More patients whose deaths Burzynski has presided over…

December 5, 2011

It’s not over, people. A few days ago, I started posting the stories of patients who had been to see Stanislaw Burzynski and appeared in the news. In the previous post, almost all of them, with a single exception, a girl whose cancer had already been in remission twice (odd, I’m given to understand), died. Orac has recently looked at three cases that have been presented as evidence of Burzynski’s treatment, and he raises some profound, disturbing questions. I omit these cases.

As I suspected, there have been many more. They seem to appear in the news when some family makes a desperate appeal for money to go to  Burzynski’s clinic for his unproven treatments:

  • On December 1, 2011, the UK’s Watford Observer reports that a 4-year old girl from Oxley Hall is fighting an “ependymoma brain tumour”:

“But at The Burzynski Clinic in Houston, Texas, a pioneering treatment could prove the answer to [the family’s] prayers. The family had to raise £20,000 for preliminary tests, which established that [the girl] is suitable for treatment, and further cash for ongoing medication.” [emphasis added].

The same paper reported on 18 July that the family successfully raised £100,000 for the treatment.

  • In Australia, the Ballarat Courier reported on 29 Nov of this year that a group is raising money for Braydon Stefan’s trip to the Burzynski clinic by auctioning off tradesmen’s services. They have already raised $60,000, for a Dr. Charles Teo (could an Aussie look into this guy?) who thought that Burzynski might be a good match for Braydon, at least according to the Courier on the 23rd. [Update: I’m distressed to report that Braydon died in June of 2012]
  • On 23 November 2011, the Cambridge Evening News reported that the family of Supatra Adler, a 6-year old diagnosed with a “Diffuse Intrinsic Pontine Glioma brain stem tumour.” They spent 3 weeks at the Houston clinic, and they had doubts:

“We started doubting ourselves with this course of action as it required using up all our savings and travelling to Houston, Texas, for an extended period of time. You see the money is not really the issue other than we were worried it was a scam like so many other alternative treatments out there and if we expended all our savings on this treatment and it was a scam then we would have nothing left should a legitimate treatment come available. During this period it was a constant high and low moment for us as we flip-flopped on whether or not we should go. In the end we both agreed that since the mainstream medical community was offering us no hope for Supatra that we should try everything and anything.” But in the end the cost was immense: “She added the treatment had almost exhausted their savings, costing more than £89,000 so far with yearly costs of up to £63,000.” [Update: 8/10/12: I am very sorry to report that Supatra died in June of this year.]

  • On 29 June 2011 of this year, the Las Vegas Journal-Review reported that teenager Kassidy Merritt was going to see Burzynski for treatment of a brain stem ganglioglioma. Her father said that it was costing them $30,000 to start treatment, that the Ronald McDonald House would not put them up in Houston because of Burzynski, and that their doctors called Burzynski a quack. I’m happy to report that she’s still fighting, though I don’t know what her status is as far as the Burzynski clinic is concerned. We’re certainly pulling for her!
  • On 17 February 2011, the Contra Costa Times reported that a fundraiser was being held for 4-year old Noah Stout, who had an inoperable brain tumor. Burzynski’s treatment was at the time projected to cost $135,000, toward which mensch Carlos Santanta donated a guitar for auction. He is still fighting too, and that’s a damn cute kid!
  •  On 27 January 2011, the Grand Haven Tribune reported that Christine Tooker was raising money for treatment. I have only seen her appear in one other article, in October about end-of-life care, and she sounds extremely practical about what is happening to her. I wish her the best.
  • Randy Goss, whose story I encountered while looking through the “cancer cures” section of Yahoo’s message boards, according to the person who posted: “[Goss’] treatment was with Dr. Burzynski’s antineoplastons for kidney cancer […] After being cancer free the malignancy returned in 2000 and he was successfully treated again by Dr. Burzynski” At the time of the post, Mr. Goss was seeking additional media coverage of his cure. By his own account, he was feeling better and gaining weight after his return from Burzynski’s clinic in 2000, and he gave his contact information in Dunkirk, New York information in a post, seeking to spread the message of his cure. He died in 2001 of cancer.
  • On 14 December 2009, the Patriot-Ledger reported on Natalie Hull who was diagnosed with a diffuse intrinsic pontine glioma. It’s not certain that she ever saw Burzynski, however. The family was praying at the time that she would be accepted at his clinic, and they had reached financial ruin (had they applied with the standard gigantic fee that Burzynski apparently require?), but the paper reported that Natialie had died a few days later.
  • On July 30, 2009, the Salt Lake Tribune reported that the parents of Maryn Cella were optimistic about raising $100,000 to get their daughter treatment. There was a $20,000 down payment. Maryn succumbed to her cancer. The blog that her mother set up recording the experiences is an instructive, genuinely affecting read about the roller-coaster that treatment can be. I will leave it to others to examine the family’s experience with Burzynski.
  • On 11 May 2008, the East Valley Tribune reported that 2-1/2 year old Briannah Olsen had undergone treatment at the Burzynski clinic. Again we see a story of a shrinking tumor, but which ends with tragedy.
  • On 3 April 2008, The Spokesman Review reported that Greg Hiatt was seeing Burzynski for treatment. “

“Greg is doing really well,” his wife said with conviction. “He hasn’t needed to have his chest drained since he began treatment and hasn’t had any side effects.” She credits the positive attitude of those at the Burzynski Clinic and their faith in God for the fact her husband is still functioning when he was given such a negative prognosis. “Our faith has kept us strong,” she said. In the meantime, Hiatt’s medical costs are adding up – his medications alone total more than $35,000 each month. The family believes in the course they have chosen, but know their medical insurance won’t stretch to cover many of the expenses they are facing.”

I can find no outcome, and hope that Greg is well.
  • On 18 August 2006, the Lowell Sun reported that 6-year old Justin Bissett had been enrolled with the Burzynski Institute, but it was not without significant expenses, for which his community kicked in:
“The Bissett family has found some hope in a clinical trial for an experimental molecular treatment that Justin has been enrolled in at the Houston-based Burzynski Research Institute.

Bissett said there has been a marked improvement in Justin since. But the treatment, as well as Justin’s medications and specialized nutritionist, constitute a significant financial burden on the family, Bissett said. The latest in a series of fundraisers to help offset the medical costs will be held tomorrow in Tewksbury, courtesy of a group of Bissett family members and friends.”

Justin has since died.
  • Lisa Johnson of Plymoth told the Star-Tribune on 15 May 2006 that: “[W]hen a doctor at the Mayo Clinic says there is no cure, why would I question that? But I take all of these recent occurrences as sign that God is saying, `Lisa, you’re going to be OK. Hold on to hope.’ And I feel this treatment with Dr. Burzynski is my only hope.” She died in 2008.
  • The Chicago Daily Herald reported on 6 July 2005 that Mateo Casimiro Rotger was undergoing the Burzynski treatment through the clinic: “Today, Mateo is part of a Federal Drug Administration study at the Burzynski Clinic in Houston, Tex., which specializes in cancer treatment. Though it is costly – Rotger estimates $8,000 per month for medical costs and equipment – members of St. Isidore Church in Bloomingdale are offering their grown-up piggy banks. The church has set up a fund to help offset Mateo’s medical costs, many of which are not covered by insurance.” Mateo passed away in September. The memorial website says of Burzynski’s treatments: “We hope that this is the treatment that will answer our prayers. However, as with all things worthwhile, there comes a price and a rather expensive one. The cost of the doctors’ fees, treatments and medicine comes to about $150,000 for only one year’s worth of treatment. “
  • On September 22, 2004, the State Journal-Register (Springfield, IL) reported that a benefit dinner for Kathy Robertson was being held to “help defray the cost of experimental cancer treatment for Robertson at the Burzynski Clinic in Houston.” I am unable to find her outcome online, and hope it turned out well.
  • An announcement in the 14 Aug 2004 Arkon Beacon Journal announced the following golf benefit:

Organizers of the “J.E.M. Golf Outing” — scheduled for Aug. 29 at Raccoon Hills Golf Club in Kent — are offering up lots of prayers for a rain-free day, but, more importantly, for remission for the three people designated as beneficiaries of the outing:

+ Eunice Huffman-Nichols, a 41-year-old Streetsboro mother of two who was diagnosed with a brain tumor seven years ago. (Eunice died in July of 2005.) [Update 9/29/13: I received a message from Eunice’s brother, who asked I relay the following information: “My sister Eunice, did raise funds for the treatment. She had a 64% reduction of her tumor after 6 months on the ANP treatment, continued for a few more months on the treatment until there was not growth or reduction for a number of months. She was able to walk again, regain her vision and even started driving again! Ended the treatment and stayed stable until her death. She was off the treatment completely for 4+ months with no changes in the tumor at all and then had an emergency situation unrelated to the tumor and passed away while in the ER.”]

+ Mary Vukich, an 11-year-old from Orwell in Ashtabula County with strong ties to the Akron-area community. She was diagnosed at the Cleveland Clinic in October 1999 with six inoperable brain tumors. (I believe that Mary is alive and a member of the Burzynski Patient Group.)

Like the other two, Mary received alternative medical treatment (not covered by insurance) at the Burzynski Clinic in Houston. Cost to golf is $100 per player or $400 per foursome.

  • On 10 January 2004, Deseret Morning News reported a fundraiser for Megan Thompson. The projected goal was $180,000. I found no outcome on the web.
  • Evan Shaw reported a cure in the 22 July 2003 Calgary Herald. It cost $190,000. I can find no follow up and hope for the best. Searching for corroboration of this story, I came across the story of Albert Loranger who was looking to raise $11,000 a month. I can find no outcome.
  • On 27 April 2003 the Sunday News reported that Linda Biemiller was raising money to visit the Burzynski Clinic:
“In January of this year the couple traveled to Burzynski Clinic in Houston, Texas, to meet with Dr. Stanislaw Burzynski, a physician who treats patients with brain tumors using antineoplaston therapy.

“We spent two weeks at the clinic receiving training on how to administer the treatment,” said John. He explained that a portable pump administers two different medicines every four hours for almost two hours, 24 hours a day. The initial treatment and trip to Houston cost more than $25,000, with ongoing costs of $7,200 a month for an average of six to eight months. If the outcome is good, Linda would be put on a pill form of the treatment at a cost of $2,000 a month.”

Linda died in June 2005.

It’s hard to say what happened in many of these cases. The recent ones are still unfolding, of course. The older ones, well, they stop asking for money. You can’t read much into that. A few of the people reported that they were getting better or that the tumor had stopped growing, only to die shortly thereafter.  (I am starting to feel that when Burzynski reports that the tumor is shrinking, one should get a second opinion.)
Cures are few and far between, and you can’t use them to establish causality, especially as Burzynski has treated patients with mixed modalities. If more of these patients had lived, however, I suspect that Burzynski would use their testimony at every possible opportunity, since he does not have the clinical trials that, after 30 years of “tests”, would show that his therapy works. His public record is a body count, and the FDA needs to step in and stop this horrible, ongoing pillaging of grief.
RJB
Please donate to St. Jude’s, who don’t turn people away, even if they can’t pay. Unlike Burzynski, who was once found guilty of fraud.

This Week in Conspiracy (4 December 2011)

December 4, 2011

Howdy. We may be blasting Burzynski mercilessly, but we’re still constantly collecting stories for the week in conspiracy. If you come across any good ones, please let me know!

Conspiracy Theories of the Week

“Nothing in this section shall be construed to affect existing law or authorities, relating to the detention of United States citizens, lawful resident aliens of the United States or any other person who is captured or arrested in the United States.”

That’s all you’re going to get out of me this week. Now if you’ll excuse me, I have some important Mystery Science Theater 3000s to watch.

RJB


The Observer still doesn’t understand Burzynski

December 3, 2011

The Observer, the epicenter of l’affaire Burzynski, has responded to the deluge of criticism from the medical, scientific and skeptical communities about its coverage of the cancer quack, Stanislaw Burzynski, who continues to pump unproven urine-derived treatments into terminal cancer patients and charges them insane fees up front for the privilege. Entire communities throw untold sums of money at the slimmest (nonexistent, really) hope that these patients will recover at the Burzynski Clinic, and the Observer finds this uplifting.

Horse shit. And shame on The Observer.

The reader’s editor column today, which I believe is essentially an ombudsman’s column, does nothing to serve the readers who might damn well end up in the clutches of the monster from Texas. The title of the article is simply beyond the pale:

The readers’ editor on… kind hearts and a cruel illness: Is it so surprising where desperate parents will turn in the search for a cure for their terminally ill child?

No. Not at all. They are vulnerable and desperate, which is why it is our collective responsibility to protect them. What is surprising is that your editor is unwilling to say, “Boy, we really messed up by giving someone a platform to promote what will inevitably be massive fraud of the most callous and depraved kind.” But look how the Observer continues to frame the issue:

Yet what was intended as a gripping, human-interest story quickly drew a sustained attack on the paper for apparently offering unquestioning support for a highly controversial cancer treatment, known at antineoplaston therapy.

First off, it’s not controversial therapy at all. It’s a failed therapy. 30+ years and no credible science to back it up? FAILED.

The Observer, unbelievably, is trying to twist this story into some sort of attack on the family of Billie Bainbridge, the little girl whose sickness prompted the original article. They actually close the article with the line: “But some participants in the debate have combined aggression, sanctimony and a disregard for the facts in a way which has predictably caused much distress to the Bainbridge family.”

They point out that the Rhys Morgan, a 17-year old who was actually threatened by the Burzynski’s hired toughs (they actually sent him a google map image of the kid’s house, which translates into, “We know where you live”), did not talk to the Bainbridges before he asserted that they “looked on the Internet.” (The Observer fails to demonstrate that this was factually incorrect. Just saying.)

So what? That is the least important part of Rhys’s original post. The fact remains that a 30-year fraud is claiming another little victim. Who gives a tiny nutty crap about how the parents heard about the scam artist?

Hey, do you want to see some bad writing? Notice how the paper goes from indignation that the Internet somehow failed to…recognize that Billie’s family was looking at anecdotal evidence(?), to a defense of the paper:

“Billie’s parents know it is unproven, but there are other families in this country who were told by their hospital that their condition was terminal and nothing could be done for them, but were then treated at the clinic and survived. Knowing this, Billie’s parents felt they couldn’t sit back and do nothing if there was a small chance this treatment would save her life.”

And this is the point that is being lost in the vitriol that is flying around the internet. Undoubtedly, the Observer was wrong not to have included criticism of the treatment. A simple check with Cancer Research UK would have revealed the depth of concern about it and, no question, that concern should have been in the article, but because it was absent doesn’t mean that the paper was promoting the treatment, as some have suggested (“pimping” it, as one science writer so crudely tweeted).

Uncritically giving a cancer quack uncritical press? How could we possibly have mistaken that for promotion? We should have just called it as it was: a shoddy, pathetic, and irresponsible attempt at journalism.

The Internet apologizes for not making this clearer.

Now do you f*cking job and protect Billie, her family, and your readers from this immense fraud.

RJB

Please consider donating to St. Jude’s Children’s Hospital. They turn nobody away, even if they can’t pay. Unlike Burzynski.


Let the Year of Achtung Baby Begin!

December 1, 2011

20 years ago in October, U2 released Achtung Baby, a generally excellent album, as good in my opinion as anything that came out in the ’90s. I was not a dedicated U2 fan before it came out. I was afterward. It is no exaggeration to say I have listened to the album, or the numerous derivative remixes, single versions and B-sides on a weekly basis since it was released. Think about that for a second. By any definition, it’s been a bit of an obsession. In that sense, I can sort sympathize with artists who are obsessed with a single subject/medium/theme throughout their professional career. Except Christo. What the hell is that about?

It’s hard to convey my obsession with the album to someone who hasn’t had to live with me. I have listened to it hundreds of times, and I still notice new things (I think), every time I hear it. Dollar for dollar, the CD was probably the best 15 dollars I ever spent. I do get burned out from time to time, of course, and go on hiatus, but when I come back to it, I hear it new.

Achtung Baby was also the album that introduced me to what a guitar could do. The first guitarist I ever noticed, it should be said, was the Edge. I remember seeing the video for “I Still Have Found What I’m Looking For” on MTV, which used to have music videos on it. In it, the band’s walking around Las Vegas, and Bono’s kissing girls while Edge is playing a beaten-up acoustic and not giving a shit. And I thought that was totally f*cking cool.

AB was unlike anything that I was familiar with.  The band had changed sounds before, from their early post-punk stuff, to the experimental soundscapes of The Unforgettable Fire, which led directly to the fuller and more mature sound of The Joshua Tree, and Rattle and Hum, which sort of sounds like an Irish guy doing an American accent. In the lore of the band, the group was looking to reinvent itself. Half the band wanted to stick with a Joshua Tree-style sound that had turned them into a stadium-filling headline act, while Edge was getting into Nine Inch Nails and dance music. At the same time, romantic relationships were breaking up. In search of inspiration, the band went to record in Berlin, a city that was re-imagining itself after the collapse of the Wall. While visual aesthetic of the album and subsequent ZooTV/Zooropa/Zoomerang tour was defined by the band’s winter in Berlin (especially from the proliferation of cheap little East German Trabants), the recording sessions was marked by creative discord. So they went back to Dublin, where things came together. As I understand the story, the band was working on another song, possibly “So Cruel,” and sort of stumbled onto “One.” (I hear that audio of this session is available, but I have yet to hear it. Soon.) The band would stay together! Huzzah! (Or something.)

Achtung Baby was an effect-heavy album from the beginning of the first track, “Zoo Station,” when Larry pushes his bass-drum through a distortion effect. Bono stopped screaming and started singing falsetto using effects on multiple vocal tracks. Adam Clayton was also there. I’d also say it is a project driven by highly processed guitars. Since The Unforgettable Fire, Edge had been known for layered jangling delays, chorus effects, and his “shimmer,” in which the guitar signal is split, and one line goes through an octave effect repeatedly, so that the effect is of the original tone followed shortly later by a swelling chorus (see the video):

As you might imagine, when you have a slightly delayed duplicate signal (or many), suddenly a lot of sonic options open up for you, because each line can be run through its own effects chain. And it is this sonic space that the Edge filled in Achtung Baby. On board, an arsenal of guitars, delay effects and a pair of Korg A3s. The Korg A3 is a sort of dinosaur now, a pioneer of digital rack-mounted multieffects chains coming online, but when you plug one in, you feel the roots of several sounds on the album. Each A3 allows you to run a signal through up to 6 different effects at a time. You can program the machine to run the effects in the order you want, and each effect can in turn be adjusted to your liking. It’s a pretty complex machine with a lot of flexibility.

My obsession with the album’s sound has driven a lot of my decisions about my guitars, my equipment, and what I do with them. In a subsequent post, I will show off what the machine can do (which happens to include hiding what I can’t).

RJB