer quack Stanislaw Burzynski

I'm having flashbacks now. I feel as though it's 2012, and I was just in the midst of examining the Houston cancer quack known as Dr. Stanislaw Burzynski. As you recall, he's the Polish expat doctor who discovered peptides in the blood that he dubbed "antineoplastons" and postulated to be endogenous cancer suppressors. He ultimately made them into a cancer treatment that he's been using on patients for over 40 years now, despite never having demonstrated its efficacy or safety. Despite that, he's become a rock star in the world of alternative cancer cures, with two propaganda movies disguised as documentaries made lionizing him as the man who can cure cancers that no one else can and a steady stream of patients paying tens or hundreds of thousands of dollars for his treatment.

Indeed, this makes the third time in two months that I've written about him. Two months ago, I lamented how, once again, the Texas Medical Board had failed to strip Burzynski of his medical license (or, as I put it, Burzynski slithered away from justice once again), even though he richly deserves that and continues to represent an ongoing threat to cancer patients everywhere. Then, last week, I noted that Burzynski is back in business again, as though nothing happened when I recounted the tragic case of a British boy with an incurable tumor whose family is frantically raising money to bring him to Houston to the Burzynski Clinic for antineoplaston therapy. It was as depressing a case as I've ever discussed over the six years or so that I've been chronicling Burzynski's "career," and, remember, I've discussed the case of Amelia Saunders, whose parents were flat out lied to by Burzynski up to her death. Sadly, the last update to the story of Cristiano Sousa explains how Cancer Research UK has weighed in on Cristiano's case, explaining how Burzynski's antineoplastons have never been shown to be effective against cancer. Unfortunately, Cristiano's mother Ewa Sitkowska is so far into false hope sold by Burzynski that there appears to be no coming back:

But Ewa says she has little choice but to give her son every last chance and is aware of concerns expressed about the clinic.

After the story first 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.

And she revealed the heartache of Cristiano telling her last year: “I don’t want to live anymore” after a particularly unpleasant bout of radiotherapy.

What parent wouldn't feel as though her heart had been ripped out to hear her child say that? Unfortunately, that's how Burzynski works. He exploits such feelings to sell his unproven treatments. And he's doing it again.

Yes, he's doing it again. He's back in business, as though the Texas Medical Board action had never been. This time around, it's a child named Anna Ortega:

An Arizona family is reaching out for help after their 10-year-old daughter was diagnosed with an inoperable brain tumor and given a 0 percent chance of survival.

Anna Ortega, who has five sisters and one brother, once enjoyed soccer and playing piano competitively, but now requires help to walk. The aspiring baker and chef, who loves school because she gets to spend time with her friends, broke down in a touching video as she said she prays to live long enough to have a family of her own.

And:

Her parents, Ted and Mindi, have traveled to Texas with Anna and her six siblings for an alternative treatment plan that will cost $200,000 over the next month and is not covered by insurance. A GoFundMe page has kept supporters updated on her condition, and Porter is hosting a massive charity auction in hopes of raising enough funds to help keep Anna alive.

Texas? Yes, it is exactly what you think. It's Houston, and it's Burzynski:

Unable to accept the grim prognosis for their daughter, who pens notes every week to each of her family members expressing her gratitude for their love, they took their search to Texas. On April 17, Anna and her parents met with Dr. Burzynski at his clinic in Houston to begin a strict regimen, which involves taking four medications. The family will live near The Burzynski Clinic for the next month before returning home and outsourcing the medication from various countries for a lower cost.

Outsourcing the medication from "various countries"? It sounds as though Burzynski has finally branched out and moved his manufacturing operation out of the U.S., at least in part.

Not surprisingly, the family has a GoFundMe page, where we learn:

On Friday, March 24, 2017 Anna Ortega ran over to her mom, Mindi, mid-soccer game and told her she needed to make an appointment to see an eye doctor because her eyes were getting blurry. A few days later she said she didn't feel well and complained of double vision. Her mom picked her up from her school and noticed her eye looked like it wasn't fully able to focus. She was immediately taken to Phoenix Children's Hospital where she had a CT scan and MRI. They found 2 brain tumors, deep within the brain. One tumor was removed via surgery on Thursday, March 30th. The remaining tumor, as mentioned earlier, is inoperable.

Ted and Mindi need to go and find an innovative way to cure their daughter. The treatments at these facilities must be paid up front and in cash. We are asking for any help you feel you can give to bless this little girl's life and help Ted and Mindi Ortega as they embark on this emotional and financially stressful journey. We believe in miracles. They are extremely grateful for any help you could give on Anna's behalf.

We've heard this story before so many times with Burzynski that I've lost track of how many unfortunate children like Anna that I've discussed. Indeed, there's nothing in the video included on the GoFundMe page that I haven't seen, heard, or read about in one form or another before over the years. That doesn't mean that the video still didn't move me and even bring me to the edge of tears:

That's its intent, and Anna is a lovely girl. It's not fair that she should be facing death as she is. When she talks about the things she wants to do when she gets older at the end of the video above, I was simultaneously close to tears and angry, angry that Stanislaw Burzynski is taking advantage of the love of this family for this lovely girl to extract maximum cash out of them, all in the service of chasing false hope. You see, Anna has diffuse intrinsic pontine glioma (DIPG), which, unfortunately, seems to be one of the most common forms of cancer in patients whose family seeks out Burzynski.

Unfortunately, the family seems to have fallen under Burzynski's sway, as you can see on the website set up to raise money for Anna:

April 26, 2017:
This is us with Dr. Burzynski. Ava came along to hang out with Anna and of course meet Dr. Burzynski herself. Anna got the last of her medicines today and is now officially on 5 medications. So far so good on her body responding well to them! Yay! We know that the best combination to fight this are these 5 drugs so we are hoping her body can tolerate all 5 of them. She will continue to get blood tests twice a week to make sure her levels are all good. She ended up having high levels of acid in her urine yesterday which is a good sign that her tumor is breaking down but is a bad sign in the sense that her kidneys need to start working over drive to help cleanse her body of the toxins. We are increasing every nutrition we can to help with her kidneys as well as increasing her lemon water so they can do it on their own so she won't have to add one more medication to the list. Anna is so good and will eat anything we give her. We follow each day at the clinic by going to a juice bar where they juice fresh vegetables and fruit. We are making sure we give her the ones with the beets in it right now. Today Dr. B. told us he would like to start weening her off the steroids. We couldn't be more excited to do that! Long term steroids cause a lot of damage. Short term it gives her a ravenous appetite, sleep problems, and irritability. Anna has been such a trooper and hasn't acted irritated at all-which is unbelievable given the circumstances. I told her that it will be good to get her off them and she said "Mom, I can't walk-I think I might still be a little irritated even after I get off steroids." I laughed. She has to have someone help her to do EVERYTHING! She is so independent I'm sure it's killing her but you wouldn't know it. She is just so grateful that everyone is helping her. All the other girls are doing well. They are rockstars and it's good to be together.

Wean Anna off the steroids? If there's one thing I wouldn't trust Burzynski to do (actually, I wouldn't trust him to do anything more medically complex than give an aspirin, and even then I'd hesitate), it's to wean a brain tumor patient off of her steroids. It's not as though oncologists dose brain cancer patients with steroids willy-nilly for no reason. They do it to reduce brain swelling due to the tumor and any rsponse that the tumor has to conventional treatment. As for the five medications, I have to speculate here based on my knowledge of Burzynski. Antineoplastons are usually administered by infusion, frequently by Portacath or Hickman (long-term indwelling catheters that usually enter the subclavian or jugular veins and have to be placed surgically). So I'm not sure whether Anna's getting antineoplastons or not. However, it does appear that she's probably getting Burzynski's "make it up as you go along" version of what he calls "gene-targeted therapy," which is really just precision medicine done incompetently. In the old days, Burzynski would also make patients buy all the expensive targeted drugs from a pharmacy that he owned. I wonder if he can get away with that any more since the Texas Medical Board put his practice under scrutiny two months ago as part of its judgment against him.

No parents want to learn that their child has a uniformly deadly cancer like DIPG. Any parent, faced with that diagnosis in his child and the grim pronouncements of oncologists and surgeons, would be susceptible to a message that tells them that there might be a way to save their child. Unfortunately, in the case of Burzynski, those messages are false, and Ted and Mindi Ortega will waste the remaining time their daughter has left chasing a unicorn. They've already raised more than half their $200,000 goal, and a friend held a charity auction for her earlier this week, while the family posts updates on Anna's Facebook page.

It's a story I had hoped I wouldn't be covering again; yet I've come across two patients like this in less than a month, and I know there are more out there. Burzynski is back in business, and it's as though he never left. I'm reminded of that by these words on Anna's GoFundMe page:

The treatments at these facilities must be paid up front and in cash.

That's how Burzynski operates. That's how he's always operated. That's how he's operating again. The Texas Medical Board has utterly failed again, and Burzynski is partying like it's 1999. Even worse, it's not just UK media that's feeding the Burzynski myth and facilitating his activities. Fox 10 in Phoenix, for instance, failed journalism in the service of a feel-good human interest story, oblivious to the true nature of the story, which is a desperate family of a dying girl being taken in by a snake oil salesman. It looks as though the ABC affiliate in Phoenix has done or will do the same. These news reports, as uplifting as they seem, are deeply irresponsible and only feed the Burzynski myth.

They also show that, as much as I had thought that the news media had learned Burzynski's true nature over the last five years, I was wrong. The media remain as gullible as ever, willing accomplices to Burzynski's extraction of cash from desperate families. The human altruism that leads so many to be so willing to help a girl like Anna is a beautiful thing. It never ceases to sadden and anger me to see a man like Burzynski take advantage of that glorious human trait to sell false hope to desperate families for hundreds of thousands of dollars.

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Dang, this is right in my backyard. Last weekend I saw the upcoming fundraisers for her at a local desert store.

DPG sucks. One of the worst diagnoses a child could get. Leave it to a snake like Burzynski to prey on families with this.

By Chris Hickie (not verified) on 04 May 2017 #permalink

That guy’s got a wonderful M.O., if you’re a morally bankrupt psychopath. Seek out people who are hopeless cases, sell them false hope for a princely sum. If the disease goes into remission, whether it was because of the “treatment” or not, he’s a hero and he gets paid. If the patient dies, no one ever hears about that, but he was already paid.

At the rate he’s going it seems the only way he is ever going to be stopped is if someone does a Juan Gonzalez on him:

http://scienceblogs.com/insolence/2017/03/22/naturopaths-use-the-murder…

I rather wish though that the FDA and/or the Texas Medical Board would shut down Burzynski’s operation the way they should have, than for something like that to happen even to scum like him.

By Anonymous Coward (not verified) on 04 May 2017 #permalink

We do not advocate unlawful action on this blog, and I never advocate violence. References to killing Burzynski are inappropriate and not appreciated. Further such references will be deleted.

Houston, we have a problem.

The way he draws people in with false hope is predatory. How is he not violating federal fraud statutes by drawing patients from out-of-state?

I agree that some combination of the FDA, the TMB, and the FBI should put Burzynski out of business, and that that would be preferable to one of his victims taking the law into their own hands. But my confidence in this scenario playing out is low.

By Eric Lund (not verified) on 04 May 2017 #permalink

Dr. Burzynski is often pictured wearing a white lab coat.

Is this just theatrical or does the coat serve another purpose?

I'd recommend a stethoscope and a pen in the lab coat pocket to further enhance the imagery.

By Michael J. dochniak (not verified) on 04 May 2017 #permalink

Is [Burzynski's white coat] just theatrical or does the coat serve another purpose?

I'm not sure how much time Burzynski himself spends in the lab making ANPs. A white coat would be handy for that. But I suspect that it is mostly, if not entirely, theatrical. Burzynski has an image to uphold, after all.

By Eric Lund (not verified) on 04 May 2017 #permalink

If you want to be really upset, keep scrolling down on the "Hope for Anna" page. They started it in early April; it's not that long. You can follow the timeline--an oncologist telling them Anna has only a few months, people recommending all sorts of frightening options, people citing cases of persons with different types of brain cancer who survived to adulthood.

Then someone mentions a guy in Houston, and the haliographic videos pop up. The parents discuss how they prayed about it, and then it happens so quickly.

They also talk about how difficult their lives are right now, and it's obvious that all the traveling and hotel rooms aren't helping.

By Christine Rose (not verified) on 04 May 2017 #permalink

The great horror of Burzynski's crimes is that he steals so much more than money from the patients and their families and friends.
I wonder if his middle initial is "O". It would be so appropriate, if inadequate to express the awfulness that is Burzynski.

By Old Rockin' Dave (not verified) on 04 May 2017 #permalink

The treatments at these facilities must be paid up front and in cash.

Holy Moses on a moped.

I know these parents are desperate, and my heart cries for their little girl, but this just screams, "GRIFTER!"

Stuff like this is why we have the FDA in the first place. It's going to take another national scandal for Congress to fix the FDA and allow it to perform its mission properly.

Meaning, innocent people will die horrible deaths.

This is what it must have felt like to be Cassandra.

When did Burzynski get allowed to treat children again? I thought that was the very tiny limitation that someone (FDA, Texas Medical Board) had put on him after he killed that little boy a few years ago.
When did even that minuscule protection go away?

By JustaTech (not verified) on 04 May 2017 #permalink

I’m not sure how much time Burzynski himself spends in the lab making ANPs

Commodity chemicals bought from some Chinese factory. And his contact with patients is limited to using them as photo-op props -- he hires staff for the clinical work, so they can take the rap when patients die.

By herr doktor bimler (not verified) on 04 May 2017 #permalink

Along with journamalists, the crowd-source fund-raising sites are symbiotic partners of cancer leeches like Burzynski in the grifting ecology. The websites rae off (I think) 5% of the donations they solicit, so they have no incentive to unplug the scams.
The result is that Burzynski can increase the price for his commodity chemotherapy -- it is no longer to what individual families can afford, but to what they can extract from their broader social networks when he outsources the grifting to them.

I don't know if kidnap / extortion gangs have followed the lead of the cancer leeches, and advise their victims on how to set up GoFundMe appeals to help their families raise the ransom. If not, it is only a matter of time.

By herr doktor bimler (not verified) on 04 May 2017 #permalink

And in another journalism fail, the local newspaper of Christiano is essentially celebrating that the family is about to take him to the Burzynski Clinic (and encouraging more donations) in an article entitled "Cristiano Sousa to fly to USA for consultation after YOU help raise £32,000"

Don't disagree that these alt medical folks are vultures. That said why not also discuss the rip off that radiation treatment is. They initially pitch it as a cure then afterwards start positioning it as at best a way to temporarily shrink measurable disease. I personally sat across from two different radiologists that flat out said its very targeted and skin damage and irritation would be trivial. The reality is it was not at all very targeted and skin damage and pain was way more widespread then they let on and persisted. This result is what we hear and read from many others who have had radiation treatment. Similarly how about the fact that standard of care isn't clear to folks that pet/ct scans only measure at an accuracy of 8mm or larger suggesting that a clear pet/ct scan, or one that only has a small number of hits isn't really an accurate assessment of all the disease that can be in our body which is <8mm in size, e.g. i'd be just as worried about a bunch of disease instances that are 5mm in size which pet/ct scan doesn't catch. Also they have you drink a contrast agent which introduces more cancer causing substances into your body only to find out that they can pretty much get the readings they need w/o that contrasting agent. So sure feels like standard of care is full of vulture like protocols as well that no one talks about when focusing on how bad the alternative medicine quacks are.

@myusrn

A harsh tale, a friend of mine's had radiation as he had cancer in the neck, where it wasn't recommended to have surgery.
He had a rough time of it (back in the 90s) and feels that he has lost some of his sense of taste. But he is happy to be alive.

The treatment like Burzynski's is probably more pleasant, but has no real chance of working.

I know which I prefer.

Now I think I know what happened with the conflicting messages you were told. I had quite major surgery of the face, a while ago, the reality of which was shattered bones and metal plates.

I was told initially, if all went well, no surgery, then two days later "good news, we can do your surgery tomorrow".

I think they lied to me initially, because I was in no fit state to be told the truth and I reckon they were right.

They didn't lie about the results though, most people didn't notice any difference and the ones that did, well, I did "set" my own broken nose. So that was my bad.

"he had cancer in the neck, where it wasn’t recommended to have surgery"

A quick disclaimer here, that's what I remember being told, I'm not a doctor/ cancer surgeon.

May 16th FB posting from "Hope For Anna" page:

Next on our "To do" list is to find a Pediatric Oncologist that is willing to work with Dr. Burzynski and will be willing to administer the Avastin here (it's an IV) so we don't have to go back to Texas to get it (our original oncologist at Phoenix Children's won't do it). ( https://www.facebook.com/groups/222616204886398/?fref=nf ).

I hope the docs at Phx Children's clearly stated with a vile POS Burzynski is.

By Chris Hickie (not verified) on 19 May 2017 #permalink

There seems to be a misconception with Dr. Burzynski and his practice, he does not state that he guarantees a cure for 100% of patients, but rather you need to understand that this innovative procedure is still being developed (with MUCH higher success rates than traditional methods). With Anna's specific case, you can simply look at the MRI comparisons from Anna coming to the Doctor, to several weeks out. There is clear obvious evidence that this there are significant results. There are many other variables that are associated with curing cancer, so it is a difficult process regardless is it is continuously improving.

MRI comparison (3 weeks after Dr. Burzynski's treatment)

https://www.instagram.com/p/BT97HqJFy_s/?taken-by=hopeforanna

Shame on you for preventing many from getting this life saving treatment by ignoring those he has saved and only focusing on those who have died. Why is one company that uses electricity to complement traditional medicine have a stock price of 17 bucks when Burzynski's is still a penny stock? The treatment extends the life of glioblastoma patients 4 months! Wow! Four more months to suffer before you die so the radiation, chemo industries can profit. Burzynski has been curing glioblastoma. Your corporate sponsors will do whatever they can to prevent cures of this type of cancer.

By DAVID MOYER (not verified) on 26 Jun 2017 #permalink

No, he actually hasn't.

Perhaps you should read "The Other Burzynski Patient Group" before you comment.

Why is one company that uses electricity to complement traditional medicine have a stock price of 17 bucks when Burzynski’s is still a penny stock?

Sigh. One might recall that he was paying people with stock options for "marketing" at one point.

Anyway, it's an excellent question. Why do you think it's a penny stock? (Have you ever watched its price movements?)

Lawrence, I feel you are very much wasting your time -

I plug David Moyer Burzynski into the great Google, and my first hit was this -
https://twitter.com/beyondpsych/status/786616334171852800

That led me this -
http://beyondmentalillness.us

It seems Mr Moyer believes that "Chronic Lyme" causes mental illness, as do radio waves. He's also aWakefield and RFKjr fanboi, and, of course, believes the MMR causes autism.

He's written a few books, and one of them ask 'Can infections cause Alzheimer's disease, multiple sclerosis, Lou Gherig's Disease and mental illness?'. Can you guess the answer? I'll bet you can.

In short, he's all the way down the rabbit hole, and there is no woo too far.

So the lab coats to the "other lab coat"... "look at that guy! our lab coats are way whiter than his... who does he think he is anyway? nobody invited him to our trillion dollar industry party!"
Dr. Burzynski has treated people successfully over the years folks and it's been proven, all you need to do is look up the people that are listed on the documentary to find that out for yourselves. Secondly, I can personally attest to a young boy of 3 years old who was diagnosed with terminal cancer and his parents were told to take him home as there was nothing that could be done for him. Well, Dr. Burzynski infact DID treat him and now he's in his twenties.
You people can go puns sand down a rat hole! Burzynski has gone through both Phase I and Phase II testing and the can be researched online easily... and he passed with SUPURB results ya potlickers! Go find that out for yourselves people. And if your organization would stop putting road blocks in the way than he could get Phase III completed and move on with something that actually works for people.
Talk about hypocrisy within the Hypocratic, you all send children to the chemo chair and light them up with radiation and smile at them and walk away as your "staff" bills the hell out of the, but you have no problem dawning your white lab coats and stethoscopes around your greedy necks as you funnel in more and more "customers/clients/experiment subjects" with your needles at the ready and teddy bear blankets in hand! Hypocrats all! You should be strapped into one of those chairs and injected and tested on with your own medicine tos "see how this works out"!
Leave the man alone! At least he's trying something that DOESN'T CAUSE ADVERSE SIDE EFFECTS AND CAN BE BOUGHT AND ADMINISTERED IN THE HOME while YOU, the true snake oil perfectors, force the known killers directly into the veins of your victims at an additional cost of yet another "doctor's visit"! Tell me, how do you justify your oaths while you inject poisons into your patients? The ends justify the means is it?! Hypocrats all! Go back to your labs and self administer the same sludge your pushing in the innocent and come back and point your crooked fingers at yourselves. You strain at a gnat but force others to swallow the camel.
Your white robes give you your reward early...

By Eliaspatera (not verified) on 11 Jul 2017 #permalink

You mean the "success" stories which I find in the obituaries now?

Amazing how many of his "successful" patients are now dead.

Eliaspatera @27: One of his child patients died of the side effects of the treatment.

He has never published the results of any of his clinical trials.

If this treatment actually worked other cancer researchers and doctors would cry hallelujah and prescribe it for their patients because it is *far* more important to find treatments that work than whose name is on the discovery.

By JustaTech (not verified) on 11 Jul 2017 #permalink

Anna passed away today, less than four months from diagnosis. I'm a dipg advocate and have followed hundreds of families over many years. I have not seen one child cured or even had their lives extended by Dr B. They all die and often much faster than the average prognosis of 9 months to a year. Yes, 99% of children with dipg die but they usually do so after a longer period of time and without their family being bankrupted by this quack. Every newly diagnosed child that I know of who went to Dr B is dead. There are some people who declare that their lives were saved by this man but this is survivor bias, we rarely see the parents of these children telling their stories. But I have heard some terrible things and I absolutely believe 100% that he is a quack and a conman. I have no idea why he is allowed to continue to practice.

By Jo Bishop (not verified) on 21 Jul 2017 #permalink

Jo:

Neither do the rest of us. The system requires people with spines to run it. :(

The only reason why he is allowed to operate, and it's just a guesss, he's operating under "right to try". So he's not reporting these deaths to the FDA.