Over the weekend, I started to get the feeling that I’ve never left the time period from around 2012-2014. I’ll show you what I mean by quoting from a news story I saw in—where else?—the Daily Mail, with a suitably overwrought Mail-esque headline, Devastated mother has race against time to raise £150,000 to take her 11-year-old daughter with cancer to America for potentially life-saving treatment:
A devastated mother is in a desperate race against time to raise £150,000 to fund potentially life-saving cancer treatment for her daughter.
Demi Knight, 11, from Louth in Lincolnshire, was given months to live in February after scan results showed her brain tumour is spreading.
The youngster, who has a Medulloblastoma tumour growing in her brain and spine, was given the all clear two years ago after her first battle with the disease.
But now her desperate mother Mel faces a race against time to get her to America for experimental treatment which could save her life.
She needs to raise £150,000 to pay for the crucial trip and has launched a fundraising and Facebook page pleading with the public for their support
Regular readers who’ve been around at least four or five years will likely immediately be able to guess what this “experimental treatment” is and where in American her Demi’s parents want to take her. It’s a depressing script that I’ve been writing about at least since 2012. Yes, Demi’s parents want to take her to The Burzynski Clinic:
‘Our latest scan results show that the tumour is going to be putting pressure on her movement and sensory functions soon,’ said Mel.
‘We need to get Demi out to the States now, before it’s too late.’
The NHS have said there is nothing more they can do to help Demi, but the specialist Burzynski Clinic in Texas offers customised treatment at £35,000 per session.
Unbelievably—no, strike that, all too believably—Stanislaw Burzynski is still in business. As it has so many times before, the Texas Medical Board, even after a long and involved investigation and nearly as lengthy legal proceedings, has failed to stop this quack, and it’s full steam ahead for Stanislaw Burzynski, whom I last wrote about a year ago when another family of another similarly unfortunate child with cancer was portrayed in a news story going to the Burzynski Clinic as their “last chance.” It’s as nothing has changed in all the time that I’ve been writing about the violations of science, medicine, and ethics routinely engaged in by Burzynski and his acolytes.
Consider: While writing this post, out of curiosity I did a search for my earliest mentions of Stanislaw Burzynski. My first mention of him was ten years ago, but it was a throwaway mention. I didn’t really discuss him in any great depth, but rather used him as an example of alternative cancer cures that an alt-med advocate was lamenting as having never been well-tested. Then, in 2010, I wrote about a case that will have echoes of Demi Knight’s case in a post I called Harnessing the generosity of kind-hearted strangers to pay for woo. In this case, the patient was not a child, but an adult named Rene Louis, who was seeking out Burzynski for her metastatic medullary thyroid cancer. Depressingly, the date on my post is May 5, 2010, almost exactly eight years ago. Yet, here I am, writing about Burzynski preying on the vulnerable, giving false hope to the parents of a child with a deadly brain tumor.
It was more than a year later that I undertook a detailed examination of Stanislaw Burzynski’s antineoplastons. The reason was that a woo-friendly director named Eric Merola had released a propaganda film disguised as a documentary about Burzynski. At the time, I asked whether Burzynski was a pioneering cancer researcher or a quack. Rereading that post, I now think I was far too kind. Given what I know now based on the last six and a half years, my opinion is now firmly in the “quack” camp to describe Burzynski. But what are antineoplastons?
The detailed story can be found here, but the CliffsNotes version is that, back in the 1960s as a young medical student in Poland, Burzynski came up with a hypothesis that the body produces endogenous proteins or peptides that inhibit carcinogenesis and the growth of cancer. Of course, in 2018, we now know that there are such proteins (also that the biology is far more complex than Burzynski could ever have imagined), but in the 1960s this was a fairly novel concept. We also now know that what Burzynski discovered are not, in fact, anticancer peptides. Be that as it may, in the 1970s, having fled Poland and landed in Houston at the Baylor College of Medicine, he got the chance to test his hypothesis. By the mid-1970s he had published results claiming to have discovered peptides found at different concentrations in the blood and urine of cancer patients compared to normal patients. He fractionated blood and urine and isolated 39 fractions, of which some had anticancer activity. The two main fractions he dubbed AS-2.1 (also known as Astugenal or Fengenal) and A-10 (also known as Atengenal or Cengenal). As Saul Green and others have reported, AS-2.1 is the sodium salt of phenylacetic acid (PA), a potentially toxic chemical produced by normal metabolism and detoxified in the liver to phenylacetylglutamine (PAG). To boil ANP chemistry down to its essence, AS-2.1 is primarily a mixture of PA and PAG, and AS-10 is primarily PA. Of note, PA had been studied as a potential anticancer agent years before Burzynski discovered it and, although it has been studied intermittently for fifty years, has shown little promise against brain tumors.
In any event, in the late 1970s Burzynski thought his ANPs ready to test in humans, but he had trouble convincing the Baylor Institutional Review Board.IRBs tend to be rather harsh on the ethics of studying compounds that are not fully chemically characterized, and at the time Burzynski had not yet fully characterized his ANP fractions. It also didn’t help that Burzynski almost certainly didn’t have sufficient preclinical data to justify a clinical trial at the time. None of this deterred Burzynski. Brave Maverick doctor that he viewed (and views) himself, he shopped his trial around other hospitals. After he left Baylor, he began treating patients in his own clinic with ANPs, which at the time were isolated from copious quantities of urine. Eventually, Burzynski developed a process to synthesize them, but in those days he could quite rightly be called the pee doctor. Since then, Burzynski has managed to continue to keep treating patients, despite periodic attempts by the Texas Medical Board or the FDA to shut him down, demanding huge “management fees” on the order of what Demi Knight’s family is being charged. By 2012, he had branched out, still selling ANPs but also billing himself as offering “personalized gene-targeted cancer therapy,” which is more accurately characterized as “making it up as you go along,” although Burzynski goes to ridiculous extremes in describing himself as a medical genius doing gene-targeted therapy 20 years before anyone else. Basically, though, what Burzynski does is to use commercially available gene sequencing and testing (e.g., Caris) and then picking a witches’ brew of highly expensive targeted therapies, many of whom have never been tested together and some of which are highly toxic based on, again, making it up as he goes along, and requiring patients to buy the drugs from a pharmacy that he owned. Later, he eventually figured out that a legitimate drug for other indications, phenylbutyrate, is metabolized into PA and PAG (i.e., antineoplastons) and started using the drug as an “ANP prodrug” and “epigenetic therapy.”
The template of the story of Demi Knight is a template that I’ve seen and written about a depressingly large number times. The script is always the same, with minor variations. A patient is found to have an inoperable brain tumor or a different cancer that’s metastasized and is now incurable. The patient and/or the family search online, understandably desperate for other options. They then come across Stanislaw Burzynski’s ANPs (or his other dubious treatments), most commonly through the propagandistic documentary Burzynski The Movie: Cancer Is Serious Business and/or its sequel Burzynski: Cancer Is A Serious Business, Part 2. (Truly, Eric Merola has a lot to answer for, his work having lured cancer patients to death and bankruptcy.) Next, the fundraising appeals ensue, through Facebook, GoFundMe, and other sites. These fundraising appeals reach the press, and someone, somewhere, will publish a credulous “human interest story” on the cancer patient’s and family’s “brave desperate campaign” to save their loved one’s life. The British tabloid press and the Daily Mail in particular, have much to answer for in this respect, and, as the example of Demi Knight shows, the Daily Mail has learned nothing—or, far more likely, its editors just don’t care. The reason is that seemingly a disproportionate number of these sad stories and fundraising campaigns appear to come from the UK.
I was most active at analyzing these sorts of sad patient stories between 2012 and 2014, and the list of names of patients with cancer whom Burzynski has victimized and whom I’ve written about is a long and depressing one: Rene Louis, Shana Pulkinen, Jessica Marie Hahn, Kelli Richmond, Olivia Bianco, Billie Bainbridge, Rachael Mackey, Amelia Saunders (whose father actually wrote to me), Seán Ó’Laighin, Hannah Bradley, Laura Hymas, Sheila Herron, Christina Lanzoni (Fabio’s sister), Neil Fachon, Stephanie O’Halloran, Liza Cozad (wife of Sammy Hagar’s drummer David Lauser), and McKenzie Lowe. I’m sure I’ve probably missed a couple, but you get the idea, and, besides, Bob Blaskiewicz has chronicled many, many more stories of Burzynski’s preying on cancer patients. Through it all, I keep seeing horrible news stories about Burzynski, chock full of false balance.
As they say, every story needs a victim, a hero, and a villain. Burzynski’s stories always have all three. The patient, obviously, is the victim, and Burzynski, equally obviously, is the hero. In the case of patients from the UK, the villain is usually the NHS, which is portrayed as being close-minded and cheap, not wanting to spend money to send the patient to Houston for Burzynski’s treatments. Elsewhere, it’s the insurance companies, the medical profession, the hospital at which the patient was being treated, and, of course, always, always, always, the skeptics who dare to point out that the Great Man, the Emperor, has no clothes. We are routinely portrayed as not just wrong, but downright evil. Never mind that, contrary to Burzynski’s claims, his ANPS are toxic and have even resulted in a death of a child named Josia Cotto due to hypernatremia that led to a partial clinical hold on his clinical trials. Never mind that Burzynski’s “clinical trials” not infrequently land patients in the hospital, so much so that BBC Panorama reported that the staff at the pediatric ICU at nearby Texas Children’s Hospital dread receiving Burzynski patients.
Speaking of his clinical trials, I can’t do a post about Burzynski without noting a couple of other things. First, Burzynski’s clinical trials are a fraud. During legal proceedings against Burzynski for insurance fraud, a judge ruled that Burzynski could continue if his patients were all treated under the auspices of a clinical trial. So Burzynski cranked out 72 near-identical clinical trials and somehow got them approved by the FDA, thus shutting down the prosecution. Again, the details can be found here. Second, during the 1990s, Burzynski perfected a technique of weaponizing his patients against any attempt by the FDA or the Texas Medical Board to shut him down. It’s a technique he uses to this day.
This brings me back to Demi Knight. Her GoFundMe page describes her situation:
Demi was a perfectly happy, healthy and normal 9 year old little girl who, in December 2015, was suddenly diagnosed with a Classic Medullablastoma brain tumour.
She had full surgical removal, followed by radiotherapy and chemotherapy which finished in February 2017 and was having clear 3 monthly scans up until her most recent MRI scan this month (March 2018) which has shown that the tumour has returned in her spine and head. A further scan at 8 weeks later has shown the disease to be progressing.
As the standard treatment has failed, we’ve been told this isn’t going to get any better!
Since this news we have frantically been trying to find where promising treatment is available and have found the Burzynski Clinic in Houston Texas to offer us the best hope through using Antineoplaston Therapy, but, this is to come at a cost that on our own is impossible to pay for.
I’ve spoken to parents who have a child who was treated at this very clinic after being told their child’s brain cancer was also terminal and all hope was lost, this was back in 2008 and this child’s tumour is now resolved! And she is alive and well today
And based on other people’s personal experiences of visiting and being treated at this clinic, that’s why we’ve chosen it and are desperate to get Demi there.
We have been told that to get us going we need at least £35,000 but that costs will be ongoing and will end up costing upto around at least £150,000+ and this is to cover costs of everything that involves getting us out there including the treatment itself, flights, accommodation and additional tests, medication, follow ups etc.
We have the support of a fully qualified naturopath who is helping and guiding us with intergrated treatment. We have changed Demi’s diet dramatically and she is also having HBOT 5 days a week, our nearest centre is nearly an hour away.
This is a typical anecdote, so much so that I could easily have seen it and written about it in 2012. There’s the quackery, like hyperbaric oxygen, and the naturopath who’s involved. Then there’s the real big bucks needed to travel to Houston and be treated by Burzynski. It’s depressing to think how little has changed. Now, as then, my heart goes out to a family who’s suffering. Now, as then, rage rises in me as I contemplate how Burzynski is bilking this family out of hundreds of thousands of dollars (or pounds). No matter how many times the FDA temporarily shuts Burzynski down or the Texas Medical Board acts, somehow, again and again, Burzynski manages to slither away from justice to keep producing patients whose families desperately raise money for his quackery.
Now, Burzynski is preparing to go international:
CHIPSA Hospital is a quack clinic located in Playas Tijuana, Mexico, conveniently a mere three miles south of the US border. It bills itself as the “The Original Gerson Therapy Hospital” and “on the forefront of advanced integrative treatments and immunological therapies for over 38 years.” I’ve written about the quackery known as the Gerson Protocol many, many times. Here’s a hint: Coffee enemas. Yes, that’s a major part of the Gerson Protocol, along with drinking freshly squeezed juices 13 times a day from up to 20 lbs./day of fruit and vegetables, plus (of course!) lots of supplements.
The only thing about this revelation that surprises me is why Burzynski didn’t do it years ago or, in particular, why he didn’t do it 2-5 years ago, when he was in real danger of being shut down by the FDA and/or the Texas Medical Board, which might have even taken his medical license away, and when his temporary clinical hold on his clinical trials put extreme financial stress on his clinic, to the point where it was in danger of shutting down. That’s when I expected him to make a move to Mexico, where the regulatory environment is—shall we say?—much less onerous. Instead, he appears to be making that move now. I wonder why. Either way, Burzynski remains a cautionary tale of just how ineffectual the FDA and state medical boards can be when it comes to blatant quackery.