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:

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"