 Part two is it's all about the patients. It's all about the patients the patients Bob Blaskowitz Appears on the live web show virtual skeptics. Be sure to check that out. That's every week Yes, virtual skeptics. Awesome. He also writes of course for Swift blog Here is his haiku So just like I said, here's part two of this lecture. There is no part three There we go. Please welcome Bob Blaskowitz How are you doing? In November 2011 Stanislaw Brzezinski Came to the attention of skeptics when a representative of his clinic Guy by the name of Mark Stevens sent pseudo legal threats to bloggers around the world who are critical of the clinic Including Reese Morgan who doesn't tolerate that type of stuff Stevens had been hired according to the clinic to provide web optimization services He was fired when this particular Optimization tactic blew black blew back in the clinic's face though Brzezinski never retracted the promise of legal threats When I read about Brzezinski at the time, I realized that I'd come across him before Over a decade ago a friend of mine whose son was dying of a brain tumor Had asked me about a doctor out west who treated people with a substance isolated from urine I looked at it for her and had to tell her that he was probably a quack Since then I had forgotten the doctor's name, but I never forgave the person who made me break my friend's heart When Reese and the other bloggers were threatened I looked through the news databases For references to Brzezinski and the popular press I found stories of over a dozen desperate patients around the world raising vast sums of money From their communities to go to Brzezinski's Houston Clinic for his unproven treatment and my first blog post about Brzezinski I reported that out of the 17 patients I could find outcomes for in the press or online 16 of them were dead Further searches uncovered more patients and more deaths and at some point Hunting down information about Brzezinski's patients and and threw them what goes on inside the clinic became what I did in my spare time As I got increasingly interested in the story I learned a lot about how patients become convinced that the Brzezinski clinic might have something for them I'm surprised and depressed By how many people point to Suzanne Summers book as an authority In recent years ever since it was featured on Dr. Oz's radio show a lot of people report Yeah, a Lot of people report being being convinced by Eric Merle's utterly credulous patient exploitation film Brzezinski cancer is a serious business He named it apparently without irony Yeah, but I think the most persuasive pitch comes from his former patients the ones who happened to have lived The clinic itself appears to use these patients as Ambassadors collecting and distributing the names of current and former patients who'd be willing to promote the clinic This is a List of pancreatic cancer patients given to a prospective client And you can see that in the comments column at the far right and maybe you can't see Patients appear to have indicated they're willing to either talk to prospective patients to appear on the website Or to talk to the media. I follow up. I followed up on the patients listed here At the time this list was given to the prospective patient Joseph was alive, but he died well within the normal life expectancy given his diagnosis Joanne too was alive, but she was dead within a year of starting therapy Irene S would be dead within the month and When my friend got this list Maxine was already dead Patients who have survived Brzezinski's treatment understandably understandably mobilized to promote him But a cult of personality surrounds him like nothing I've ever seen Some of his foreign current Former and current patients run the Brzezinski patient group website Which offers a ready supply of not just overly optimistic, but almost completely uncritical stories to an end-stage cancer patient Or somebody with a dying child who hasn't had good news for months The story seemed to point to a way out and they invariably point to a cure And for you know for a patient a patient who or a parent whose kid has cancer Anything less than that kid living in a normal life is going to be seen as a failure So they have to take you know, they have to take that leap this glaring hope of The Brzezinski patient group not only blinds patients to the reality of their prospects at the clinic But also to the many gradations of a successful treatment from delaying the progression of disease to palliative care and relief of pain This massive glowing endorsement was on endorsements was until recently unmatched by any sort of sustained critical Commentary by former patients, and I suspect that's because the people who would have written it are all dead Actually, and this is a right little slice of hell The version of the Brzezinski patient group website that was up when Reese Morgan was threatened in 2011 and you see it at the left It had 103 patients as members As of mid-June, there were only 63 and 17 of those were on the very original site way back in 1999, which is about three patients added per year Now you can't assume that the role of names correlates directly to a success rate But it's not the steadily growing fan club that we expect from someone who's doing miraculous things for cancer patients So We skeptics have taken it upon ourselves to give a voice to the patients Brzezinski has unquestionably failed and to do that We established the other Brzezinski patient group here we Here we gather the stories that have been left by patients online in forums on Facebook on their personal web pages and blogs in the Media in databases on YouTube and on Twitter Every bit of information we've posted was publicly available to anyone with the time to find it and we've linked to all the original sources So you can compare our interpretation to what the patients originally said, you know, we're not afraid to bring the evidence These stories weren't meant to be evidence one way or the other about the efficacy of the treatment It is and always has been Brzezinski's job to provide that evidence These stories were meant to be visceral persuasive reminders that this is not a miracle cure We have about 50 patient stories written up right now Which is a which is less than one-tenth of the total number of patient names. We've been able to gather As the number of completed stories grew our website became something I don't think we anticipated We realized that there was a lot more to the story than just unproven chemotherapy as we followed the case of Amelia S As it unfolded online Her father wrote numerous detailed accounts of what the family was going through and the British media followed her story closely for months giving Brzezinski a lot of unearned publicity in the UK and November 2011 I said I sent a note to to dr. Gorski About an ecstatic update that Amelia's father had posted on the Amelia's miracle Facebook page In which he indicated that the Brzezinski clinic Felt that a cyst was forming inside of the tumor and this meant the tumor was dying I had no idea what to make of this. I thought that you know, it seemed weird. Could I have been wrong? From the outside it sure looked like the treatment was working And dr. Gorski's reply was that while it was possible That a tumor might break up like that from the inside that the pattern was far more far more typical of a tumor that had outgrown its blood supply When Amelia's physicians in the UK examined the same arm MRI they agreed with this interpretation If this had just been an isolated case you could think that maybe Amelia's father just went with The possibility he liked more, you know the interpretation he liked more But going through the stories after the first 50 patients or so that we've looked at No fewer than seven excitedly reported that the tumors were breaking up in the middle including all of these children here And the story of the boy at the upper right chase is the worst thing I've ever had to write And even Brzezinski is a minor player in the predatory Alternative medicine world that as it applies to to chase. It's a horrible thing One such child Cody appeared in his local paper And who reported quote after two visits visits to the Brzezinski clinic and around the clock treatment for almost six weeks His parents say a recent MRI shows the tumor has not grown and its core appears to be breaking up Cody has limited movement on his left side because a treatment sometimes causes the tumor to swell Putting pressure on the brainstem his parents said This was 20 years ago in 1994 and Again, this is just seven out of the first 50 when you consider that this client David reported that Brzezinski is treated at least 8,000 patients by now You'll understand the sense of urgency behind the recent Brzezinski campaign David and I This client had an exchange on one of my websites, which he mentions in the video And at the time his wife Janet was going through treatment for ovarian cancer her Oncologists had given her three and a half to five years maybe on standard treatment and they said that wasn't enough A year after our exchange Janet's now dead I Should point out that once we linked to this video the guy who filmed the interview a supporter by the name of Pete a very Vocal supporter by the name of Pete took the video down Essentially throwing Janet's story into a memory hole, which I find difficult to excuse The optimistic prognosis given to probable ischemic necrosis that actually kind of bounced along In MRIs is just one facet of a larger Pattern on the stories by patients and their families they frequently report That getting worse is a sign of getting better For instance one thirteen-year-old patient named Rory vomited after starting treatment the family reported that their nurse Marlene Quote explained that as the antineoplastins turn off the cancer cells they die and the white blood cells rush to the area to clear Out the dead cells this causes swelling which can cause the vomiting She said as unpleasant as it can be it's actually a good thing Rory died in 2005 The family of Sipatra and that's the chest port that they they installed to administer this treatment Who had a brainstem tumor reported? Quote we were told last Wednesday that is the antineoplastins work to kill the tumor cells It is normal for the brain tissue to swell with all the dead cells in there This swellings what creates the pressure and results in headaches and vomiting If this is the explanation that patients are being given it's a side effect of the treatment That does not appear on this recent informed consent form that every A&P patient signs Swelling is listed as a possible side effect under most commonly occurring side effects It has a reported frequency of 2% and it's likely related to the enormous sodium load that Brzezinski's A&P patients carry you would think that the tumor encroaching upon your damn brainstem Getting bigger would be listed as a serious side effect But yeah, so what are what are these? What are these nurses talking about patients deserve to have questions like this basic questions answered An especially egregious case of getting worse being interpreted as a sign of getting better appeared and the US news and world Report Andrea's family reported that she was given a 30% chance of recovery by the clinic for a glioblastoma Another brain tumor when Andrea experienced strong side effects her mother's her mother said the nurses were jubilant Quote they said this side effect was a sign the tumor was breaking up after the tumor doubled in size over the next few weeks Andrea flew down to Houston with a friend who was a nurse They were reportedly told the tumor was dissolving and that Andrea would be going back to work soon So the family put another seven thousand dollars on their credit card for a month of treatment What happened next was reported in the magazine quote Andrea died on the airplane home on October 1st her luggage full of anti-neoplastins According to the FDA patient report Andrea Quote did not die under Brzezinski's care She is listed as having withdrawn from treatment on September 30th two days before she died I stress again her family reported that her suitcase was full of anti-neoplastins Two and a half years later her parents report they were still paying off Brzezinski's bill and Speaking of billing The treatments are not free the most recent prices I've seen for starting anti-neoplastin therapy range between 20 to 30 thousand dollar down payment and something on the order of seventy five hundred dollars per month for treatment You know every month thereafter on Sepatra's website her father claimed that innumerable little fees were silently tacked on until one day He learned that despite his down payment that he was four thousand dollars in debt to the clinic and warn future patients To be careful another patient Kathy visited the clinic for treatment of breast cancer expecting to be put on anti-neoplastins Hoping to be she made it clear to the staff in videos She took that she did not want traditional chemotherapy the gene targeted therapy Seems to be off-label standard chemotherapy And she didn't want any standard chemotherapy at any point anybody working in the clinic anyone who had answered the phone Or had talked to her Could have told her that she was not going to be eligible for the treatment that she wanted anyone like a Greg Brzezinski Stan's son an heir apparent who she filmed a Session with could have told her she was ineligible for anti-neoplastins because she did not have brain cancer And so after her trip to Houston she posted This on YouTube and underneath there it says I made this video in anticipation The patient that I'd be receiving anti-neoplastins apparently after spending over thirty thousand dollars here I found out that the anti-neoplastins are only reserved for brain cancer patients who've already undergone chemo and radiation Using the black cell is the only thing left for me to do and that's a highly corrosive nasty thing that she's going to Lastly and this one act this one really upsets me is the story of Denise D another breast cancer patient with metastasis She was working full-time while in treatment. She was uninsured She was on the chemo cocktail route and she was getting all of her off-labeled drugs with patient assistance from the drug companies Nonetheless, she reported the clinic was going to charge her $1,500 a month to receive and hold on to her monthly supply of one drug Her vision of the confrontation with the billing representative is chilling When I talked with Barbara T the financial manager at the Brzezinski clinic and told her that the charge of a thousand dollars per infusion And an additional $1,500 a month to handle the three small vials of Zemeda was just more than I could afford She told me well we have to survive here You want to see Stan just barely scraping by Andy Lewis found a picture of the well you can't actually see the house. It's there's a gate there It's a 10-acre 15,000 square foot six million-dollar residence with 15 bathrooms saunas and swimming pools That's an electronic gate with his gilded initials a guy has to survive I guess So far Brzezinski has beaten the system the FDA has failed to protect these patients the justice system has failed these patients the Texas Medical Board So far has been unable to protect these most vulnerable patients So who's left to stand for them? And I think it's us. I think it's skeptics We may not be able to fill the professional or legal roles of these authorities But we can educate about the public about the form of quackery being practiced in Houston and The last year or so I think that the continued and increasing skeptical attention to this issue has made a great deal of difference in the national coverage of Brzezinski and hopefully in the prospects for patients Skeptics who have public publicly criticized Brzezinski have received communications from Disatisfied patients and their families. We've put them in touch with the media regulatory officials legal representation and each other Skeptics have taken it upon ourselves to jump in and offer what we have found to people who praise or recommend Brzezinski on the Brzezinski hashtag on Twitter When newspapers or media report uncritically on Brzezinski or on patient fundraisers to see him We make sure that editors are contacted and lastly when somebody is fully committed to going to the clinic It's useless and distressing honestly. They have a lot on their plate to try to dissuade them from going So instead we put together a tip sheet about how to protect yourselves if you do go to the Brzezinski clinic You tips like make sure that you get an itemized bill every day Make sure that you let them know that you're making an audio recording of everything that's being said Those of us who are working on this case have a couple of projects in the pipeline and if we pull them off I think they'll be big I think you'll be surprised and I'll actually kind of be surprised too But when we deliver these mighty carefully aim blows We're gonna need your help The help of the entire skeptical community to make the impact as big as possible and light as many fires under his butt as we can This is not the type of case I think where we can be half in because the people who perpetuate this will not be a Lot of the people who support Brzezinski believe that their lives literally depend on fighting for him that we are trying to kill them a Few examples of what they've done so far. Well, there've been Some tickle fights on Twitter Yeah The clinics man Stevens not only harassed this dissatisfied critical bloggers, but also harassed a dissatisfied former patients including Wayne and Lisa Marie Merritt Threatening them with legal action calling them at home Wayne is still ill with with pancreatic cancer by the way, and he's doing well In the spring of 2012 a website went up defaming skeptics critical of Brzezinski as pedophiles I'd like I'd like to point out here that I'm being defamed. I'm at the bottom. I'm being defamed alongside Steven Frye and Simon sing best definition ever But still I've been labeled a necrophiliac, you know I Don't think that dr. Gorski talked about this, but his his medical board has been contacted by patients Well, the director of the Brzezinski movies wrote to the chancellor of the university where I'd just been hired Siding the virtual skeptics web show that I do with some friends He misrepresented me to my new employer and asked them to comment about my quote extracurricular activities the filmmaker then after basically Promising to to smear me while linking me to my employer in millions of homes Honestly making me fear that I might You know receive death threats or God forbid my family might receive death threats After he did that he he seemed to have pulled the punch to included footage in his his movie that looked like this Ultimately the video that he used in his movie was so dishonestly and deceptively edited I have a feeling that his lawyer told him to wipe all identifiers or You know, maybe just wanted to terrorize skeptics So how can you help? Um We have an action alert sign-up sheet out at the IIG table and I'm asking you to go over and and to sign up Ask for your name and your email address I would only use this when something big is happening So you won't get spammed. I'll send out maybe a confirmation email after Tam but I'm gonna ask for 10 minutes of your time at some point over the next four months I'm asking for a commitment to help correct some of what we have seen here So please sign up at the IIG table and I promise you will find something awesome for you to do I'd like to close, you know, kind of where I started kind of back at my title the title of the talk comes from the cover of the book This book right here There it is It's Galileo's lawyer. Yeah, Galileo's lawyer by Brzezinski's lawyer Rick Jaffe And the cover looks like a legal pad with notes scrolled on it and But down at the bottom here in all caps It says it's all about the patience I know I'm gonna be the first skeptic ever to say this but I suddenly take great comfort knowing how Galileo's trial turned out Thank you Bob last quits Thank You Robert