Respectful Insolence

Three weeks ago, USA TODAY published an expose of the Burzynski Clinic by Liz Szabo that was devastating in its scope and detail. Early on, Stanislaw Burzynski and his minions tried to do some damage control, with hilarious results given how inept and unconvincing his excuses were for all the violations of ethics and patient care and abuse of clinical trials detailed by Szabo. Later, Burzynski presented some abstracts at the Society of Neuro-Oncology meeting in San Francisco. Let’s just say that the case report and his reports of a phase 2 clinical trial were…similarly unimpressive. Overall, the initial Burzynski response was ineffective.

Unfortunately, when science fails, Burzynski can always play the sympathy card. And it works, too, unfortunately. Now, you’d think that after Liz Szabo’s expose about the Burzynski Clinic patients with cancer would be avoiding Burzynski like the plague, as well they should. You’d be wrong. I have little doubt that Szabo’s story has probably hurt Burzynski’s business, but he hasn’t survived and thrived for over 36 years because of a lack of skills in attracting patients and in publicizing himself. If anything, he’s shown an amazing perseverance, even when he was on trial for insurance fraud back in the 1990s. With the help of his attorney Richard Jaffe, he turned that trial into a circus, with patients demonstrating and U.S. Rep. Joe Barton (R-TX) running hearings looking into the FDA’s “persecution” of Burzynski, complete with panicked patients’s families who had been persuaded to believe that Burzynski was the only person who could save their loved ones.

Burzynski’s at it again, but in a different way.

The first example I mentioned was McKenzie Lowe, a 12-year-old girl with an inoperable brain tumor. No doubt given the idea by Burzynski, McKenzie’s family has been posting appeals to the FDA to allow McKenzie to be placed on antineoplastons as part of a compassionate use exemption. Once again, Burzynski was offering false hope to the families of cancer patients. As I said before, Burzynski can’t help McKenzie, but her family can help him by helping him change the narrative from a doctor without any training in internal medicine or oncology who is utterly unqualified to treat patients with advanced cancer who has cynically sidestepped the FDA and the Texas Medical Board for nearly 37 years while abusing the clinical trial process to keep giving a toxic, almost certainly ineffective chemotherapeutic agent to patients. And, make no mistake about it, antineoplastons (ANPs) are chemotherapy, no matter how much Burzynski tries to claim otherwise. It’s hard not to let sympathy for a child with a deadly cancer trumps reason and science if you’re a politician, and Burzynski knows that.w

Unfortunately, now there two more.

First up, there is a Jewish boy in Houston named Raphael Elisha Meir ben Devorah Cohen:

Then, the unthinkable happened. A series of symptoms in the couple’s young son, Raphael Elisha, led to the diagnosis of medulloblastoma, an aggressive form of cancer of the brain and spine. Initially, the now-6-year-old underwent surgery to remove as much of the brain tumor as possible, followed by radiation and chemotherapy.

For months after the surgery, because of a condition that developed as a result of the surgery, Rafael Elisha couldn’t speak, walk or eat. However, the tremendous faith and love of his family and the support of the family’s new friends and neighbors helped him fight through rehab. By the summer, he had been restored to his life as a fairly normal 6-year-old, and it looked as though the tumor was gone.

Then, in September 2012, on a routine MRI, his physicians saw evidence of the tumor’s return.

After this, the story is sadly familiar. Well-meaning people set up a fund to send Raphael Elisha to Houston for treatment by Stanislaw Burzynski. “How do I know this?” you might ask. After all, neither Burzynski nor antineoplastons are mentioned in this particular article. Nor are they mentioned in this Times of Israel article. They are, however mentioned in this article:

Perhaps we can all come to together to help Refael Elisha Meir ben Devorah.

Authorize the FDA to grant a compassionate use exemption to Refael Elisha Cohen for Antineoplaston therapy.

The Cohen family, of Houston, TX, is facing a battle none of us should have to go through – aggressive brain cancer in their 6-year old son Refael Elisha. Having recently received the devastating news from their doctors that “there is nothing more we can do for him,” the Cohens are turning to a last resort – Antineoplaston Therapy at the Burzyinski clinic. However, the FDA pulled their approval for this treatment in 2012 pending further clinical trials. We are told that the FDA is nearing approval to resume this treatment, but Refael Elisha does not have time to wait.

The FDA has the power to approve a “compassionate use exemption” so Refael Elisha can undergo this therapy to try and save his life.

We are asking the FDA to grant this exemption so we can continue to fight for his life.

As does this story.

And here’s the Whitehouse.gov petition:

The Cohen family, of Houston, TX, is facing a battle none of us should have to go through – aggressive brain cancer in their 6-year old son Refael Elisha. Having recently received the devastating news from their doctors that “there is nothing more we can do for him”, the Cohens are turning to a last resort – Antineoplaston Therapy at the Burzyinski clinic. However, the FDA pulled their approval for this treatment in 2012 pending further clinical trials. We are told that the FDA is nearing approval to resume this treatment, but Refael Elisha does not have time to wait.

This sort of thing infuriates me, because it really does appear as though the Cohen family is being lied to. According to this editorial, the Cohens are aware of Burzynski’s reputation. However, obviously either Burzynski, Eric Merola, or someone from the Burzynski Patient Group has been feeding them “success stories.” As I’ve explained time and time again, these “success stories” appear compelling on the surface, but if you look at them with a knowledge of how cancer progresses and how cancer treatments work it rapidly becomes apparent that they are not evidence that Burzynski’s antineoplastons can do any better against deadly cancers than conventional therapy. Think Hannah Bradley and Laura Hymas. Think Mary Jo Siegel. Think Tori Moreno. It seems as though Burzynski cured these patients, but he almost certainly did not.

In addition, Burzynski has been telling patients that the FDA is “nearing approval to resume” his clinical trials almost ever since the FDA imposed a partial clinical hold on Burzynski’s antineoplaston trials in the summer of 2012. That partial clinical hold meant that no further children could be enrolled on any of Burzynski’s clinical trials. Later, in early 2013, that partial clinical hold was extended to adults. Patients who were already receiving antineoplastons could continue to receive them, but no new patients could be enrolled in Burzynski’s clinical trials. Ever since then, Burzynski’s been dangling the hope that the FDA would lift the partial clinical hold. Now, apparently, he’s using those patients to try to get the attention of the White House. In Raphael Elisha’s case, the number of signatures is up to nearly 36,000.

Raphael Elisha is not alone, however. There’s an adult who is also going down the same road. This adult is actually a minor celebrity in that she is the wife of Sammy Hagar’s drummer. She is 46 and was diagnosed with an inoperable brainstem glioma. Her name is Liza Cozad, and to send her to the Burzynski Clinic there’s a Give Forward campaign that’s raised over $50,000 thus far. Of course, it doesn’t mention Burzynski, either, at least not in the main page. However, her Change.org petition does mention antineoplastons, although the drug is abbreviated ANP:

Six months ago, Liza was diagnosed with a deadly brainstem tumor – called a DIPG – it rarely strikes in adults (only about 20 in the U.S. each year) but is unfortunately common among brain tumors in children – and just as deadly – a year to a year and a half to live. No doctor can perform surgery to remove due to its location, chemo has consistently shown to be ineffective on Liza’s type of tumor, and even the radiologist tells her her best case scenario with radiation is it would return in 1-2 years, more aggressively, and they could no longer radiate. There is one drug that could save Liza’s life. The drug – ANP – has been approved for Phase III clinical trials by the FDA. This means it has been deemed safe (Phase I trials) and effective (Phase II trials). The FDA has continually denied Liza’s request for the treatment under a Single Patient Protocol (the FDA format under which she could be approved), saying they have questions for the manufacturer about the drug based on one patient out of hundreds’ response to sodium levels. They have cotinued with this for a year – each time the manufacturer answers all their questions, the FDA keeps coming back with more – all the time denying any new patients – including Liza – from receiving this drug the FDA has itself acknowledged to be safe and effective. This precious and caring young woman has been fighting her fight since April, but her health is declining. This drug has a documented 27% success rate on her exact kind of tumor – which is 27% better than her odds with all standard therapies – and with some children still cancer-free over 20 years later.

Recently Cozad and her husband posted a video appeal to YouTube:

There is, of course, no evidence that Burzynski has a 27% success rate in treating DIPG, but the video his heartbreaking. Cozad is seriously cross-eyed (to use a more colloquial term) and has obvious problems with her speech, indicating that the tumor is impinging on her optic nerves and affecting the nerves to her mouth and tongue. Her story is depressingly familiar to those of us who have familiarized ourselves with the Burzynski saga. After being given the diagnosis and told that radiation would only delay progression of the tumor, she went on the Internet and, as all too many patients with inoperable brain tumors do, found Stanislaw Burzynski. In her desperation, as all too many cancer patients have, Cozad latched on to the false hope that Burzynski offers. As so many of Burzynski’s patients have done, they talked to Burzynski’s “success stories,” who, being convinced themselves that Burzynski saved their lives when he almost certainly didn’t, convinced Cozad and her husband that Burzynski was the only one who could save her life.

This story has a twist, though, compared to past Burzynski stories. Clearly, they were told that Burzynski could help Cozad, were it not for that evil FDA putting a partial clinical hold on antineoplaston clinical trials. It’s truly painful to see Cozad trying so hard to tell the story. Her husband describes ANPs as a “clinically proven drug,” which it is not. Cozad states that the National Cancer Institute and FDA have “seen the studies” that prove the efficacy of ANPs against DIPG, citing the aforementioned 27% success rate. Again, there is no convincing evidence that Burzynski can do this. I cannot emphasize this enough. As I explained with the case of McKenzie Lowe, it is also not true that Dr. Burzynski is the only person who can cure DIPG and that no one ever survives it. True, survival is rare, but it is not unheard of.

The rest of the video is standard Burzynski Clinic boilerplate, obviously provided to the unfortunate couple by the Burzynski Clinic. The latest wrinkle is that apparently Cozad was told that she could go to Japan to receive antineoplastons, leading her and her husband to lament that they would have to sell their house and many of their possessions to pay $30,000 a month plus living expenses in Japan to receive “what they should be able to receive here.” They also claim that Burzynski can’t send ANPs abroad because, unlike other alternative treatments, this is a patented treatment. Now, there might be reasons why ANPs can’t be sent to Japan (although somehow that’s never stopped Hidaeki Tsuda from getting ahold of them to use in his alleged clinical trials), but just because ANPs are patented is not one of them.

I know I’ve said it all too many times, but it infuriates me to see how Burzynski so cynically uses patients with deadly cancers in his battle with the FDA. Make no mistake, that is exactly what he is doing here. He dangles false hope in front of patients like Eliza Cozad, Raphael Elisha Cohen, and McKenzie Lowe, and their families do the rest. Given the success of the Lowe family in getting their Senators to write letters to the FDA, it’s obvious that Burzynski is using these families to put pressure on the FDA. Shockingly, he’s so cynical that he’s trying to get the FDA to allow him to do exactly one of the things that he got nailed for: Abuse the clinical trial process by having his institutional review board approve single patient protocols for compassionate use. One wonders if any of these patients have any idea how Burzynski overestimates response rates. Probably not.

I have to stop now. Reading these stories depresses the hell out of me.

Comments

  1. #1 dingo199
    December 10, 2013

    FDA: You can’t do that, stop it. Now.
    Stan: But… a few more times please? See, here are people who want it because I made them want it, and I need a deposit on my new condo, and I want a new beamer for Xmas!

    What’s the bet we then see:
    FDA: OK, go on then.

  2. #2 Ellie
    December 10, 2013

    What do you suggest in your professional opinion that this woman do? Just wait to die?

  3. #3 Lawrence
    December 10, 2013

    @Ellie – how about no spending hundreds of thousands of dollars on a treatment that doesn’t work, has serious (and deadly) side-effects, and on a crank that refuses to provide any real evidence whatsoever that he has any idea what he’s doing (except conning the public into believing his lies)?

  4. #4 MikeMa
    In the cold
    December 10, 2013

    @Ellie,
    What do you do when your car needs service? Do you take it to reputable mechanic or a chop shop?
    If you need food do you go to the restaurant with the health department warnings in the window?

    I understand the desperation and the need for hope but Stan is NEVER the answer. He is a scam artist, nothing more.

  5. #5 Budget Player Cadet
    December 10, 2013

    @Ellie: I don’t know. I don’t have a good answer. But neither does Burzynski. The fact is, given his track record, any time or money spent in his clinic is time and money wasted. A favorable alternative? Staying home and dying in peace is pretty much worst-case-scenario for most cases, and that’s favorable. A less expensive homeopathic remedy would be favorable (even though it does nothing).

  6. #6 LogicLad
    Leeds UK
    December 10, 2013

    @Ellie

    Sorry to have to break it to you but the universe is a nasty place, bad things happen to good people and somethimes all you can do is make the most of the time you have left.

    The money that is would get wasted on the snake oil that Stan sells could be spent on high quality palliative care or buggering off round the world on a yacht, both would be much better uses of the cash and the time that this poor lady has left.

  7. #7 Bob Blaskiewicz (@rjblaskiewicz)
    December 10, 2013

    A lot of people here have watched this story unfold here over the last few years. It’s good enough to kvetch in the comments, but, by god, we can do more.Please help us stop this. We are trying to get Congress to investigate the FDA’s relationship to the Clinic. Go to thehoustoncancerquack.com to help. Then come back here and brag about how awesome you are!

  8. #8 Bob Blaskiewicz (@rjblaskiewicz)
    December 10, 2013

    The thing that strikes me as most fishy is that the Cohen family says that the FDA says the drugs are about to have the partial clinical hold lifted. The FDA doesn’t work like that, and it may be legally required to not talk about the progress of investigations. This has the marks of Stan’s “everything but the squeal” approach to cancer patient exploitation.

  9. #10 MadisonMD
    December 10, 2013

    @Ellie

    What do you suggest in your professional opinion that this woman do?

    I’d suggests she consider enrolling in a legitimate clinical trial. There are some promising modern ideas here–such as intra-arterial therapy and such as anti-PD1 antibody (an immunology-based therapy that has recently shown great promise in melanoma), such as molecularly-determined treatment. In fact, these unfortunate people suffering with DIPG would not need to get a second mortgage to participate in these modern studies– costs would be covered by the trial sponsor.

    If we are going to make progress, then we need to reject the failed therapies of the past and investigate new ideas. We need patients and physicians to participate so as to make the progress as rapid as possible. Typically, 15-40 patients is sufficient to determine whether we should reject a therapy and move on. We have learned a great deal about cancer over the past 40 years. If we keep using failed decade-old therapies, instead of trying new ideas based on the accumulated knowledge, then how can we have hope for the future?

  10. #11 Todd W.
    http://www.harpocratesspeaks.com
    December 10, 2013

    Sounds like he is advertising his treatment in fraudulent ways to people. Is there room for FTC to get involved?

  11. #12 AnObservingParty
    December 10, 2013

    @ MadisonMD,

    And, with legitimate clinical trials, many join them also knowing that they may help others in the future. Burzynski’s “trials” offer no such thing.

    This is disgusting. THIS is what is so upsetting about cranks and quacks, the false hope, the poster children, all on nothing. @ Bob I don’t think any of my Reps/Senators are on the appropriate committees, but I’m gonna write anyway.

  12. #13 Bob Blaskiewicz
    United States
    December 10, 2013

    @AnObservingPatry Awesome! Let us know who you have contacted at the feedback form at thehoustoncancerquack.com! It can’t hurt. And send your mail to the DISTRICT OFFICES. That seems to work best.

  13. #14 JGC
    December 10, 2013

    What do you suggest in your professional opinion that this woman do? Just wait to die?

    Ellie, this woman IS going to die. Burzynski can’t stop this from happening.

    He take her money, he can pump her full of ANP’s causing side effects that will seriously compromise the quality of her life for whatever time she has left, but that’s all he can do. It is in fact all he’s ever done.

    If it were me, I’d go with radiation’s potential to give me 1 to 2 years more years with my loved ones.

  14. #15 Denice Walter
    December 10, 2013

    OT- but are anti-vaccine thought leaders going off of their meds EVER truly OT @ RI?
    Didn’t think so.

    @ TMR, Alison MacNeil ( also of Fearless Parent Radio) reports on her own adventures taking anti-depressants “for ages” ( including Prozac and a newer one)- she has “tapered” off this fall after taking her son off his ( unnamed) meds last year.

    She finds herself being more ‘raw” and “loud” than she was before. She could have fooled me.

    She feels that her own depression was set-off by the HepB series she had to take as a requirement for being a social worker – despite depression being in her family- and that taking Prozac may have also harmed her son during gestation and nursing.

    So the “new” TM, FP Alison will not be as toned down as she’s been in the past.

    I know that Orac and several others here are as big fans of her as I am. Heh.

  15. #16 Andreas Johansson
    December 10, 2013

    Denice Walter:

    she has “tapered” off this fall after taking her son off his ( unnamed) meds last year.

    So she went gently off her own medication, but made her son quit overnight? Call me a horrible coldhearted cynic, but that sounds like an awful lot like she’s willing to make greater sacrifices on her son’s behalf than on her own in following alt-med dogma.

  16. #17 mho
    December 10, 2013

    The tactic of appealing for compassionate use seems to be the next new thing. In Texas this September Andrea Sloan, an ovarian cancer patient, garnered publicity that included a CBS interview. I learned of her on internet chat boards. She got over a 100,000 change.org sigs in her effort to strong arm a pharmaceutical company into giving her their drug. A drug that had not even completed phase 1 trials.
    Another drug company stepped in, and on condition of her shutting up, agreed to treat her with a similar drug. She taught everyone a powerful lesson in PR-how to jump the queue and demand what you think you want, fair processes and evidence be damned.

  17. #18 lsm
    December 10, 2013

    @ Ellie: your comment reflects the desperate situation these cancer patients find themselves in, and everyone here gets it. That’s the crux of it: Burzynski preys upon the desperate. The real tragedy is about the cancer patients subjected to his inept treatments, not those left behind. The medical consensus worldwide is that Burzynski is a fraud.

    A thorough reading of theotherburzynskipatientgroup.com reveals his ineptness.

  18. #19 Denice Walter
    December 10, 2013

    @ Andreas Johansson:

    To be truthful, she doesn’t say that – probably somewhere in her vast collection of shrieking articles there is more detail- and she does mention that her doctor was aware she was stopping herself.
    HOWEVER she believes that meds like anti-biotics and vaccines cause all manner of illness and conditions like ASDs.

    Although I do read ALL of this stuff, I don’t always recall every tiny detail.
    Please, I’m not THAT perfect.

  19. #20 Sarah A
    December 10, 2013

    She got over a 100,000 change.org sigs in her effort to strong arm a pharmaceutical company into giving her their drug. A drug that had not even completed phase 1 trials

    And here I thought pushing untested drugs was what Big Bad Pharma did.

  20. #21 Politicalguineapig
    December 10, 2013

    DW: As someone who was on and off depression meds, I’d like to sympathize with her-but she and the rest are such unpleasant people I just can’t. I was never on prozac, but on a couple of the clones, and they just didn’t work.

  21. #22 Politicalguineapig
    December 10, 2013

    For me. A few friends have had good results, so I just keep my mouth shut about my non-results.

  22. #23 Johanna
    December 10, 2013

    Just speaking from my own experience, finding an antidepressant that works for you is tougher than finding a good pair of shoes to go with the dress you already shelled out for. They’re all different and sometimes you have to shop around…

  23. #24 Denice Walter
    December 10, 2013

    @ PGP:
    @ Johanna:

    Some of her statements about consensus science make it hard for me to find any sympathy for her- she actively misleads people as her calling. -btw- Many of the anti-vaxxers find meds as despicable as the woo-meisters do.

    While I’ve never been seriously depressed, I do have tendencies towards moroseness myself- as do many of my relatives- although no one ever was disabled by it.- it’s NOT severe depression- rather than us having any magical ways of dealing with it.

    A few people I hang around with DO, at times, have more serious problems- one most likely exacerbated by an incidence of terrorism in her family. Another has had a long history of trying – and dropping- meds- he hasn’t been able to find a ‘good fit’, as Johanna says.

    Both of them have evolved means of coping with depression including caffeine, exercise, work, distraction, having varied interests, writing, outdoor acitivities, talking about it etc.

    I would never say that drugs are totallly the answer but they certainly have helped many people to live better and function on a higher level- they may be necessary when the condition is disabling.

    I’ve also had an academic as well as a personal interest in the topic. I find the statements woo-meisters make about these meds heartless and dangerous to others’ well-being.

  24. #25 Andreas Johansson
    December 11, 2013

    Denice Walter wrote:

    To be truthful, she doesn’t say that

    Ah, OK. I’ll count that as good news of a sort.

    While at anecdotes about antidepressants, I was lucky in that the first one I tried worked reasonably well. It didn’t bring me to recovery by itself, but it certainly helped. My sister has been less lucky, having gone through a bunch before finding something that worked well.

  25. #26 Bob G
    los Angeles
    December 11, 2013

    KCBS television in Los Angeles ran the Liza Cozad story tonight on the 11 PM news. The story included the claim of 27% success without any editorial followup and included mention of ANP and the word antineoplastons, and showed a picture of a building saying Burzynski Clinic. A remarkable example of the lack of journalistic standards. Actually quite shocking to see it presented in such a raw way.

  26. #27 Ellie
    December 11, 2013

    Thanks for all of your comments. Maybe I don’t get it, but maybe someone can explain – She states in the video that there are patients who have been helped by this drug. Is that nonsense? Sorry, just trying to understand.

  27. #28 Bob Blaskiewicz (@rjblaskiewicz)
    December 11, 2013

    Ellie: Yes. We have patients who are alive, which is different than “patients who were helped by the treatment.” Clinical trials are how we separate misdiagnoses and spontaneous remissions from actual cures. Burzynski has never done that, so he is in no position to say there is any cure rate.

  28. #29 Mephistopheles O'Brien
    December 11, 2013

    Ellie – It has been pointed out that the Burynski lab has registered multiple trials of this drug, but that the data has not been published in a comprehensive way in a peer-reviewed publication. The data that is available does not reasonably show that the drug is either safe or effective. There are some anecdotes from people who believe that their cancers were cured by the Burzynski clinic; there are also anecdotes that cancers are cured by holy water and a pilgrimage to Lourdes.

    If Dr. Burzynski were to publish data from his trials and they showed that his treatments produced results as good as or better than the current standard of care for the same cancer, I’m sure that would remove people’s objections.

  29. #30 Antaeus Feldspar
    December 11, 2013

    Ellie –

    I believe I can explain it, but I need to start with some basics first, so bear with me for a sentence or two.

    One of the most common logical mistakes is to assume a statement of category membership remains true when it’s reversed. The statement “All Germans are Europeans” is completely correct, but reverse it so that it’s “All Europeans are Germans” and it’s false.

    It’s true that if there is anyone in the category “people helped by Burzynski’s treatment”, they are also in the category “people who improved after treatment by Burzynski”. But we cannot conclude from that, “Oh, then ‘everyone who improved after treatment by Burzynski’ is in the category ‘people helped by Burzynski’s treatment’”.

    Is it possible that at least some of the people who improved after Burzynski’s treatment really were helped by Burzynski’s treatment? Yes, it’s possible. But we just simply can’t conclude it from the data we have; from the data we have, we can’t even safely conclude that there is anyone in the category “helped by Burzynski’s treatment”.

    If we had a volume of reliable data showing that patients who received Burzynski’s treatment improved more often than patients who had similar conditions and did not receive Burzynski’s treatment, then we’d have some basis for thinking “Oh, then Burzynski’s treatment really does help people, at least some of them.” The only reason Burzynski has been allowed to treat anyone with his unproven regimens is an attempt to collect exactly such data.

    Unfortunately, we now know that it’s exactly that kind of patient data which Burzynski has been destroying.

  30. #31 JGC
    December 11, 2013

    She states in the video that there are patients who have been helped by this drug. Is that nonsense?

    To the best that can determined, yes. It’s nonsense. While people who Butzynski’s treated with ANP’s have gone on to survive if you examine their cases they are people who had previously received standard of care treatment like surgery, chemo or radiation. There’s no reason to ascribe theri survival to the ANP treatment rather than the previous standard of care treatment, or even spontaneous remission (which does occur).

    Meanwhile, it’s a trivial exercise to identify cases where patients have failed to survive after receiving ANP’s, or even cases where patients have died to to side effects of ANP treatment (such as the child’s death that caused the FDA to issue a clinical hold.)

    But the take home message re: Burzynski is really this: Nurzynski has initiated and enrolled subjects into more than 60 Phase II clinical trials over the past couple of decades. He has completed only 1, and never published the complete results from that study. His claims regarding ANP efficacy are supported only by cherry picked patient testimonials.

    Why do you think that is? If he’s serious about proving to the world that ANP’s work, why is he sitting on 20 years of clinical trail results? I can think of only two reasons:

    First, the results prove that ANP’s aren’t effective, and he’s sitting on them to keep charging desparate patients a great deal of money for something he knows won’t help them.

    In which case he’s a fraud.

    Or secondly (and ethically far worse) the results show ANP’s do work but he’s sitting on them to maintain a private and very lucrative monopoly on a proven cure for cancer, thereby denying all cancer victims who cannot afford his clinic’s fees, or the costs of traveling to Texas, etc., access to a cure each and every year.

    In which case he’s a monster.

  31. #32 Bob G
    Los Angeles
    December 11, 2013

    I understand that the Burzynski approach is not only unproved, it is also very old, going back at least to the 1970s. If it worked, it would have been shown to work long ago. I think that is the message that is not being sent to the world. All that having been said, it makes sense to look for a clinical trial of something that has some chance of helping. The problem for Liza Cozad is that she does not fit the age criteria for most of the studies. There appears to be one study that is open to older patients, but it is far away, and it’s not clear that the researchers are even ready to start their study as yet.

    So Cozad is stuck in a Catch 22 where standard treatment options are not promising, and where she is excluded from the dozen or so clinical trials that are currently recruiting in this country. This is where some compassionate use exemption might be appropriate. Let the FDA create a list of compassionate use approaches that would be legally open to near-terminal patients who are willing to try anything to maintain hope. I suspect that Burzynski would be left off that list, considering his unwillingness to play by the normal rules and based on the lack of demonstrated effectiveness over the past three decades, but newer, more intelligent possibilities might be made available to people who are dying anyway. How to evaluate any survival from any of these treatments is another question, but at least the political problem would abate, and perhaps somebody would be helped by some treatment.

    Can anyone explain why this would or would not be an appropriate approach? I understand that availability of custom synthesized creations such as a particular monoclonal antibody could be an issue, but there appear to be some mAbs and other drugs that are, in fact, available.

    I believe that the long term solution to the problem is to repair the funding problems in NIH so that serious research will get funded. Obviously the biochemistry and genetics of brain tumors can use additional study.

  32. […] Even after the USA TODAY report, Stanislaw Burzynski manages to enlist cancer patients to his cause Orac, Respectful Insolence, 10/12/13 […]

  33. #34 Dr. Who Fan
    December 17, 2013

    I would suggest that people enroll in clinical trials, if they meet the criteria, and try dietary changes, which while not universally applicable based on current research, are at least ot harmful.

    http://t.today.com/health/healthy-diet-may-reverse-aging-study-finds-4B11175619

  34. #35 Sammy Finkelman
    December 17, 2013

    @Bob G

    BG> Let the FDA create a list of compassionate use approaches that would be legally open to near-terminal patients who are willing to try anything to maintain hope.

    Inspired by this, I created a petition:

    http://wh.gov/l8waS

    OR:

    https://petitions.whitehouse.gov/petition/have-fda-create-and-post-web-list-compassionate-use-approaches-are-believed-have-possible-merit/wwwzXC7Q

    We petition the obama administration to: Have the FDA create and post on the web a list of compassionate use approaches that are believed to have possible merit.

    Explanation: What’s truly good doesn’t usually get publicity because the people doing the research are afraid something will interfere with its approval, but only things that don’t work get publicity. But people think the publicity means something because they don’t understand the way medical research works now, and has worked over the past 60 to 70 years. Not like it used to be. Nothing truly new can ever be tried. Everything being tried has been worked on for 20- 30 or more years. If people doing research get an idea that maybe if they modified a treatment somewhat it would work better/have less side effects, they can’t change it. Still, there may be any number of good treatments backlogged. If the FDA gave publicity to people who did not dare make publicity themselves, many people could be helped.

  35. #36 Susan
    December 25, 2013

    On this website to raise money for Raphael Cohen (http://www.youcaring.com/medical-fundraiser/help-raphael-elisha-meir-ben-devorah-cohen/104108), it states:

    “…the Burzinsky Clinic has committed to treating Raphael Elisha Meir free of charge”

    Thoughts?

  36. #37 Narad
    December 25, 2013

    “…the Burzinsky Clinic has committed to treating Raphael Elisha Meir free of charge”

    Thoughts?

    The financials of BZYR are sufficiently complicated that it’s hard to know whether this really means anything. I can’t see behind the scenes, but there’s the obvious question what the $115,904 is for, then.

  37. #38 Woo Fighter
    December 25, 2013

    Narad,

    Not to mention the family also already lives in Houston, apparently only a few minutes away from the clinic. So there are no travel, lodging, or food costs involved. Maybe a few bucks gas money.

    Maybe the treatment (cost of the medicine) will be free but will that also apply to the famous monthly “case management fees”? Burzynski and fans have long claimed that the ANPs were always given away for free. It’s sort of like getting free parts but you pay through the nose for the labour at a car repair shop.

  38. […] “grass roots” campaigns, often by falsely asserting that Burzynski has a cure, is a repeated feature of the Burzynski […]

  39. […] Even after the USA TODAY report, Stanislaw Burzynski manages to enlist cancer patients to his cause … (scienceblogs.com) […]

  40. […] to be able to do is too terrible to contemplate. This is why families like those of McKenzie Lowe, Raphael Elisha Meir ben Devorah Cohen, and Eliza Cozad, for example, go to such lengths to raise money. Even after Szabo’s expose, […]

  41. #42 irene
    nevada
    March 6, 2014

    please keep me informed about any clinical trials etc. Re. Cancer as my love Michael has been battling with this for 3 yrs . now had gone into brain and blood ext. Dr’s say stage 4 terminal but we think not any Info. At this time will be appreciated !!! Thank you and god. Bless everyone of you .

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