Stanislaw Burzynski: Kind-hearted strangers and a failure of medical journalism

About two and a half weeks ago, I was disappointed to learn that Dr. Stanislaw Burzynski had somehow managed to delay justice again. At the time, I didn’t know what had happened other than that his hearing before the Texas Medical Board, which had been scheduled to begin on April 11 and to which I had been greatly looking forward, given that Dr. Burzynski could well have lost his Texas medical license if the hearing had gone against him. Fortunately, in the comments, readers informed me that this was nothing unusual, a continuance was issued due to legal maneuvering on both sides. Contrary to the claims posted by Eric Merola, the major charges against Burzynski still stand. We’re just going to have to wait longer than we had hoped. I suppose this shouldn’t have surprised me. After all, Burzynski’s hearing had originally been scheduled for January, and then it got delayed to April. Having it delayed a few more months is annoying, but the wheels of justice grind slowly.

Unfortunately, while those wheels are grinding slowly, Burzynski is still treating patients with advanced cancer with his antineoplastons, chemotherapy, “personalized, gene-targeted cancer therapy,” and sodium phenylbutyrate. As I’ve explained in excruciating detail in the preceding links, antineoplastons are not any sort of “miracle cure” for cancer, and the way he does “personalized, gene-targeted cancer therapy” can best be described as “making it up as he goes along” (I don’t mean that in a good way). Indeed, it’s not for nothing that I refer to Burzynski’s fumbling with genomic tests as being the equivalent of “personalized cancer therapy for dummies.” Yes, Dr. Burzynski’s cult of personality is – well — cultish to the point that it lures desperate patients to pay huge sums of money for his “clinical trials” that seemingly never end and for which he doesn’t report results.

Same as it ever was, unfortunately.

Actually, it’s the same as it ever was, except, it would seem, more so. Over the last few days, my Google Alert for Burzynski has been popping up examples of patients like Billie Bainbridge or Jessie Bessant, whose families have been holding fundraisers to try to pay for the exorbitant fees charged by the Burzynski Clinic.

For example, just two days ago, I saw this story about Shana Pulkinen:

Children happily ran around the room and family members mingled at American Legion Post 6 during a spaghetti dinner to support Shana Pulkinen’s fight against a rare type of cancer.

Pulkinen, 30, a resident of North Berwick, Maine, has been diagnosed with Stage 4 metastatic liver cancer and is hoping to raise $50,000 for medical treatment at The Burzynski Clinic in Houston, Texas.

“This is unbelievable. It’s so humbling. It has changed my life knowing so many people care,” Pulkinen said.

Explaining that her type of cancer is difficult to treat and having survived pancreatic cancer in May 2010, she is unable to have further operations and explained that having chemotherapy done to any part of her body would kill her before it treated her.

Pulkinen said that by attending the clinic, which specializes in advanced cancer treatment, she will be able to have peptides from a healthy person pumped into her body, serving as antibodies to help combat the disease as “tumor blockers.”

Stories like this sadden me immensely. My evaluation of Burzynski’s methods and his unconvincing evidence that his therapies work. I’ve called this “harnessing the generosity of strangers to pay for woo,” and that’s just what this is. Her we have all these kind people trying to raise money for a woman with incurable metastatic liver cancer. In actuality, reading the description of her disease in the news story and on Pulkinen’s Give Forward page, her story sounds an awful lot like Steve Jobs in that she had a pancreatic tumor resected, states that she is now receiving “hormone injections” to keep her symptoms at bay (which implies to me that she had a pancreatic neuroendocrine tumor), and now has liver metastases. It’s a horribly sad story, such a young woman facing a terminal illness, made all the more sad by the family’s efforts to raise money for a useless treatment that will not help her daughter.

A couple of days before Shana’s story, I saw this story about Jessica Marie Hahn. Hahn has been diagnosed with stage IV non small cell lung cancer, and, even worse, her health insurance will be running out in mid-May and will not be renewed. (Isn’t our health care system lovely, canceling a woman’s insurance because she developed cancer?) Unfortunately, in her understandable desperation, Hahn is making a choice that makes things even worse:

Jessica will be undergoing treatment at the Burzynski Clinic in Houston, Texas. The Burzynski clinic does not take insurance outright, and Jessica will have to fight for reimbursement from the insurance company. More often than not the treatment is not covered through insurance. The treatment, cost of stay, flights and expenses are very high, but they feel that it is the best option for Jessica’s health, well being and future. Every aspect of their lives has been totally changed due to this most current hardship: their health, their business, and therefore their income and finances, their family planning, their living situation and their day to day living. But they know that one thing will always remain constant: the support and love from their families, friends and God.

I can understand how desperation to save her life or the life of a loved one might lead a person to be seduced by the blandishments of someone like Burzynski. I also understand how, from Hahn’s position, it might seem that things couldn’t possibly get worse. However, they can. Exhausting one’s life savings for a treatment that almost certainly can’t help her and isn’t even likely to palliate her is even worse than exhausting one’s life savings for a few more months of life. Meanwhile, Dr. Burzynski continues to enrich himself based on the desperation of patients like Hahn.

And the stories continue. For instance, meet Kelli Richmond. She was diagnosed with stage III ovarian cancer, was treated, and saw her cancer recur as stage IV. Now she’s trying to raise $50,000 to to to the Burzynski Clinic.

finally, I saw perhaps the saddest story of this current crop, the story of Amy Jones, a cheerleading coach from Connecticut. Jones is incredibly unfortunate. Unlike the previous three patients, this story is not about fundraisers or trying to come up with the money to pay Dr. Burzynski. Indeed, that barely even mentioned:

Treatment has prevented Jones from being there on a daily basis, but members of the East Celebrity Elite have stepped up to help. Posters, wristbands and T-shirts for her charity, the “I Love You and Mean It Fund,” are available. Team members also have taken on leadership roles in Jones’ absence.

A quick search for this charity located it quickly at the LYMI Fund, where several fundraisers are listed. So, although the focus of the article, unlike the others, was not on the fundraising to send a cancer patient to Houston, nonetheless it is still an example of harnessing the generosity of kind-hearted strangers couched in the form of a pitch-perfect human interest story — that is, if you don’t know that Burzynski’s antineoplaston therapy is utterly useless, in which case the story is sad for more reasons than the ones intended by the journalist writing it.

Amy Jones is only 28 years old and has stage IV colorectal cancer. As the story starts, we meet Jones expressing her frustration at needing a wheelchair for her flight back to Connecticut from Houston after having received treatment at the Burzynski Clinic. What’s interesting is that it is pointed out that she was feeling that weak in the wake of having received the “nontoxic” antineoplaston therapy. At least, Burzynski and his supporters tout antineoplastons as being “nontoxic,” even though they are, in fact, anything but. What we learn is that Amy is battling terminal cancer but is so dedicated to her award-winning cheerleading squad that she’s been flying back and forth between Houston and Connecticut, receiving Dr. Burzynski’s antineoplastons and coaching her girls when she can.

Unfortunately, the story is completely one-sided with respect to Dr. Burzynski. There isn’t even a single skeptical voice. I realize that evaluating the efficacy of Burzynski’s antineoplaston therapy was not the purpose of the story; human interest was. But, come on! This story is journalistic malpractice of the highest order. In essence, Michael Rondon writes a story that tugs at the heartstrings (certainly it tugged at mine) but in doing so ignores all the unsavory aspects of the Burzynski Clinic, including how it unethically charges patients huge sums of money to participate in Stanislaw Burzynski’s “clinical trials”; how Burzynski is being prosecuted by the Texas Medical Board for his activities or is being sued by a former patient with terminal cancer for using his clinics and pharmacy to bilk her out of $100,000; and, even more importantly, how there is no compelling evidence that Dr. Burzynski’s therapies do any better than conventional therapy or that they do any good at all.

Come to think of it, the same is true of all three stories I’ve mentioned here. (I’m excluding Kelli Richmond because the only web page I cited about her was her fundraising page; the others all had news stories about either their fundraising efforts or their brave battle against cancer using Burzynski’s “cutting edge” therapies.) In each story, Burzynski’s image is burnished almost as well as if it were done by his own personal P.R. firm — better, even, given that Burzynski’s own personal P.R. efforts have veered into utter incompetence of late. (Marc Stephens, anyone?)

I have nothing but sympathy for the four people I’ve just discussed. They’re all young. Too young. They’ve all been diagnosed with terminal cancer of one form or another and, although they probably have variable prognoses, none of them are expected to survive their disease. Science-based medicine has nothing curative to offer them, only palliative care. Although palliative care is very, very important in terms of maintaining quality of life during terminal illness, no one embraces it because people don’t want to be palliated; they want to live. They won’t accept palliation until they realize that they can’t live.

That’s what bothers me the most about Burzynski. He encounters patients at their most vulnerable and promises them what they really want while denying them what they need, in the process draining their bank accounts and making beggars out of them.