The Burzynski Case and the Pitfalls of Medical Journalism, with Tamar Wilner
Medical doctors can hold our lives in their hands. But with great power comes great responsibility, and doctors owe it to their patients to provide accurate information and treatments based on science and evidence. This is the standard we expect and take for granted; yet one doctor, Stanislaw Burzynski, has been skirting medical ethics and scientific protocols for decades with his controversial and unproven cancer treatments, which he claims without evidence, can destroy cancer cells. The Center for Inquiry, which produces this podcast, has worked to expose Burzynski's treatments and for the FDA to reinstate restrictions on his dubious medical trials.
This week, Point of Inquiry welcomes science journalist Tamar Wilner to discuss the most recent progress in the Burzynski case, and what it's like to pursue the hard truth within such a murky and emotionally fraught situation. Wilner is a frequent contributor to the Columbia Journalism Review and a consultant for the Fact Checking Project at the American Press Institute; she's written numerous articles on controversial science issues including her recent Newsweek feature, "Cancer 'Visionary' Stanislaw Burzynski Stands Trial for Unprecedented Medical Malfeasance." She's also been featured at Skeptical Inquirer with a piece entitled "Five Things I Learned Writting about Stanislaw Burzynski."
A further explanation of Burzynski's treatments, the lack of science behind them, and his run-ins with medical authorities can be found in a feature by Dr. David Gorski in the March-April 2014 issue of Skeptical Inquirer
This is point of inquiry for Monday, April 18th, 2016.
Hello and welcome to a point of inquiry. A production of the Center for Inquiry. I'm your host, Lindsay Beyerstein. And my guest today is Tamar Wellner, a science journalist who has published hundreds of articles on scientific issues. She's a frequent contributor to the Columbia Journalism Review and a consultant on the fact checking project at the American Press Institute. She's the author of a recent Newsweek feature entitled Cancer Visionary. Stanislaw Burzynski Stands Trial for Unprecedented Medical Malfeasance. Brzezinski is a controversial doctor who's been offer his patients unproven cancer treatment for decades after several FDA investigations and repeated attempts from the Texas Medical Board to shut him down. He refuses to discontinue his practice. In addition to reporting on the recent trial, Tamara has also written a piece for psychopathy at work called Five Things I Learned from Writing about Stanislaw Burzynski, a piece about how the Burzynski case challenged her as a journalist and science communicator and prompted her to reflect on the differences between the two disciplines. Tomorrow, welcome to Point of Inquiry.
Thank you very much for having me.
So tell us about Stanislaw Burzynski and the reporting that you've been doing on him lately.
Sure. So I. I started writing about this. I guess I started looking into him about this time last year. And at that point, quite a lot had been written about him already. So, you know, I'm really kind of standing on the shoulders of giants in terms of people who have looked at what he's been doing for many, many years. But I you know, I heard about him and I've heard that there was a case before the Texas Medical Board to possibly revoke his license. So I thought, well, this is a good time to revisit and to see what might come out of this case, because some people seem to think that maybe this time it might actually result in his license being revoked. So I just started looking into that last year and really got going in November when his hearing started. And, you know, from then there's just a lot of research and interviewing to be done and had an article come out about it in Newsweek in late February that that came out.
And what is the latest on the status of his medical license?
The latest is I mean, he has a medical license at the moment. There's no suspension or anything on it. The trial or I guess technically hearing was originally supposed to be it's been pushed back many times. And when it started in November, the schedule was that it was supposed to start in November. They would do a hiatus for the holidays and they would pick up again in January. And then he actually suffered a sudden heart ailment. And so his lawyers petition to have the second part of the trial pushed back again. So now that is actually a severe to be perfectly honest, I haven't checked the docket in a few days, so I should probably check that to be absolutely sure. But last I saw, that was supposed to be starting up again in May.
So what is Brzezinski's his approach to treating cancer that's gotten him in so much trouble?
Well, it's kind of I think of it as kind of breaking into two parts or two main modes of treatment. But what he really became famous for was a group of substances that he isolated called Antineoplaston. And that's a kind of a collection of peptides and amino acids.
He originally isolated from human blood and human urine, and then he later started synthesizing. And, you know, he became very famous for that because on the one hand, for people who went to him and had success with that treatment or apparent success, you know, they felt that he was doing something that conventional treatments couldn't do. But at the same time, you know, there's really no scientific evidence to show that antineoplaston work. So he he had quite a number of trials that he was running through that that were approved by the FDA. And throughout the years, the FDA has several investigations of him and at one point put his trials on hold. That was precipitated by the death of a six year old boy who was was one of the trials. The FDA began to gather evidence that's a number of people were suffering certain side effects from the Anthony Alaskan's especially. They were having very high sodium levels. And it seemed that he was not making that very clear that the materials that he was putting out, publicizing his trials or informing patients about his trials really kind of downplayed the risks. So you kind of basically the problem with Anthony Parsons was a combination of very little evidence that they work and patients really putting themselves at risk from side effects. So that was going on for many, many years. And it seems that because of the continued problems that he's had with FDA, that he's kind of curtailed his use of antineoplaston. He's not on hold right now, but the FDA has a lot of restrictions on that kind of. Prevent him from giving them to a lot of people. So what he started to do or what his practice was kind of moved more towards is using drugs that are approved, but using them in untested and unproven combinations. And so what the Texas Medical Board trial has really focused on is they have something on the order of 10 or 15 patients that they've really concentrated on where he was giving drugs in in these untested and unproven combinations. And these are things that have been approved and worked well for treating cancer in isolation. But he was maybe applying them to cancers where they haven't previously been used or giving certain things in very high doses. And a lot of these things, when you combine them, the side effects really become compounded. So the medical expert that the Texas Medical Board had testifying for them, basically Herson Nation was this is experimenting on people. You know, we don't have evidence that these work. We have a lot of concerns about the side effects that these cause. And you can't just go giving people combinations of drugs in the hope that it might do something. We really need medicine to be more systematic than that.
You said that he's been called up before the board before and he's gotten out of it previous times. What do you think might be different about this time around that he might actually face consequences?
You know, it's hard to say. I mean, I kind of I have had a couple of people who are familiar with the case tell me that they have a feeling it's going to be different this time. I don't know that I can point to anything in particular. You might argue that third time's the charm or it's time or however you you want to look at it.
In this case, someone just gets brought before the medical board enough times. Maybe the judges will kind of look at that and say, look, this this guy has really shown himself to be a problem time and time again. So I'm not sure, like, I wouldn't argue that myself. I mean, I guess I'm just waiting to see what happens.
Does this suggest a structural problem with the way in which doctors are regulated? I mean, it seems like he keeps winning because doctors have such vast discretion to do basically whatever the hell they want.
Yeah, I think it does suggest some some systematic problems. The way that the state medical boards are set up is really to go after the most egregious cases and in cases that are egregious, often in a particular way. So they're best suited to investigating. Well, it's hard to generalize state by state. I think a lot of them are this way in Texas is this way that they're best suited to calling out doctors who basically run drug mills, read that, write prescriptions or who are charging for work they didn't do or great have drug problems or, you know, sort of very sick things that are bad by anybody's definition of the practice of medicine.
Like you're not supposed to steal from your patients. You're not supposed to sexually assault your patients. You're not supposed to show up and work on your patients drunk.
Right. Right. And, you know, even some cases that have been really egregious, I mean, Brezinski is like one of those Zelma. He's like a chronic case. Right.
You can only get the scale of what his impact might be by looking at the thousands of patients and trying to evaluate some very, in some cases, subtle data. But when you look at people who are more like the acute cases. Right. Like there was a doctor in Texas who was just a terrible surgeon who just messed up completely basic operations and killed. I think at least one patient and left several patients sterilized.
And I remember that guy. Yeah. Yeah. Scandalize.
Yeah. And other. I mean, he was so bad that, you know, other doctors would look at his work and say, you know, it looks like he set out to do the surgery in the worst possible. It was like he was trying. I don't think it was malevolent, but he was so bad that it looked like he was trying to kill patients.
So even then, it took the medical board a while to get to him, right?
Exactly. Exactly. They have to get certain preponderance of evidence in and they don't have a system really to kind of put the medical license on hold while they are investigating. It's almost like they have to have pretty overwhelming evidence of guilt to even put it on hold. You know, it feels like there should be some kind of probationary system or some way when something looks suspect, say, OK, you're not going to practice while we're figuring this out. But there is no system like that.
Brzezinski is a very well-connected guy, I gather, in the Republican establishment. Do you get any sense of how his personal connections and power are shaping the outcome of the case?
I don't really see a lot of that playing out now, or at least I wasn't able to dig up any current evidence of that kind of influence.
I know that where that really came up was in the 1990s when Congress was holding hearings on the FDA investigations of him. And he definitely had some friends in Congress who were suggesting that the FDA was coming down too hard on him and was persecuting him. Joe Barton of Texas was one notable person. And if you look at his, you can look up his donation records and see. That he has given money to Joe Barton. He gave money to Rick Perry neither. I think in huge amounts. I think we're talking a thousand here, 2000 there. But, you know, there's there's evidence that there have been some connections in the past for the Texas establishment. And how that played out in a medical board case, I haven't seen anything. Any evidence of that really being a factor recently?
You post about the things you learned as a journalist covering Basinski when you decided to take this assignment. What did you hope to accomplish journalistically?
That's a good question. I, I wonder if maybe part of what I was hoping for was almost always subconscious. I mean on the surface I thought like this is a really interesting case of, you know, I see it as being emblematic of what is wrong with the health information environments in the Western world that people don't know what to believe. I mean, we're all taught to or most of us kind of learn early on to question authority. And and in many cases, that's a very good instinct. But we don't really know when we should question authority and when we should put trust in authority. And there's a lot of information on the Internet, of course, that can kind of build up as a seemingly good argument for. OK, here's a case where the authority doesn't have our best interests at heart and we have to do our own investigations.
And the authority does have our best interests at heart with the authority is delusional. I mean, I think Brezinski really believes he's helping people. Do you think.
Yeah, actually, let me clarify what I mean, because that's my impression, too. I know I've heard some people say that, you know, he's a quack. And of course, I have no way of knowing. My impression is that Brezinski believes in what he's doing. What I mean about the questioning of authority is, is more that the people who support Brezinski, like the people that I met at the hearing, often have a belief that there is basically a conspiracy. And I should say this is all his supporters. But a lot of them, that there's basically a conspiracy to keep the cure for cancer hidden. There is this cancer industrial complex collusion between the FDA, NIH, you know, major research institutions, drug companies, et cetera. So, you know, we as citizens have to find our own information and we have to seek these alternative treatments because they're being kept from us. So I just think he's a wonderful example of that kind of thinking at work. And the fact that these people are not stupid, they're often very well educated.
Jasinski claimed to be persecuted by the cancer industrial complex.
Yeah, he does. I was talking to him. I was just kind of listening, really. I was talking to some of his supporters and he during a break in the hearing, and he came out and was talking to them about what was going on. And I told him, I'm recording Turnbow, I'm a journalist. Is that OK? And they said, yes.
And he said that the major cancer research institutions are colluding with the government to keep him out because it's embarrassing to them that, oh, you know, here I am working independently on my own with no government money. And I've managed to find a cure for cancer and they haven't. So they want to shut me up. So that seems to be his point of view.
Interesting to know if there's been any national research on how widespread this conspiracy theory is about the cancer industrial complex I see cropping up in every single patient group. Whenever I research any kind of disease or treatment, you'll find somebody that's in there saying, yeah, the big government is suppressing homoeopathy. Big government is suppressing natural treatments for endometriosis like this just never ends. And I wonder if there's been any attempt to quantify how widespread it is in society.
That is a really good question. I'm not sure I would definitely I would like to look into that, because as you might know, as well as being a journalist, I'm also starting a master's program and and hope to go on and do a APHC in journalism and communication.
So I'm really interested. Thank you. Thanks. I didn't know that was I was under way. That's terrific.
Oh, OK. Oh yeah. Thank you. You know, I guess this also kind of taps into what we were saying about what you can and can't accomplish when you're writing stories for the mainstream media. You know, I was drawn to Basinski because I'm sort of interested him as just a case study of these kind of forces at work in our society and how we can try and enable people to make good health decisions. But I think to really address that, we have to kind of look at it on a really deeper level. We need people researching the like you say, like how prevalent are these points of view? And when you give people new information. How does that change or not change their minds? I should look this up. Actually, I wish I knew if that had been established with any certainty, but I definitely would look into that.
Were there some things you wanted to bring to the story that you were found that you weren't able to that for whatever reason that you found frustrating?
I think just the. I think just the whole what it says about the current health information environment aspect to it. You know, maybe I actually could have pushed my my editors a little more, but I, I didn't want to risk kind of when you take a story and you pitch it and you say, OK. It's about this guy in this case. If you start trying to generalize too much, that really looks like editorializing. Maybe it would be. Maybe that would be hard to do in the context of a story on Brezinski.
I mean, it's interesting in the blog post that you wrote about the experience, you talk about how you felt like you couldn't say that Brzezinski was emblematic of a society in which the natural is held up as good and the chemical is held up as bad. And I sort of spammer's of wondering, is that editorializing? MOAKES It seems like anthropologists and social scientists and even market research groups can tell you factually that, yes, there is such a mythos. Yeah, a lot of products based on it.
Yeah, I think so. You know what? I think what it boils down to was and I can't I can't blame Newsweek for this at all because I basically pitched them the story that I thought they would run. Right. And then I was like, okay, you know, my job is to stick to the brief.
And so I didn't really feel like they would want me to start making those larger points because they wanted a story about Brezinski. But I think that that story needs to be told, and I think it can be told. I don't want to make it seem like that can't be told in a mainstream media context.
It's just a little bit tricky to profile the food, babe would be a perfect place to do that. Yeah, to talk about the mythos.
Yeah. I mean, yeah. And, you know, there are a lot of people who are writing very well about this. Maybe there isn't anything for me to add because there are some people who are doing some excellent work. But I'm just trying to think about how we can kind of further that conversation.
I think one of the most important things that, you know, I'm trying to figure out how I can bring to the table and kind of bring to the mainstream media is to do it in a nonjudgmental way, because I think some of what's written about natural medicine and about this cultural divide, it kind of sets it up as this us versus them mentality.
Yeah. And recognizing the common heuristics that we all use and the sort of mental fallbacks that we all use, that there is there. But for the grace of God or not God go I that you know, I have certain I have lots of tendencies to be skeptical of authority. Like I I was inspired by Watergate to be a journalist who kind of says, like, you know, what is this lying liar hiding from me?
But, you know, how do we kind of take those very good inclinations and channel them and know when to apply and not apply them and make good decisions about our health? It is just all so complicated.
I'm wondering how we can all kind of try and have that conversation together and how can we teach that without seeming I mean, on the one hand, I feel there's always this double binds. You want to be the authority figure, you want to be the voice that's authoritative and data driven. But then at the same time, when you're talking about these questions, you may be replicating the structure of power that the person is rebelling against, that they don't want to be lectured to by somebody who knows what they're doing. They may want to discuss with peers. And how do you strike that balance as a communicator?
Yeah, I mean, like that is one of the major difficulties, I think, for health communication today. I mean, if you think about the fact that we rely on the government to do a lot of our health communication, which I mean, it it makes sense, right? It's health is a public good if you want people to vaccinate. And that's something that relies on everybody or close to everybody doing it. And it's something that we desire as a society than obviously the government would be involved in defending that information. But when people have just this deep seeded distrust of government and authority, then for that segment of the population, that tends not to work so well. And there's been a lot of research or at least some research to show that when you're trying to give people information that conflicts with their beliefs. One of the best things you can do is show that someone like them believes in it. You know, so like, if you're going to, let's say, trying to convince some climate skeptics, climate deniers that climate change is something they should be concerned about, you know, one way maybe you could go about that is show like all these Republicans are backing some action on climate change or or these big businesses are backing action on climate change. So, you know, maybe sometimes it's a matter of just finding the right party to deliver the message.
It seems like another big challenge is getting from the sort of presentation of authoritarian credentials moving from that to the giving and taking of reasons that if people were to adopt the position that we should do what people say when they have good reasons for it. And it turns out that some people in authority, in fact, have good reasons for asking us to do things, then maybe we can have a more principled way of deciding whether we should listen to people in authority or not, because sometimes they tell us to do something and they can't provide a good explanation as to why. And sometimes they can.
Yeah. I mean, that's tough. I mean, that sounds to me like ideally how we'd like to see it operate. Then I think about how we're all bombarded with so much information every day.
I mean, I'm a journalist and I was a philosophy major and I should be the first person to say that, like. Everything I believe, I believe because I've examined the reasons put forth that the person making it.
But I mean, that is just not possible. Like, how much stuff do I make? Because, OK, this person has seems to have been right in the past. And, you know, I agree with their philosophy. OK, I'm going to trust them on this. I mean, we all do it.
But in cases when you're not sure what to do when you're in the process of questioning. Well, you know, my current store belief doesn't tell me exactly what I should do about, say, mindfulness meditation for depression or something like that. Yes. I mean, even though we may not have an opinion on maybe the important thing is to sort of think about the space of reasons and maybe journalists could be ushering people more into the space of reasons. I feel like that's what we do all of the time when we question powerful figures, as we try and elicit from them the underlying reasons that the readers and viewers can then decide whether they're persuasive or not.
Yeah. Actually, I like that idea. I think that there could be a lot of mileage in that. Like, it's almost kind of it almost goes hand-in-hand with trying to open up journalism and make it more transparent to say to people like once you follow along with me as I write this story, as I pieced together these pieces and see the kind of ways that I pieced together these pieces in the logic that I used to reach this conclusion and see if you agree with me. I actually was just at a conference at Duke University and it was called Tech and Check, and it was about how we might be able to automate some parts of the fact checking process. So it's it's very early days on on that kind of work. There's a long road to go, but it's really kind of fascinating area. And one thing that someone brought up that people were starting to brainstorm on was like, what if we kind of game a fact checking? So, like, if I'm writing a fact check on something that this politician said, I could open it up to the readers and say, like, OK, here are some documents to get you started. You know, do your own research, see what you come up with and kind of compare notes. And I think that way maybe they could get more trust in journalists and see, like, OK. You know, we actually have a system for how we come up with the the the the reasoning that we do.
It's not just bias, but also open them up to kind of doing it themselves because, yeah, when people have so much information as if through it would only help to have everyone kind of practice their deduction skills. Maybe that should really start to become a mission of journalism.
In The Post, you talk about the journalistic process and how it's not as transparent to your subjects and we sometimes forget.
Yeah, talk a little bit about that. Yeah, yeah.
It really kind of struck me mostly after the piece was published, although I guess it's something that maybe even musing on for a while. But the number one reason that this came up was because I had some pushback from a woman, one of the patients that I interviewed. And it kind of revealed to me that we make. I think that journalists do make certain assumptions about what readers understand or what our interviewees understand about the journalistic process. So I interviewed her and recorded my interview and she named a few types of treatments that she'd been on. I mean, she basically, you know, she mentioned that she was on chemotherapy. She said Brezinski had me on a bunch of different drugs. I can't remember all the names. Then when I was writing it up, I emailed her and said, you mentioned there were some other drugs. Do you remember what the the names were? And she came back to me with one or two names. But then, you know, she said something to the effect of. And there were a bunch of others. So I think I mean, I think, you know, I could have done more to push her and say, like, okay, I need to see the full list. But my rationale is basically like, OK, she's going to tell me what what the key ones are. Right. I don't need to know. I mean, I know in my piece I'm not going to list every last drug that she took. Something is important to mention. She's going to mention it. And I think, you know, that was probably not a productive approach, but I think it's something that we do a lot, just sort of we almost expect our interviewees to kind of be gatekeepers of information, like to kind of do a little bit of our sifting for us. But if I haven't explicitly stated that to her and say, you know, look, if if I don't if there's something important and you're not saying it, it's not going to be reflected in the piece and you're you're not going to be happy with it. It's not gonna be completely accurate.
I find it interesting subject sometimes sort of seem to vacillate between the assumption that reporters knew absolutely everything already. And we're just like this God godlike third person, that they're adding small details. Who are these that we know absolutely nothing at all.
Are you talking about the people that we're interviewing? Some people, you know, you'll talk to and they'll like, I'm sure you know all about this. This, this, this and this. Yeah, yeah. I don't know why you would think I would know that there are people that think that you know absolutely nothing at all.
Yeah. Yeah, that's true. I have had those experiences. I mean, on the one hand, I suppose it would really be you know, that's another area that journalism needs to improve in that I think we do need people with greater subject knowledge. Yeah, people aren't really specialists in topics as much as they used to be because journalism. Has had to shed so many jobs and people kind of end up putting on different hats in their job and covering different beats. You know that that can be problematic. So, yeah, I guess maybe she was expecting that I would have all the exact questions to ask, you know, hey, did you take certain penalty iterates? I don't know. Maybe if I've been covering you might argue maybe if I've been covering this story for years or maybe if I'd written more about cancer treatments, I would have said, hey, sodium Valby iterators I want to ask about.
But he prescribed so many drugs, so hard to keep track of them all.
Yeah, exactly. Certainly that was I mean, I was not satisfied with the outcome of that. I feel like I did journalism the way that it was expected. I think I did my professional duty. But I you know, I feel bad because I really wanted the Brezinski supporters that I talked to, too. I mean, I knew they were never going to be 100 percent happy with a piece. Nick is my starting point is if the NIH says that there's no evidence for something, that's a pretty good indication. There's no evidence. And so we kind of start from different assumptions. But at least, you know, wanted them to feel that their experience was portrayed accurately. So that was kind of something that stuck with me.
That's all the time we have. Thank you so much for coming on the show.
OK. Thank you very much. I enjoyed it.