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

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

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

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

I was sadly, enormously mistaken.

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

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

It was heartbreaking.

We learn that Cristiano went through a brutal treatment regimen:

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

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

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

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

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

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

WE ARE BEGIN FOR HELP!!!

PLEASE EVERYONE!!!

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

HELP US MAKE CRISTIANO SMILE AGAIN !!!

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

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

Looking at that child and his mother who loves him, only the most cold-hearted person would fail to be moved and saddened. However, I was also angered. Burzynski actually said that this child would be a “good candidate” for ANP therapy and convinced Sitkowska that the treatment could actually save her sone’s life? Again, as was the case in so many stories five years ago, it’s pointed out that the NHS won’t pay for ANP treatment without pointing out the reason why: The NHS quite correctly has concluded that ANP therapy is ineffective. It’s useful to contrast this NHS policy with its willingness to fly the parents and Cristiano to Oklahoma for proton beam therapy, a therapy that is effective but arguably only marginally more effective than standard radiation therapy. If the NHS is willing to fly a patient to Oklahoma for proton beam therapy but not willing to pay for ANPs, that should tell you something.

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

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

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

Just this morning, the paper has published an article entitled, Mum responds to claims American cancer clinic is selling false hope: ‘I believe I am doing the right thing.’ It’s the saddest article of all, because it shows just how far down the rabbit hole of false hope that Burzynski has led this unfortunate family:

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

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

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

I fear that this family’s decision that the treatment is “worth a try” is based on anecdotes, propaganda, and pseudoscience. I realize that it’s hard to accept that Cristiano is terminally ill and there’s nothing that medical science can do other than to try to palliate his symptoms. I can’t imagine having to accept that news or watch a child decline and die. The family is in a horrible situation, and Cristiano is suffering, but Burzynski is not the answer.

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

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

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

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

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

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

At the time, I referred to this as him basically slithering away from justice yet again. The tragic case of Cristiano Sousa shows me that I was correct. Burzynski is back in business attracting families of dying children with false hope and inducing them to pay hundreds of thousands of dollars for his ANP treatment, which has never been shown to be effective for brain cancers or any cancer and is known not to be safe. It’s as though it were 2012 again. It’s as though he never left.

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

Basically, the regulatory and legal system, which is supposed to protect patients from predators like Burzynski, has failed at every level. The Texas Medical Board is just the latest example.