Daniel Hauser, fundraising, and "health freedom"

Today is a very good day indeed.

I say that because Daniel Hauser, the 13-year-old boy with Hodgkin's lymphoma who ran away with his mother to avoid having to undergo chemotherapy ordered by a judge, who had found that his parents were engaging in medical neglect in not getting him effective treatment, and returned on Monday, will begin his course of chemotherapy today. I'm very happy to hear that Daniel and his parents have decided to stop fighting:

After Daniel and his mother returned to Minnesota this week, both his parents told a judge they will let Daniel undergo chemotherapy because they now understand it is necessary to save his life. They said they were setting aside their religious objection to it, and the judge allowed them to keep custody of Daniel.

This is very good. If the parents are on board (or at least not fighting any more and willing to support Daniel through the difficult times he will face undergoing chemotherapy and radiation), then Daniel is more likely to be cooperative and more likely to get his full course of therapy without interruption, thus maximizing his chances of survival. However, there have been bits of news coming out that are not quite as good. For example, unfortunately, the Hausers are also beginning a campaign to raise money, which doesn't seem to be for chemotherapy, but rather for woo:

MINNEAPOLIS -- The family of a cancer-stricken 13-year-old boy who fled Minnesota with his mother because they objected to chemotherapy are turning to the Web to raise money for their expenses, which could mount as he restarts the therapy Thursday.

Daniel Hauser and his mother are back in Minnesota after nearly a week on the run. His parents, Colleen and Anthony Hauser, agreed to let Daniel receive chemotherapy for a growing tumor caused by Hodgkin's lymphoma despite their preference for alternative healing.

To raise money for the Hausers and help Daniel communicate with the public, family attorney Calvin Johnson has set up a Web site, www.dannyhauser.com.
Johnson said today he understands that the Hausers have health insurance, but they face legal bills and the costs of alternative medicines not covered by insurance.

This all smells rather fishy to me. This website was set up by the family lawyer and is vague about what the funds will pay for. Now, a legal defense fund for Daniel in and of itself wouldn't have set my skeptical antennae a'twitchin' were it not for this on the website:

Please understand that your contribution will not be refunded. We do not have the means or the resources to be able to that. Please give what you can. Your hopes and prayers are the most precious of gifts.

Please remember that I am a simple, country lawyer with no real expertise in computers. I am asking others to assist in this endeavor. Please understand that the money you send will not be controlled by me. I have a legal fiduciary duty to my clients. It is their money, to spend as they need.

This is not a tax-deductable contribution.
Thank you for your consideration.

Sincerely
Calvin P. Johnson
Attorney at Law

Whenever I hear a lawyer pull that "I'm just a simple country lawyer" schtick, I do two things. First, I put my hand on my wallet. Tightly. Second, I become very, very wary, because inevitably it's a tactic designed to try to make me drop my guard by making me think this lawyer is a bumbling simpleton who is outmatched by us city slickers. Unfortunately, the contributions will probably come pouring in.

What's more disturbing about this website is the content, however, which makes me wonder where the money will go even more. It's pure propaganda for quackery, full of the same nonsense, logical fallacies, and pseudoscience regular readers of this blog are used to my applying some serious "insolence" to. Look at the front page, where Johnson reprints part of his arguments before the court on Daniel's behalf:

This is a simple case.  This Court has always held, from day one, to the steadfast principle of protecting our children.  We do not harm our children.  We do not torture our children.

Yet the path advocated by the State is one of torture and criminal action.
There is a reason why 91% of the oncologists on staff at McGill Cancer Centre in Montreal do not take chemotherapy or allow their family members to take it for cancer treatment.  It's too toxic, and not effective.  This is exactly as the standard of medical care advocated and pronounced by Dr. Shealy.

This matter has been pummeled to death with the percentage of a 90% cure rate.  And yet we come to find that a cure rate can be defined as "tumor shrinkage" but not the elimination of cancer, at all.  In fact, given the statistics as provided to this Court, and demonstrated by a reputable, peer-reviewed, journal (Clinical Oncology, 2004; 16:549-560.), the real rate of survival hovers around 35-40%.

Mr. Johnson, you should never, ever quote an article if you're not ready for someone like me to look it up and see if it says what you say it does. Guess what? It doesn't! Johnson completely misrepresents what this article says and stupidly ignores the fact that this study is utterly irrelevant to Daniel's case. In fact, if he had included the title of the article to which he referred, the deception would be completely obvious: The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies.

That's adult malignancies, Mr. Johnson. Adult Hodgkin's disease behaves differently from childhood Hodgkin's disease. It's not as highly curable, and survival rates decline with age. Don't get me wrong. Adult Hodgkin's disease is among the most highly treatable forms of adult cancer, but it is not as curable as childhood Hodgkin's disease, and comparing a group that includes 70 year olds to children is not a valid comparison.. In any case, as I've said before, I love it when woo-meisters cite this article because it is so very, very easy to rebut, and rebut it I have as part of another post. I must admit that I've never seen it applied to arguments against chemotherapy for Hodgkin's disease. Usually its incredibly flawed conclusion that "only 2.3%" of cancer patients' survival can be attributed to cytotoxic chemotherapy, a number they custom-designed to make as low as possible, is trotted out by supporters of quackery to argue that chemotherapy is useless. But even in the context of Johnson's misuse of this study, it doesn't say what he claims it does. No wonder he lost the case if this is how he represented this study!

Let's see how the authors calculated their figures for Hodgkin's disease:

ICD-9: 201; incidence: 341 (Australia), 846 (SEER).

Early stage disease: (I or IIA): incidence: 341 Ã 68% of total = 232 (Australia), 846 Ã 61% of total = 516 (SEER).

Radiotherapy has been the standard treatment, although there is now a move to combine chemotherapy and radiotherapy to minimise long-term complications. In a meta-analysis of the initial treatment of early stage Hodgkin's disease [83], the addition of chemotherapy to radiotherapy, or the use of more extensive radiotherapy fields, had a large effect on relapse, but only a small effect on overall survival. If initial treatment had been radiotherapy alone, many recurrences could be salvaged with chemotherapy alone or with bone-marrow transplantation. This represents an improvement in 5-year survival to 95% from 80% with radiotherapy alone.

Advanced disease (IIB-IV): incidence: 341 Ã 32% of total = 109 (Australia), 846 Ã 39% of total = 330 (SEER).

Chemotherapy is the established treatment [1]. In stage IIB-IV, Hodgkin's disease chemotherapy results in an 80% 5-year overall survival, including those receiving bone-marrow transplantation [84].

This makes it unclear to me how the authors figured out the survival in adult Hodgkin's disease attributable to chemotherapy and came up with 35.8% to 40.3%. My guess is that these numbers represent the averaging of the increase in survival that can be attributed to the addition of chemotherapy to the survival that is observed with radiation therapy alone in adults over all stages, not just earlier stage Hodgkin's. After all, that's what the review article seems to be saying, namely that these survivals are not the overall survival but the percentage survival that can be attributed to chemotherapy alone. Assuming that's the case, an improvement of survival by 35-40% over radiation alone is actually pretty impressive. Be that as it may, a far better measure of survival in children with Hodgkin's lymphoma would be something like this study and this graph:

i-be7cedebff2cc03ea136c4b59e9c2386-1748-717X-1-38-7.jpg

Bottom line: Mr. Johnson is deceptively comparing apples to oranges (adult Hodgkin's disease to childhood Hodgkin's disease) and confusing relative with absolute survival benefits, as he does here:

What is significant concerning the Clinical Oncology study, was a relative cure rate of 95% for Hodgkins, larger than the 90% given by Dr. Bostrom in his testimony.  The real number, or the absolute number of actual survivors for five years, was really 40.3%.  In Australia, that number dropped to 35.8%.

No, this is completely wrong. The reported survival rates even in the anti-chemotherapy study cited by Johnson were 90-95% for early stage Hodgkin's disease. Absolute survival, not relative survival. Johnson is correct that sometimes increases in survival are represented as relative increases. For example, decreasing a chance of dying from 30% to 15% with the addition of chemotherapy would be an absolute survival benefit of 15% but a relative survival benefit of 50%. But he clearly has no clue how to apply the terms or when he is looking at one or the other. Moreover, given that the survival for untreated Hodgkin's disease is close to zero, in the case of Hodgkin's disease, the relative survival benefit due to treatment with radiation therapy and chemotherapy is, in fact, so close to the absolute survival number that for all intents and purposes they may be treated as being the same number.

Hmmm. Come to think of it, perhaps Johnson is just a simple country lawyer after all, the operative word being "simple." Or maybe he just demonstrates the same level of knowledge about cancer and medical science as the "alternative" medicine boosters he represents; i.e., either zero or nothing but gross distortions of real science. Indeed, I think that may be the case, given the rest of the ignorant blather in his arguments for Daniel. Again, if this was the quality of the case he presented, no wonder he lost and lost big. Perhaps Danny needs a new lawyer, particularly given that his current one actually used as part of his argument to the court such a lame Internet urban legend among the anti-chemotherapy "natural cancer cures" crowd:

There is a reason why 91% of the oncologists on staff at McGill Cancer Centre in Montreal do not take chemotherapy or allow their family members to take it for cancer treatment.  It's too toxic, and not effective.  This is exactly as the standard of medical care advocated and pronounced by Dr. Shealy.

Ah, yes. Another dubious "study" that you will find in many, many places cited by many, many alt-med mavens as "evidence" that doctors don't trust chemotherapy and think it's useless. Unfortunately, it is evidence of nothing of the sort. Michael Simpson pointed out in a comment that this study is 20 years old, was never published in a peer-reviewed journal, and was specifically about the use of Cisplatin to treat nonsmall cell lung cancer. Apparently the oncologists at McGill were not fans of Cisplatin for this particular cancer. The survey said nothing about the opinions of oncologists about chemotherapy in general.

The simple country lawyer strikes again. Simply. Indeed, the rest of Johnson's rant is nothing more than the same sort of nonsense about the quackery (pH "balanced" water, etc.) Daniel wanted to pursue, along with frequent allusions to chemotherapy as being poison and/or torture, along with lots of appeals to "health freedom." Indeed, a prominent link to the National Health Freedom Coalition is included on Danny's website. Oddly enough there are no links to the Nemenhah website, which strikes me as odd, given that that faux Native American "religion" run by a wannabe who took the name Chief "Cloudpiler" was supposedly the whole reason that was used by the Hausers and their lawyers to justify Daniel's refusal to continue chemotherapy. Wasn't it the religion? Maybe I was right when I speculated that religion was just a convenient excuse. In any case, it makes me wonder of the NHFC was behind this propaganda effort all along.

Unfortunately, Daniel's case has become yet another cause célèbre. He has, in essence, been transformed into a convenient tool to be used by the forces arrayed against science-based medicine. Fortunately (and this is perhaps one of the rare cases where I would ever say that about a woo-friendly hospital), the Children's Hospitals and Clinics of Minnesota in Minneapolis has a highly active "complementary and alternative medicine" service, as this video shows. Moreover, one of his oncologists, Dr. Bruce Bostrom, is seriously into woo. From a psychological standpoint, perhaps this woo can persuade the Hausers not to start balking at the chemotherapy again. Of course, assuming Hauser survives, as is much more likely now, no doubt he'll credit the woo instead of the chemotherapy. He may well become another Billy Best or Abraham Cherrix. Certainly Mr. Johnson is trying to use the same sorts of dubious and unconvincing arguments for "alternative" therapy in order to make him so.

That's a risk I'm more than happy to take. At least Daniel be alive, with the rest of his life ahead of him. If, thanks to woo-loving lawyers like Mr. Johnson, he attributes his survival to quackery instead of chemotherapy and radiation, that may just be part of the price society will have to pay to get him treated.

Orac's commentary

  1. Another child sacrificing himself on the altar of irrational belief
  2. Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?
  3. Judge John Rodenberg gives chemotherapy refusenik Daniel Hauser a chance to live
  4. Mike Adams brings home the crazy over the Daniel Hauser case
  5. The case of chemotherapy refusenik Daniel Hauser: I was afraid of this
  6. Chemotherapy versus death from cancer
  7. Chemotherapy refusenik Daniel Hauser: On the way to Mexico with his mother?
  8. An astoundingly inaccurate headline about the Daniel Hauser case
  9. Good news for Daniel Hauser!
  10. Daniel Hauser, fundraising, and "health freedom"
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Over the last couple of weeks, I've been blogging regularly about the case of Daniel Hauser, the 13-year-old boy with stage 2B Hodgkin's lymphoma who, after one course of chemotherapy in January, refused to undergo any more, citing a faux religion run by a woo-meister naturopath and Native American…

I'm just a simple representative of some very rich people having trouble transferring their money in Nigeria.

I suspect that this will not be much different from any other patient promoting alternative medicine. He will claim that it was all the quack treatment and convince many others to avoid real treatment, until it is too late. Then he will criticize them for not having enough faith and he will blame the conventional treatments, too.

The "simple country lawyer" knows enough to pay somebody to create a website.
The Facebook site has lots of comments, split more or less evenly between woosters claiming hundreds of "no-chemo cures" (but not providing any documentation, natch) and cancer survivors urging Danny to continue with the chemo. Maybe Orac would like to weigh in there with a comment?

What is a legal defense fund for? It is only to pay for legal stuff, to pay for lawyers.

It probably is better for people to send money to this lawyer than to spend it on woo for themselves. Think of it as "harm reduction".

That is why he is making it into a woo-fest. He wants to scam as much money as he can.

Reminds me of the late, great Phil Hartman character "Caveman lawyer".

Scene: Caveman in a suit and tie, clearly intoxicated, on a plane in First class.

Cue Hartman:
"I don't understand these fancy flying machines, and these modern ways... they scare me...I'm just a caveman ....
Now get me another scotch or I'm sueing every last one of you!!

Apparently the oncologists at McGill were not fans of Cisplatin.

This statement is still an overgeneralization. McGill oncologists were apparently not fans of CDDP in NSCLC in the 1980s. If asked if they'd take cisplat for testicular cancer, I bet the two top answers would be, "Hell yes!" and "My risk of testicular cancer is nonexistent." I doubt any oncologist would refuse cisplatin in a disease which has a near 100% cure rate*. Furthermore, the supportive care now is vastly better than in the 1980s. So much that quoting a study from the 1980s concerning the use of cisplatin and risk of toxicity is a bit like asking airline executives if they'd cross the Atlantic in a Comet-1 and concluding that airline executives don't trust their own aircraft if they said "no."

*In one study from Germany, men with testicular cancer had a slightly higher 5-year survival rate than men without, probably because they were more aware of their health and less likely to spend their time getting drunk and stupid. Or maybe it was just a statistical fluke. In any case, an amusing result.

I've said all along, give the kid treatment. He'll never believe that it saved his life, but what can you do.

Thanks for detailing the data. My gut responded that it was wrong but I was unable to crunch the data to prove it. So great to have someone around who "shows all work".

I've said all along, give the kid treatment. He'll never believe that it saved his life, but what can you do.

Thanks for detailing the data. My gut responded that it was wrong but I was unable to crunch the data to prove it. So great to have someone around who "shows all work".

Oh great. Trying to save the life of a young boy has now led to starting a fundraising scam and saving his life with 'erbs on the back of the hardwork of the medical staff and courts. WHILE stabbing them in the back. That is piss-poor.

-If, thanks to woo-loving lawyers like Mr. Johnson, he attributes his survival to quackery instead of chemotherapy and radiation, that may just be part of the price society will have to pay to get him treated.-

erm. no..no i can think of people that need it more and would be grateful for it. I say pull the chemo.

Oh great medicine man, heal thyself.

By Richard Eis (not verified) on 28 May 2009 #permalink

Sounds like that Susan Daya woman wasn't the first lawyer to exploit the Hausers. I suspect they got pegged as easy marks early on, and were routinely fleeced until the legal attention got too hot to handle. Very sad.

About the "simple country lawyer" schtick, I know one lawyer who uses it. Based on his use of it, I've always felt it indicated a Wally-esque level of incompetence. But that might not be the case for this particular lawyer. Hard to say. I've dealt with few laywers in my life, but enough to know that if they're any good at what they do, you really shouldn't take them at face value. The most talented ones are extremely devious.

By Calli Arcale (not verified) on 28 May 2009 #permalink

So, the lawyer set up a legal defense fund for his client so his bills get paid. And any excess is "non-refundable". I guess there isn't something like ethic violations for lawyers.

Well, I'm glad to see this kid getting his treatment, and hopefully his family will follow through with it enough that he'll survive. The sad part is that he'll continue to use herbs and magic water, and then assume that those things are what cured him. This family will still spread their belief in woo, possible resulting in other people dying from their advice, but at least this one life will be saved. I guess I should try to be optimistic and be thankful for that.

-This family will still spread their belief in woo, possible resulting in other people dying from their advice, but at least this one life will be saved.-

Doesn't sound much to be thankful for.

By Richard Eis (not verified) on 28 May 2009 #permalink

I'll ask this again as comments have focussed only on the sheister lawyer. Who IS this doc in Minnesota who's "seriously into woo"? How can we fight this stuff if doctors and hospitals go along with it? How does anyone get through medical school and end up doing woo?

Also, can the woosters not donate their "treatments" (as doctors sometimes do) if they really want to help? And Daniel wouldn't need a lawyer if his parents weren't so stupid to begin with.

I clicked through on the lawyer's name and found this:
"He specializes in practicing criminal defense, exclusively." Is this a criminal case? (It should be, I'd argue, and I still worry about the other Hauser children that keep going unmentioned. But is it?)

By Prup (aka Jim … (not verified) on 28 May 2009 #permalink

It appears that the webpage has been taken down.

By Arnold T Pants (not verified) on 28 May 2009 #permalink

I apologize for the anecdotal digression. My beloved wife of 18 years received chemotherapy for her Hodgkin's Disease 22 years ago. It was unpleasant as hell and totally worth it for her and everyone she has known.

By Pliny-the-in-Between (not verified) on 28 May 2009 #permalink

Re: Comment 11. There are ethical standards for lawyers, but as long as he does co-mingle his personal funds with the client funds and doesn't take money for work he hasn't done, he's pretty much in the clear.

It appears that the webpage has been taken down.

Damn, it's not in the Google cache yet, either. I knew I should have saved critical web pages from the site...

On the other hand, I'd like to think that the power of Respectful Insolence led to this outcome. :-)

@Broken Link

Nice editorial. Check out the comments, though. One of the most recent is posted by someone posing as "pauloffit" and includes NVIC and the usual anti-vax canards. You (and everyone here) may want to FLAG for removal. Cite it as fradulent posting and personal attack. And be sure to explain who Dr. Offit is, so the modmins take faster action.

By Rogue Epidemiologist (not verified) on 28 May 2009 #permalink

The "simple country lawyer" ought to know that libelling the McGill Cancer Centre like that is a no-no. I wonder if McGill knows about it; I bet they take stuff like that fairly seriously, as they do have a reputation to uphold.

By Interrobang (not verified) on 28 May 2009 #permalink

I think Mr. Johnson has watched too many Matlock episodes...or is counting on others to have watched too much Matlock. There are some cliches that an intelligent person should avoid, and the "simple country whatever" cliche is one of the them. My reaction to reading that also set off my bs detector and makes me clutch my wallet protectively...incidentally, if you're in a crowd and someone on a stage tells you to watch for pickpockets don't immediately check for your wallet...that just tells the spotters in the crowd in which pocket you've stashed your wallet. :)

By Daniel J. Andrews (not verified) on 28 May 2009 #permalink

AHHHHHH:

Because of public perception, the Hauserâs have requested that this web site be closed until all ramifications have been explored. Please see daily press updates at www.calvinpjohnson.com. We apologize for the inconvenience.

Public perception. Yeah, it probably sucks to be perceived by the public as a manipulative, mendacious ghoul.

By Jennifer B. Ph… (not verified) on 28 May 2009 #permalink

Normally, I am a generous and easy-going fellow, but this whole fundraising idea for the Hausers leaves me cold and heartless. My sympathy for this family ended when the Mrs. took off running with Daniel, and they got involved in a video production. They are either real simple country folk or the cleverest con men in Minnesota.

If Susan Daya Hamwi did play a part in their leaving, as alleged, then some of my heartlessness may soften a little. If the Pezzutos in LA are really helping the family out of the goodness of their lalaland hearts, then I will soften some more. But generally, I smell a rat in this whole saga. I just don't know which rat is stinking up the joint.

"You see, I am a medicine man. Some times we teach, and some times we perform. Now, I am doing both. I will lead by example. On my spiritual path, I am also known as a Great Spirit. I have lived many times before. So, 13 years is nothing to me."

(from the web site)

Interesting. I wonder if my post ripping the misinformation and abuse of the scientific literature by Mr. Johnson had anything to do with it. I hope so.

As I said before, if those were the actual arguments that Johnson used before the court, it's no wonder Danny lost. If I were advising the Hausers, I'd tell them that they really, really need a new lawyer, and not some hack representing the faux Native American religion that got Danny into trouble.

Reportedly his second treatment did not go very well:

MINNEAPOLIS (AP) â The family of 13-year-old cancer patient Daniel Hauser says the boy is feeling sick after a second round of chemotherapy that was ordered by a court.
Hauserâs mother, Colleen, took him on a weeklong run from the law over the familyâs opposition to traditional cancer treatments. After they returned, the family consented to chemotherapy or faced losing custody of Daniel.
A family spokesman says Friday that Daniel has been vomiting all day after his chemotherapy session a day earlier. Nauseau and vomiting are a common side effect of chemotherapy.
The spokesman says Daniel is angry and depressed at feeling sick after a similar response to an earlier round of chemotherapy in January.

--

I feel for this kid. I mean,vomiting is third on my list of Things I Most Wish to Avoid. Is he getting Zofran? Kytril? Anything? I had the heaves a couple of times during chemotherapy but I never actually vomited, not once. I have to wonder if Danny's anticipation of being sick is so strong that it's become a self-fulfilling prophecy.

So I wonder how long it's going to take before we find out he's once again refusing treatment? I hope he hangs in there, but I've gotten the impression all along that he's having a really hard time handling all of this and could use some heavy-duty counseling.

The lawyer situation is highly questionable here. There are three different lawyers involved and two of them are mainly business people with strong connections to the entertainment industry who might be trying to make a buck off of this rather than simply representing their client.

I notice that the Simple Country Lawyer's new site is a self-build, using an online sitebuilder. He appears to have abruptly parted company with the guy who designed the original site. Could be an interesting story there.....

I've read the copy on both the old site (heavy woo-woo) and new site (lite woo-woo). The first site read like Cloudpiler himself had written it. The newer is a little more sensible, but it states Johnson advised them to evade a court order.

The Hausers have surrounded themselves with nutjobs. I suspected Susan Daya Hamwi encouraged them to leave -- she paid for their airline tickets. Now Johnson is admitting he told them to leave? If I were the judge there, I'd throw the book at both these shysters.

It makes me wonder whether Johnson also belongs to the Nemenhah Band.

Just as an aside, Johnson also registered the domain name dannyhauser.net. The Mankato web developer is still the name server for that. Dannyhauser.org, meanwhile, was registered on March 29 by Sarah Elizabeth Clay, BC&A International, LLC, of Derwood, Maryland. Hostmonster.com is the name server for both dannyhauser.org and .com.

Neither the .org or the .net site has any content, but there are signs they might be (or have been) in development.

Ms Clay's biographical info is here: http://www.wisneskiinstitute.org/SEC.html She is a lobbyist.

I am curious to hear Orac's take on Sarah Elizabeth Clay and the Wisneski Institute. They seem to have some woo-ishness about them.