I carried this chap’s compelling film
eighteen months ago. Since then we have
seen little although I put it out of mind.
What we see today raises plenty of concern although this item tells one
sad story that ultimately sounds like too little too late if the protocol had
any merit at all.
I am seriously bothered by the
cash sub game under way and that is certainly not part of any research scheme I
have ever seen. This sounds seriously
like a deliberate attempt to attach trappings of legitimacy to drive the money.
This boy has to open his files to
fair minded third parties and make sure that it is tracked monthly. We have to get rid of the secrecy nonsense
that always surrounds these schemes. It
is not impossible to correct the data against the likely outcomes to determine
if real improvements are taking place although single events can be terribly misleading either way.
Besides, a patient with only days
to live is not even a candidate for anything except a last desperate roll of
the dice. I will only be impressed if he
gives the money back quickly. It was too late.
Stanislaw Burzynski fails to save another patient
Posted by Orac on November
2, 2012
I hate to end the week on a down note, but sometimes it’s necessary.
It’s been a while since I’ve written about Stanislaw Burzynski. I’m sure you
recall Burzynski. He’s a hero in the alternative medicine world, having been
cast as a martyr to The Man (i.e., the FDA and Big Pharma) because of his
selling of a dubious cancer cure that he calls antineoplastons. Although he’s
been selling his questionable cancer treatments for thirty years now, he’s recently
been in the news a lot lately thanks to a credulous paean to his activities in
the form of a movie that was released in 2010 called, unimaginatively enough, Burzynski: The Movie. As I pointed
out late last year in my
review of the movie, it is indeed a credulous paean that portrays Burzynski
as a Brave Maverick Doctor battling
The Man, all in order to bring The One True Cure for Cancer to the people. He
was also featured in Suzanne Somers’ encyclopedia of cancer quackery Knockout,
which could best be viewed as advertising for every major cancer quack you can
think of. Burzynski is also known for siccing
his attack poodle on skeptical bloggers who have the temerity to
criticize Burzynski for peddling an unproven cancer cure, charging his patients
for taking part in his clinical
trials, and his
“personalized medicine for dummies” approach to targeted therapy.
All the while, patient after desperate cancer patient is drawn like
flies to the proverbial lantern to Burzynski’s clinic in Houston, lured by the
promise of a cure for the incurable, willing to pay hundreds of thousands of
dollars to realize that promise, no matter how many fundraisers are
required or how many journalists throw
away basic journalistic skepticism to pen what are in essence
commercials for Burzynski’s clinic. Meanwhile, his patients drop like flies.
I realize that the vast majority of these patients would have died anyway. That
Burzynski failed to cure them is not the issue. The issue is how he sells a
useless therapy, how he represents his therapy as “natural” but uses lots of
chemotherapy anyway, how he uses extremely expensive cocktails of targeted
therapies with unknown toxicities, and how he charges patients hundreds of
thousands of dollars for taking part in his clinical trials, which have yet to
validate his antineoplastons as efficacious and safe after 20 years of trying.
In other words, Burzynski charges huge sums of money for false hope.
And now another young cancer patient has paid the price. Let’s jump back in time a couple of months:
The Mackey family in Danvers
A Danvers native and graduate of Danvers High School, Class of 2002,
Rachael, was just beginning to create her life, graduating from Bryant College
and working as a model as she traveled the world and developed her own small
business, when she began to experience intense headaches.
Doctors trouble shooted the headaches treating Mackey for potential
migraines and even prescribing eye glasses to see if that would help, but the
headaches would not dissipate.
“It was like having a four-month headache,” Rachael said. “There was so
much pressure in my head.”
Her mother Kathy Mackey said that when Rachael was slated to travel to Indonesia
The news wasn’t good. Mackey had a 7 cm grade II oligoastrocytoma. In
2010 she underwent a craniotomy to remove the tumor. Unfortunately, as these
tumors are wont to do, her cancer recurred in December 2011. Mackey underwent a
second surgery in June, but apparently her surgeons were unable to resect the
tumor. Consequently, it was recommended that she undergo chemotherapy and
radiation, and it was estimated that there was only about a 3% chance that the
tumor would responde significantly to the regimen.
Now put yourself in Mackey’s place. You’re 28. You’re a beautiful young
woman. You’re faced with a horrific, almost certainly fatal diagnosis. Your
life is likely to be measured in months—possibly even weeks—rather than the
decades more 28-year-olds expect to live. No career. No marriage. No children.
No dreams realized. I get it, at least as much as anyone who hasn’t faced such
a diagnosis can get it. You want to live. You’re willing to do almost anything
to live. Heck, I’m well into my middle age now, and I would still want to live.
I’d probably want to live even if I were 80, although perhaps not as strongly
anymore, having had a good life.
Enter Burzynski and his antineoplastons:
During their research, they discovered an alternative cancer therapy in
Houston , Texas
After enduring two major brain surgeries and given the low success
rates and horrible side effects that radiation and chemotherapy would have,
Mackey wants to try the program at Burzynski Clinic.
“I like that they treat the cause and stimulation of your cancer — not
just the symptoms,” Mackey said who at the moment is asymptomatic. “Because
without treating the cause, the tumor will just continue to come back. Our goal
is to defeat the tumor and not have to worry about it for the rest of my life.”
The clinic has currently been approved for Phase III Clinical Trial for
Antineoplastons treatment and Mackey’s brain tumor met the criteria to be
accepted as a patient in the trial.
There’s that damned phase III clinical trial again! I would almost kill
to find out how that particular trial was ever approved. (That’s metaphorical,
people. I wouldn’t actually kill anyone, but leave it to a Burzynski fan to try
to quote mine me.) The reason, of course, is that Burzynski wields that phase
III trial like a club against his critics, with its implication that because
the FDA approved his trial there must be something to it. Personally, having
pored over Burzynski’s publications, I just don’t see it, which is why I’d love
to see the preliminary data and rationale upon which Burzynski got this trial
approved. I also can’t help but note that if you go to ClinicalTrials.gov and
look up Burzynski’s phase III trial, you’ll see that it was approved in
December 2010 but is still, nearly two years later, not recruiting any
patients. This is quite unusual. Most investigators can’t wait to accrue
patients to their clinical trials, and most institutional review boards (IRBs)
and clinical trial offices get very antsy if a trial is open for a year and
isn’t reaching its accrual targets, much less not accruing even one patient.
I’ve seen it many times at the two cancer centers where I’ve worked. I suppose
that’s the advantage of owning the “research institute” and the IRB. I’m sure
no one’s giving Burzynski any crap about not having opened his phase III trial
yet other than cranky skeptical bloggers like myself, and, with his money flow
continuing apace, Burzynski can afford to ignore us.
Be that as it may, I also hate how Burzynski claims to treat the cause
of cancer more than oncologists. Let’s just put it this way. In the unlikely
event that antineoplastons actually demonstrated significant antitumor
activity, they’d be chemotherapy, every bit as much as doxorubicin, taxotere,
or cyclophosphamide. To label them as somehow “natural” and “nontoxic” is
nonsense, a lie. It’s also about as unethical as one can imagine to do what
Burzynski does, which in this case was to charge Mackey $30,000 for her initial
treatment and then $7,000 a month after that, with an estimated total cost of
$100,000.
As so many other Burzynski patients have done, Mackey and her family
took to fundraising, holding a yoga fundraiser and a golf fundraiser, among
other fundraisers, and, of course, taking to the web and Twitter. Knowing that Mackey died
on October 28, it’s truly saddening to read herTwitter feed and blog. While I encourage you to
read Mackey’s Twitter feed and her blog, I would strongly discourage any of you
from commenting there with anything other than messages of sympathy and
support. Remember, the family has just lost a daughter at far too young an age.
There is nothing to be gained from recriminations and criticisms on her blogs.
I trust that most of you won’t even think about doing that once you see her
story in more depth.
Bob Blaskiewicz over at Skeptical
Humanities has started a Storify
page that chronicles Rachael Mackey’s experiences with the Burzynski
Clinic. It begins with a CT scan that showed that Mackey’s tumor had started to
grow again and continues with her video blogs:
Here she is after the
antineoplaston therapy has started. Note that it’s dated a mere eight
days before her death:
About a week after starting antineoplaston therapy), about a day before
she posted the above video, Mackey Tweeted:
@jclucas25 having headaches can feel this brain tumor dying off!!! #Burzynski
— Rachael Mackey (@RaeMacks) October 20, 2012
Unfortunately, she was mistaken about the significance of her symptoms.
Eight days later,Rachael
Mackey died. We don’t know the details. We don’t need to know. She had a
terminal cancer, and most likely it was simply progression, although one can’t
rule out the possibility that the antineoplastons hastened her death. They are
not nearly as nontoxic as Burzynski claims, as I’ve documented
multiple times before. We can never know, however. Chances are, this
unfortunate young woman simply died of her disease and the antineoplastons did
nothing to slow its progression.
Burzynski fans frequently attack a straw man in which skeptics are said
to blame Burzynski for the deaths of patients like Rachael Mackey. They like to
present Burzynski as taking on hopeless cases, all in the name of advancing
cancer care by “personalizing” it (although, one should note, that
“personalization” and “targeting” almost always includes antineoplastons in
Burzynski’s hands, which doesn’t represent much in the way of “personalization”
to me). He’s presented as the Brave Maverick Doctor willing
to take on The Establishment because, well, he just cares so deeply about his
patients, and, given the really sick patients who flock to his clinic,
Burzynski can’t really be blamed if nearly all of them die, can he? It’s not
fair, right? After all, nearly all of them would have died anyway with conventional
therapy, right?
Not exactly
.
When it comes to caring for patients with advanced cancers, there’s
more to consider than whether the patient lives or dies or how long she lives.
In the case of terminally ill patients who can’t be saved, there are two goals
that are foremost. First, we want to prolong life as much as we can, as long as
the side effects are not prohibitive. Then, if it’s not possible to prolong
life (or not possible to do so without unacceptable side effects), there’s
palliation, which is arguably the most important of all. It’s also something
that “conventional medicine” is becoming better and better at. There’s the
chance to die at home with dignity. There’s not being forced to exhaust all of
one’s resources (and often much of one’s family’s resources) and having to go
to great lengths in the final months or even weeks of one’s life to raise tens
or hundreds of thousands of dollars to pay for Burzynski’s treatments before
death arrives. There’s providing a realistic picture of what the patient is
likely to expect, so that she can put her affairs in order before she is unable
to do so and make informed decisions about her health care. As difficult as it
is, that’s real empowerment, not the false empowerment given when someone like
Burzynski tells a patient that he can possibly save her where conventional
medicine cannot. These are not insignificant things to cancer patients and
their families. They are also exactly the things that Burzynski robs his
patients of.
No comments:
Post a Comment