It figures that I couldn’t go three weeks into 2014 without the topic of Stanislaw Burzynski rearing its ugly head. I had hoped to make it to February or even beyond before feeling the gravitational tug of the wretched hive of ignominious and unethical behavior, but here we are, only 20 days into the new year. So be it.
2013 finished with serious setbacks for Stanislaw Burzynski and his unproven cancer treatment that he dubbed “antineoplastons” (ANPs) way back in the early 1970s. As you might recall, in November, two things happened. First, the FDA released its initial reports on its inspection of the Burzynski Clinic and Burzynski Research Institute (BRI) carried out from January to March 2013. They were damning in the extreme, pointing out the shoddy operating methods of the institutional review board (IRB) used by the BRI to approve and oversee Burzynski’s “clinical trials” (and I use the term loosely) of ANPs. Violations included using expedited approvals to review single patient protocols, something so far outside the purview of what the expedited approval process was intended for, namely approving minor tweaks to human subjects research protocols without requiring a full meeting of the IRB, that the FDA called Burzynski out for it. Other violations included failure to report serious adverse events (SAEs) and adverse events (AEs) to the FDA and/or the IRB, failure to follow proper informed consent procedures, failure to determine that risks to subjects were minimized and that risks to subjects were reasonable in relation to anticipated benefits, if any, and a lot of other violations, which are listed in my previous post on the subject.
Later in November, Liz Szabo of USA TODAY published a fantastic expose of Burzynski entitled “Doctor accused of selling false hope to families,” in which, in addition to many of the violations revealed by the FDA, it was further reported that the child whose death in the summer of 2012 triggered the FDA investigation was Josia Cotto, and that the child died of hypernatremia (elevated sodium levels in the blood) caused by ANP therapy. In response to the reports of shoddy record keeping, lack of ethics, and contributing to the death of a child, Burzynski was his characteristically cuddly self, referring to his critics as “hooligans” and “hired assassins,” while claiming that they “pretend they got sick and would like to extort money from us.” When last I wrote about Burzynski in November, his empire was struggling to strike back. Eric Merola, the film maker responsible for two pro-Burzynski propaganda movies Burzynski: Cancer Is A Serious Business and Burzynski: Cancer Is A Serious Business, Part 2, likened USA TODAY to everything from Nazi propaganda under Joseph Goebbels, to slave masters, and to the Westboro Baptist Church protesting at the funerals of gay soldiers killed in the line of duty. Meanwhile Burzynski himself tried to answer the FDA findings and failed miserably, nor did his poster presentation of singularly unimpressive results at the Society of Neuro-Oncology Meeting right before Thanksgiving help. The year ended with the Texas Medical Board using the FDA’s findings as part of the basis of charging Burzynski with false advertising, meaning that Burzynski will be spending a lot of time defending himself against the TMB in 2014.
Unfortunately, beginning in December, Burzynski and his allies decided to go back to the future, so to speak (or maybe just back to the 1990s) and resurrect the campaign that worked so well for them the last time Burzynski’s back was against the wall. Unfortunately, this strategy, rooted as it is in using cancer patients to lobby Congress to force the FDA to allow Burzynski to use antineoplastons, could work. Pro-Burzynski forces, in a nod to the past, have even hired the same lobbyist who, or so it is claimed by the pro-Burzynski forces, succeeded so brilliantly in the mid-1990s in persuading Rep. Joe Barton (R-TX), then the chair of the House Subcommittee on Oversight and Investigations, to “investigate” the FDA’s “harassment” of Burzynski.
Using patients as human shields and missiles
If you want to understand Burzynski’s new strategy to keep using ANPs, you have but to go back and examine his previous strategy, which was to milk dying cancer patients for every bit of human sympathy they can evoke from lawmakers and the public. I realize that the way I chose to phrase that might be offensive to some readers, but how Burzynski has cynically exploited the sympathy we all feel for children dying of incurable brain tumors offends me, and he’s at it again. For example, there is the case of MacKenzie Lowe, a 12-year-old girl with an inoperable brain tumor whose story, entitled Child Cancer Patient Petitions For Brain Tumor Treatment Not Yet Approved By The FDA was published in The Huffington Post at the end of November:
Last Thanksgiving, 12-year-old McKenzie Lowe was diagnosed with an inoperable brain tumor. Her family is petitioning New Hampshire’s governor to allow McKenzie to undergo Antineoplastons therapy, a treatment not approved by the FDA. The FDA has allowed 471 “compassionate use” exemptions to date, and McKenzie’s grandfather, Frank LaFountain, hopes she’ll be next in line.
“We’ve talked to survivors of this drug, who had the same condition McKenzie has,” he told HuffPost Live host Nancy Redd. “People say there aren’t any, but we know them. We’ve talked to them, and that’s what makes us so passionate about getting her this particular drug.”
And here’s the video:
Only a heartless bastard could fail to be moved by McKenzie’s story, which is, sadly, typical for pediatric patients with brain cancers. HuffPo pulled out all the stops to emphasize McKenzie’s cuteness and what a nice girl she is, while buying completely into the propaganda line that the Burzynski Clinic promotes.
It pained me to watch that video. It really did. But it also made me angry. Once again, Burzynski is offering false hope to families of cancer patients, and HuffPo deserves nothing but opprobrium for promoting the Change.org petition, which Eric Merola, producer of two propaganda “documentaries” for Burzynski is also promoting. As desperate as McKenzie’s situation is, Burzynski can’t help her. However, her family can help him, most likely unwittingly, by changing 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.
The Change.org petition for McKenzie Lowe, as well-meaning as its sponsors seem to be, is exceedingly misguided. The Friends of McKenzie Lowe are petitioning FDA Commissioner Margaret Hamburg to grant a compassionate use exemption for McKenzie so that Burzynski can treat her with ANPs. Recall that one of the very offenses that got Burzynski into hot water with the FDA was his investigational review board’s (IRB) history of playing fast and loose with single patient use protocols, in which patients were approved through the expedited approval process, which was never intended to be used for this purpose. Putting patients on compassionate single patient use requires full approval by the entire IRB. In essence, this petition is asking the FDA Commissioner to ignore those findings and let Burzynski do it again for McKenzie Lowe. One also wonders whether the Lowes know other things about Burzynski. For instance, the FDA found that he had destroyed original patient records and, most importantly of all, misclassified partial and complete responses. Suffice to say, Burzynski’s explanations are underwhelming and unconvincing.
Finally, there is the oft-repeated claim that Burzynski is the only person who has ever cured the cancer that McKenzie has. These days it is Burzynski’s favorite line, a line often parroted by his minions, particularly Eric Merola. Would that it were true! What Burzynski proponents can’t understand is that I would be very happy if there were a treatment that could actually cure children with diffuse intrinsic pontine glioma (DIPG). As I’ve discussed many times before, nearly all of Burzynski’s “cancer cure” testimonials, when examined more closely, are highly dubious with respect to whether it was actually ANPs that cured the tumor, with not a single one of them being particularly convincing when examined closely. Either there’s insufficient information (i.e., the timeline is vague), or there exists the possibility of misdiagnosis, or the mistaking of the natural reversal of pseudoprogression for an actual antitumor effect. Moreover, brainstem gliomas in children are a heterogeneous group of tumors. Moreover, many of these tumors aren’t biopsied because of their location, and are usually diagnosed by their appearance on MRI. However, MRIs, as discussed in the case of Tori Moreno, can sometimes find masses that look for all the world like tumors but aren’t. Moreover, contrary to Burzynski’s claim, there are occasional long-term survivors, some of whom received little or no therapy, such Connor Frankenberg, a child from Germany, and two patients who underwent spontaneous remission. (Yes, I know that one of the children listed is a Burzynski patient, Tori Moreno. One notes that the DIPG Registry does not mention Burzynski or ANPs at all.)
The DIPG Registry concludes that, although the vast majority of children with DIPGs do poorly:
The bottom line is: 1) we really don’t understand DIPGs, and 2) there are children who have been diagnosed with DIPGs-based on the incomplete knowledge that we currently have- who truly have had spontaneous regression of their tumors and 3) most of the children with reports of spontaneous regression have been very young.
The big problem is that, like many dubious cancer doctors, Burzynski appears not to keep good enough records to demonstrate one way or the other whether he can cure DIPG, and we already know he misclassified partial and complete responses. In brief, DIPG is a horrible disease, with only 10% surviving beyond two years, and there is no convincing evidence that Burzynski can do any better than conventional oncology, much less cure DIPG, as much as he repeats the claim that he can. Worse, he hasn’t published a single one of his completed phase II clinical trials, even though he’s had well over 15 years to complete them. With tumors this lethal, most such trials should be completed within five years.
Unfortunately, Mackenzie Lowe isn’t the only such patient being used by Burzynski’s minions. Unfortunately, now there are now at least two more.
First up, there is a Jewish boy in Houston named Raphael Elisha 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.
Unfortunately, Cohen’s tumor recurred in September 2012. After this, the story became sadly familiar. Well-meaning people set up a fund to send Raphael Elisha to Houston for treatment by Stanislaw Burzynski, as described in this article:
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.
Several other stories were written, including this story and a blog post by Ariela Davis for the Times of Israel that gave Cohen’s story international attention. Here’s the Whitehouse.gov petition, which uses language very similar to what is quoted above.
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 apparently 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, and in Cohen’s case he has been very successful.
Raphael Elisha is not alone, however. There’s an adult who is also going down the same road. This adult happens to be 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. Her Change.org petition asks for the same thing as MacKenzie Lowe and Elisha Cohen’s families are asking:
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 [sic] 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 is heartbreaking. Her story is depressingly familiar to those of us who know about 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.
These are the patients are petitioning various Senators and Representatives to lean on the FDA to grant the compassionate use exemption. This is what those of us who want to protect cancer patients from this sort of predation are against, parents of children with cancer who have been convinced that Burzynski is their family member’s only hope. What human being doesn’t have difficulty saying no to such an appeal, even when he knows the family’s desperation has led them down a dark path to viewing Burzynski as the only man who can save their loved one? That they are wrong is almost beside the point. What politician can say no to such an appeal? At the very least, they will look into it and put pressure on the FDA. Meanwhile those of us who stand up and say no, who try to point out that Burzynski can’t save these patients, that they are being used by him so that he can re-open his ANP clinical trials, are pummeled with arguments like the one by Randy Barnes that we should “respect the parents’ choice.” After pointing out that he is “not a fan” of the Burzynski Clinic, and “agrees with many of the criticisms leveled at Stanislaw Burzynski and his treatments,” he asserts that “Raphael Elisha’s parents are the only ones with the right and responsibility to make the best decisions they can in a horrible situation that no one who has not faced the loss of a child can possibly understand.” He then concludes:
If you choose not to sign the petition that is fine, but please, allow the Cohens the dignity they deserve by respecting their right to make the choices they deem fit for their child. Publicly fighting the Burzynski Clinic in Raphael Elisha’s name will only bring more pain to an already suffering family.
This is the argument we’re up against as well, an argument that is every bit as invalid as when it is used to defend, for example, the family of Sarah Hershberger for relying on quackery instead of chemotherapy to treat a deadly lymphoma. We can respect the parents’ decision, to the extent that they are the parents. We can try to understand the desperation that led them to it, even though they are aware of all the criticisms of Burzynski. Most parents can only imagine how they would react under similar circumstances. Even I couldn’t guarantee that I wouldn’t be tempted by the blandishments of Burzynski and his followers if I were in the same position as the Cohens. However, sympathy and respect do not equal agreement, nor do they require us to acquiesce and just “shut up” when the Cohen’s grief and desperation lead them to do something profoundly harmful to public health, to use the power of their story to persuade lawmakers to call off the FDA.
The Alliance for Natural Health joins the fray
Right after the holidays, one of the most prominent pro-quackery advocacy groups in the country, scourge of any legislator trying to regulate supplements or “natural medicine,” the Alliance for Natural Health USA (ANH-USA) launched a series of articles urging its members and followers to write to their legislators to lean on the FDA to allow Burzynski to treat patients under compassionate use protocols:
- Exclusive: Inside USA Today’s Smear Campaign Against Dr. Burzynski
- Dying Patients Denied Access to Dr. Burzynski’s Potentially Lifesaving Treatment
If you want to understand how much contempt the ANH-USA has for its audience, I’ll show you briefly through one passage from one of these articles. The ANH-USA complains that Liz Szabo:
Cites the lack of published random-controlled trials (RCTs) as evidence of antineoplastons’ uselessness, while omitting the fact that the efficacy of the treatment has recently been confirmed by a randomized, clinical trial by Japanese researchers. And of course ANH-USA has repeatedly had to point out that RCT’s are enormously expensive. Nobody but drug companies can afford them, and they will usually only undertake them if the treatment is under patent and therefore a government enforced monopoly. In addition, there is growing evidence that RCTs, particularly in the context of individualized treatments, should no longer be considered the “gold standard” for drug efficacy.
Of course, this is the same nonsense Burzynski’s been peddling for the last couple of years about a vaporware randomized clinical trial carried out by Hidaeki Tsuda in Japan. This trial featured prominently in Eric Merola’s second movie. Unfortunately, although the trial sounds interesting as described in Merola’s movie, it has not yet been published. Now take a look at the article linked to in the ANH diatribe. It was published in Oncology Reports (not the greatest of cancer journals) entitled “Demethylation effect of the antineoplaston AS2-1 on genes in colon cancer cells”. Do you notice something? I did, immediately. More accurately, I didn’t notice something, and that something was a clinical trial. This is nothing more than yet another in vitro study, and it’s not even that compelling of one, given that it uses enormous concentrations of AS-2, 2 mg/ml, way higher than is likely to be achievable in the bloodstream, even using the massive doses of ANPs that Burzynski advocates using. Yes, Burzynski really does have that much contempt for you that he tries to pass off an in vitro study as a clinical trial.
The rest of the ANH-USA’s attacks are largely nothing more than regurgitations of past Burzynski excuses and attacks. For example, in one article the ANH-USA twists the cases of Liza Cozad and McKenzie Lowe to its own ends, all but saying that the FDA is evilly laughing and twirling its metaphorical mustache as Cozad and Lowe die, as USA TODAY dutifully promotes the agenda of its pharma masters and the FDA. Hilariously, there was a third article claiming that the FDA violated patient privacy by providing Szabo with medical records of a patient without the parents’ permission. If you click on the link now, there’s nothing there. The article has apparently been taken down. There are, however, multiple links to it elsewhere, for example, here, here, here (our old friend Merola) and here. The article still shows up on the ANH sitemap, but there’s nothing there. Apparently, the ANH took it down, which is probably because it was full of misinformation and lies. I only wish I had saved a screenshot or web archive of the article. My mistake.
Bringing it all together: The ANP Coalition
It’s taken nine months since Burzynski supporters revealed in a video of the panel discussion after a screening of Eric Merola’s movie that various Burzynski patient groups were planning to form an organization to lobby Congress for fast track approval of ANPs. Indeed, Merola and his merry band of Burzynski sycophants were quite open about wanting fast track approval for ANPs so that Burzynski could then prescribe them off-label for virtually any cancer and presumably could also sell them to any doctor who wanted to use them for whatever purpose. Of course, advertising a drug for off-label uses is against the law, which is why the FDA takes such a dim view of it, but “word of mouth” and ANP-friendly groups like the ANH would make sure that word got around fast. Unfortunately for Stash, with the deficiencies of the procedures of the Burzynski Clinic and BRI with respect to running clinical trials having been laid bare in Liz Szabo’s article in USA TODAY, fast track approval for ANPs for glioblastoma is, at best, highly unlikely. So Burzynski’s allies have fallen back on lobbying Congress to lean on the FDA to allow single patient protocols, sometimes called “compassionate use” protocols, to allow Burzynski to treat patients with ANPs even though his clinical trials are shut down. To do this, they have formed a group called the ANP Coalition:
It is our fundamental belief that the discovery of Antineoplastons (ANP) can and will herald a new age of medical science and subsequent advancements in the treatment of previously incurable diseases. This benign yet effective drug contradicts the paradigm that cancer treatments have to be harmful to be effective, and redirects modern medicine back to its salient principal Primum non nocere, “first, do no harm”.
How does the ANP Coalition intend to accomplish our mission?
We will accomplish our mission by focusing on four main goals:
- To educate the public as to the importance and benefits of ANP.
- To advocate for patients who need access to ANP for medical conditions.
- To expedite regulatory approval for ANP thereby making it available to all.
- To further research and development of ANP.
Consistent with a lot of the rhetoric used by Eric Merola and the Burzynski Patient Group, the rhetoric on the ANP Coalition site is apocalyptic, painting the battle as nothing less than one of good versus evil:
This is not a time for all good men to act; it is a time when all good people must act. We live in an age of awareness, where technology has become the great equalizer. With technology comes communication, and through communication we can educate! Once armed with education, propaganda withers and dies!
This website is designed with the sole purpose of educating the public and exposing the truth. The battle starts here in cyber space, but the war is won in the real world, by real people who participate in real ways. It will be won by you!
We are no longer an organization of patients connected by a cure; we are the collective who will not allow evil to triumph.
I can provide a hint of why the rhetoric is so amped up. One has only to look at who owns the ANPcoalition.org. The domain is registered through Domains By Proxy, which makes one wonder why the ANP Coalition would want to hide who owns the domain. First of all, the pictures on the Contact page reveal several old friends, including Ric Schiff, whose wife Laura, not coincidentally, owns a related domain, theotheranpcoalition.org, and registered it under her real name and also appears on the Contact page. (A screenshot has been saved, of course.) Also there is Mary Jo Siegel and her husband Steve. These are the people behind ANP Coalition, just as they are heavily involved in the Burzynski Patient Group. In fact, in July 2013, Ric Schiff was elected to the board of directors of the BRI, which makes his involvement in this effort a massive conflict of interest.
Predictably, Elisha Cohen, Liza Cozad, and Mackenzie Lowe are featured as the stories used to drive petitions to lawmakers and the FDA to allow compassionate use of ANPs. In addition, there are two new patients, of whom I haven’t heard before, Laura Nowosad, a 7 year old girl from Canada with a DIPG whose story is sadly familiar to anyone who covers Burzynski:
Her parents, Janusz and Mira, are an amazing couple whose lives got shattered in an instant. Laura is their only child and their whole world. They couldn’t believe that this is happening to their little girl; they were hopeful that the doctors made a wrong diagnosis and went for a second opinion. Unfortunately, this diagnosis was confirmed. Words cannot explain the feelings of hopelessness, frustration, and terror they felt when they had to be faced with the truth.
Janusz and Mira are not giving up hope! They have taken Laura to The Burzynski Clinic in Houston, Texas. This clinic has seen significant improvement in patients facing similar diagnosis as Laura, using alternative therapies not available in Canada. However, the treatment is very expensive. The initial visit costs $25,000 and each month after is $30,000.
On the same page is yet another desperate family being used by Burzynski’s minions as well, that of Isaac DeHerrera, a five year old boy whose tale is presumably so new that there isn’t yet a fundraising website that I could find or a petition to let Burzynski treat Isaac with ANPs on a compassionate use protocol. I’m sure there will be more families added as soon as Burzynski and his minions can find them. Clearly Ric and Laura Schiff and Steve and Mary Jo Siegel believe that they can duplicate the success Burzynski patients had in the 1990s, which was the last time Burzynski was in a comparable amount of trouble, with demonstrations featuring patients chanting, “FDA go away! Let me live another day!” and the intense political pressure brought to bear by a compliant Senator or Representative, the way they persuaded Joe Barton to drag then-FDA director David Kessler in front of his committee four times over two years to explain why the FDA was “harassing” Burzynski. Only this time, they have the Internet, which was only in its infancy as an organizing tool back in 1995, which allows them to produce a “Meet the Miracles” section, which, presumably, will be full of glowing testimonials of Burzynski Patient Group patients. So far, there is only Jessica Ressel, who was featured in the first Burzynski movie and whose testimonial is not convincing, as I described in detail in my review. No doubt she believes Burzynski saved her, but it is almost certainly the case that he did not, which is the only reason I can forgive her regurgitating Burzynski Clinic talking points.
His experience with ANP extends more than 18 years back when he represented the Burzynski Patient Group in 1995 and 1996, organizing numerous patient demonstrations and a Congressional Hearing on February 29, 1996 before the U.S. House of Representatives Energy & Commerce Subcommittee on Oversight & Investigations. These efforts helped Burzynski patients obtain access to ANP through Phase II clinical studies.
This isn’t cheap. Unless Martinez is serving pro bono, his hourly rates are $250 to $400. I have no reason to doubt the claim that he worked on organizing the Congressional Hearing in 1996 at which Burzynski patients vented at the FDA, but I wonder. I’ve read both Richard Jaffe‘s Galileo’s Lawyer: Courtroom Battles in Alternative Health, Complementary Medicine and Experimental Treatments and Thomas D. Elias’ The Burzynski Breakthrough: The Most Promising Cancer Treatment and the Government’s Campaign to Squelch It. Both books describe the Congressional hearings in which Burzynski patients testified from a very pro-Burzynski standpoint. I don’t recall seeing Mr. Martinez’s name being mentioned even once, and a quick flip through the indices and relevant sections of these books did not change that assessment for me. If Martinez were so important to the 1996 hearings, one would think that Jaffe and/or Elias would mention him and at least briefly describe his role in their books. They didn’t, as far as I can tell.
So what does the ANP Coalition want to accomplish? Its list of demands is long and some are completely unrealistic. For example, on its page where it tells people how they can help, it asks people to write to Wikipedia to:
…demand removal of the “Burzynski Clinic” webpage, since it has been high jacked by a paid group who identify themselves as “The Skeptics”, and is no longer open for public contribution. The Wikipedia page on “Burzynski Clinic” is filled with untrue statements, statements taken entirely out of context, cherry-picked information, sources that do not qualify as sources under Wikipedia rules, fake sources—you name it.
The Wikipedia team has already noticed the ANP Coalition’s attempts to astroturf its article on the Burzynski Clinic.
Others, however, are not unachievable. Certainly organizing petitions and getting people to write to their lawmakers are achievable aims, and that’s what concerns me: How do we respond? In the absence of sound scientific information showing that ANPs almost certainly don’t work and are very toxic, Burzynski’s claims notwithstanding, legislators and politicians are going to go with the sympathetic story; i.e., the stories told by Burzynski supporters of children with deadly brain tumors who will die soon if they aren’t allowed to have ANP therapy. That’s why 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 for him. Even in the case that a legislator understands the lack of evidence, he might well go with a “What’s the harm?” attitude, not appreciating that the harm can be appreciable given how toxic ANPs are, not to mention the financial harm done to the family raising tens or hundreds of thousands of dollars for an ineffective treatment. That’s why information to show why, as much as we sympathize with the plight of these patients and their families, legislators should not overrule the FDA’s decision regarding antineoplastons. Indeed, the real investigation should be into why the FDA has allowed Burzynski to get away with what he’s gotten away with all these years.
I also appeal to you, our readers, for help and ideas. Visit Bob Blaskiewicz’s appeal and take action. In the meantime, let’s hear ideas for how to counter this latest initiative.