RoR: Forum

Post 40

Wednesday, May 13 - 6:00am

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If anything, I hope I've shown that this issue is not so cut-and-dry -- that substituting state encroachment for the decisions of the thinking individuals directly involved is not necessarily the right way to go.

There is a certain fervor, I suspect, of folks ready to line up with their pitch-forks and burn these parents at the stake, based on their otherwise-innocent captivation by that old tune-of-the-flute sent out by the conventional medical experts and bureaucrats, the very people who stand to make or bolster money or power off of conventional treatment of this kid's disease.

I'm not saying it's wrong to listen to conventional experts (i.e., idea-anarchy), but I do think it's wrong to make judgements based solely on what has been filtered to us about this particular case -- though, I admit, that is usually how online forum commenting tends to work. I do this kind of judgement-from-afar myself. I do it a lot, actually.

Ed

Post 41

Wednesday, May 13 - 8:23am

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Ed conjectured:

Keep in mind, however, that what Luke is asking for, is for the parents to prove that they're not guilty (under the assumption that they are guilty until proven innocent).

I am doing no such thing.

I am simply suggesting that the parents have supplied absolutely no objective evidence for the efficacy of the proposed treatment of their child's deadly disease.

Nor can I view their abdication of parental responsibility as "innocent error." In the face of clear and impending fatal danger to their child, they have opted to follow spectral evidence rather than objective evidence for the efficacy of their proposed treatment. This evasion amounts to adequate cause to charge the parents with neglect.

This is "due process" and not "guilty until proven innocent."

That they appealed to their religion rather than to objective evidence for their choice only hurts rather than helps their case.

Even the impressive research Ed posted suggests that the alternatives work best in conjunction with conventional methods rather than without them.

Post 42

Wednesday, May 13 - 10:14am

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I like it that Ed is skeptical of government being there to look after rights, and I appreciate it that he knows how special interests can use conventional 'wisdom' to pervert justice for their own ends.

And each case has to be examined to see how it fits the principles involved...

But, it is a certainty that there are parents who are so wacky that they do put their children's lives in danger, just as there are parents who are so vicious that they endanger their kid's lives.

When one of those instances may be the case (when we have probable cause), the court needs to look at the situation. That is agreed upon by the left, the right, by everyone... except for anarchists and/or people that believe kids are more the property of their parents then rights bearing entities themselves, or people who somehow think it is up to the child to look out after themselves. There just aren't any other positions available.

I know that Ed is not an anarchist, that he believes that kids do have rights, and they aren't the property of their parents even though they don't have an adult's level of freedom, and I don't think he expects kids to defend their own rights.... So, he really agrees in principle, but just feels a need to fuss over some of the details - at least that's my take :-)

Post 43

Wednesday, May 13 - 8:39pm

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Luke,

It boils down to discovering who it is that needs justification -- who bears the "burden of proof" -- for their actions. The parents want the kid to go without chemotherapy, the state wants the kid to take chemotherapy. Now, it's a special case because it involves a dependent (the kid).

I'm sure we both agree that it is not ever acceptable for the state to question what individuals do with their own lives. I'm sure we agree that anytime the state ever has a question about how it is that you are living, that the "burden of proof" is on them. The state, before using force against you, would have to justify why it is that they feel the need to use force. They would have to "make a case" for using force. They might, for example, try to make a case that the way you lead your life is dangerous to yourself, or dangerous to others -- and that they are interested in minimizing the dangers (the risks) that anyone has to go through.

That's what happened with the Delaney Clause -- where pesticides that had ever caused cancer in any living thing in any tested amount, were all-of-a-sudden banned. It can often be a mistake for the state to work hard to try to minimize the risk that citizen's choose to have in their lives.

Now, we're talking about someone's kid. The kid has spoken in private with the judge. The parents have written out their defense. The prosecution has written out it's charge. All of this is as it should be in law. We sit on the side-lines. Scratch that. We sit far back in the bleachers, unable to see the game play with the naked eye. We use our own "binoculars" (the popular press) in order to understand what is going on -- so that we can pass judgement. We try to be members of the jury without the privileged access to the details.

You mention how religion damns you (hehe, that's ironic). But what if the religion-talk is a crafted spin? What if two questions were asked, but only one got printed? Here's how you spin a story in order to play on peoples' emotions. Behind the scenes, you ask the parents why they don't want chemotherapy. They tell you they've been talking to some experts who estimate the boy's chances of survival at 85% with alternative therapy.

You say to them, "Okay, but do you have any other reasons -- like religion -- why you don't want chemotherapy?"

They tell you that it would, indeed, be more in line with their religion and ... Bingo -- you have a front page story.

I, in this case, would defer to the legal process and trust the judge and/or jury's decision as long as they've been allowed to weigh the evidence. However, there is that person working for the state who is trying to subvert this part of the legal process. Remember? He or she is trying to get the alternative medicine experts censored. That is enough of a red flag for me to be real wary now of what I read in the papers about this.

Steve,

You do know me well.

:-)

Ed

Post 44

Thursday, May 14 - 3:05am

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Ed elucidated:

You mention how religion damns you (hehe, that's ironic). But what if the religion-talk is a crafted spin? What if two questions were asked, but only one got printed? Here's how you spin a story in order to play on peoples' emotions. Behind the scenes, you ask the parents why they don't want chemotherapy. They tell you they've been talking to some experts who estimate the boy's chances of survival at 85% with alternative therapy.

[...]

I, in this case, would defer to the legal process and trust the judge and/or jury's decision as long as they've been allowed to weigh the evidence. However, there is that person working for the state who is trying to subvert this part of the legal process. Remember? He or she is trying to get the alternative medicine experts censored. That is enough of a red flag for me to be real wary now of what I read in the papers about this.

Fair enough. It would have been helpful if you had clearly stated this in the initial gallery item. Many protests could have been averted in the ensuing discussion. I carefully re-read the second article you linked and see a passage that says, "Healy said she is willing to treat Danny, but would recommend that he receive chemotherapy in addition to her treatment." So even natural healers have sympathy for traditional medicine.

(Edited by Luke Setzer on 5/14, 3:18am)

Post 45

Thursday, May 14 - 5:57am

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But Luke,

I did mention -- in post 0 -- that the state was trying to subvert the legal process by keeping opposing experts out:

"Sinas made a motion asking the judge to bar experts from testifying about alternative healing techniques."

And Helen Healy is a crazy choice for commenting / questioning. A once-orthodox, turned Alterno-Med-Head naturopath, she has a history with the law. Back in '96, secret agents were sent undercover to catch her practicing medicine without a license (and misdiagnosing symptoms of 'kidney stone').

I want to know if she came forth on her own, or if wild-eyed news reporters sought her, specifically, out. Imagine reporters asking Al Capone to comment on someone else's racketeering case. It's crazy. There's a small victory in getting Healy to publicly comment that she would recommend what the Ortho-Med-Heads say: chemotherapy.

Keep in mind that chemotherapy, like energy and food, is a gold-mine where there is a high potential -- some say, an actuality -- of coercive monopolization backed by government force.

Ed

Post 46

Friday, May 15 - 6:32am

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I just heard from a reliable source that this kid and his parents are MLM'ers (Multi-Level Marketeers). Now that's crazy. MLMers often get crazy notions that products they peddle are miracle-cures from everything Asthma to Zoster (herpes zoster, aka "shingles"). This is a new and informative spin on the story. Check this out:

1) there's better reason to interfere with these folks' intentions -- because people in MLM can't think well (they can't understand what's best for themselves)

2) there's a lot riding on this kid's outcome -- i.e., if he beats Hodgkins with MLM products (and goes public about it), there will be a terrible, economic fire-storm; if he dies, there may be lawsuits against the MLM

Ed

Post 47

Friday, May 15 - 6:57am

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See my RoR article "The Grinning Face of Evil" for my views on MLM.

Post 48

Friday, May 15 - 9:44am

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The boy is going to get chemo.

http://www.google.com/hostednews/ap/article/ALeqM5hEYZV56pCa-jEce4SqgGInTCiwGwD986Q82G1

Jordan
(Edited by Jordan on 5/15, 10:55am)

Post 49

Friday, May 15 - 10:04am

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Good.

jt

Post 50

Friday, May 15 - 11:04am

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Jordan beat me to the punch. Of note:
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... �I feel it�s a blow to families,� he said. �It marginalizes the decisions that parents face every day in regard to their children�s medical care. It really affirms the role that big government is better at making our decisions for us.� ...

Child protection workers accused Daniel�s parents of medical neglect; but in court, his mother insisted the boy wouldn�t submit to chemotherapy for religious reasons and she said she wouldn�t comply if the court orders it.

Doctors have said Daniel�s cancer had up to a 90 percent chance of being cured with chemotherapy and radiation. Without those treatments, doctors said his chances of survival are 5 percent. ...
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From:
http://www.msnbc.msn.com/id/30763438

Interesting that the mother said that she will not comply with the law / ruling. Interesting that doctors would go on record as saying that the boy's chances of survival would be 5% without conventional therapy.

Is there a study where we took kids with Hodgkin's and let some of them die in order to calculate the probability of spontaneous remission? I don't think so. On top of that, the kid is not merely hoping for spontaneous remission. But I'm sure that -- when the doctors contrast 90% against 5% -- that the doctors are comparing conventional treatment to no treatment, rather than to alternative treatment. Their 5% number is probably from observations of poor children who couldn't afford to be treated for their Hodgkin's (if even that, rather then just simply their own "gut-feelings" about the chances of survival).

Until more acceptance of the alternative medicine research -- research which has already been done, by the way -- doctors may go on categorizing "alternative care" along with "no care." This case, because it is haggered with religion and MLM, was a "safe" case to put into print (because it can be dismissed so easily as lunatic fringe).

Ed

Post 51

Friday, May 15 - 11:28am

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What about the odds of an adult in the same situation?

Post 52

Friday, May 15 - 1:33pm

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�It marginalizes the decisions that parents face every day in regard to their children�s medical care. It really affirms the role that big government is better at making our decisions for us.�

No way. "Decisions" in this case means using reason to meet parental responsibilities and that was NOT being done. What was marginalized was any claim that parent's can let their kids die because it suits wacky religious beliefs they have adopted.
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"...his mother insisted the boy wouldn�t submit to chemotherapy for religious reasons..."

And if he were to insist that he was Superman and want to jump out of a 10th story window, would she honor that belief?

Post 53

Friday, May 15 - 4:25pm

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Luke,
With what research I've seen on Hodgkin's, survival odds go down with age.

Steve (and other dissenters),

Some of you guys keep harping on like the parents are killing the kid or something. First of all, we're comparing percentages of survival (not absolutes of death vs. life). You may agree that we're not comparing absolutes, but you don't sound like it when you write about it.

Second of all, we're comparing different answers to life's problems, not necessarily the existence -- or the complete lack, thereof -- of rationality. On this note, there is definite controversy over the long-term effects of being treated for Hodgkin's (see below).

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J Clin Oncol. 2003 Sep 15;21(18):3431-9.
Long-term cause-specific mortality of patients treated for Hodgkin's disease.
Aleman BM, van den Belt-Dusebout AW, Klokman WJ, Van't Veer MB, Bartelink H, van Leeuwen FE.
Department of Epidemiology, the Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.

PURPOSE: To assess long-term cause-specific mortality of young Hodgkin's disease (HD) patients.

PATIENTS AND METHODS: The study population consisted of 1,261 patients treated for HD before age 41 between 1965 and 1987. Follow-up was complete until October 2000. For 95% of deaths, the cause was known. Long-term cause-specific mortality was compared with general population rates to assess relative risk (RR) and absolute excess risk (AER) of death.

RESULTS: After a median follow-up of 17.8 years, 534 patients had died (55% of HD). The RR of death from all causes other than HD was 6.8 times that of the general population, and still amounted to 5.1 after more than 30 years. RRs of death resulting from solid tumors (STs) and cardiovascular disease (CVD) were increased overall (RR = 6.6 and 6.3, respectively), but especially in patients treated before age 21 (RR = 14.8 and 13.6, respectively). When these patients grew older, this elevated mortality decreased. The overall AER of death from causes other than HD increased throughout follow-up. Patients receiving salvage chemotherapy had a significantly increased RR of death from STs, compared to patients receiving initial therapy only.

CONCLUSION: The main cause of death among HD patients was lymphoma, but after 20 years, HD mortality was negligible. The RRs and AERs of death from second primary cancers (SCs) and CVDs continued to increase after 10 years. Even more than 30 years after diagnosis, HD patients experienced elevated risk of death from all causes other than HD. Increased risk of death from SCs and CVDs was found especially in patients treated before age 21, but these risks seemed to abate with age.
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From::
http://www.ncbi.nlm.nih.gov/pubmed/12885835

Recap:
After about 18 years, 42% of young folks conventionally-treated for Hodgkin's had died (58% were still alive). 55% of these deaths were from Hodgkin's. Either having Hodgkin's -- or conventionally-treating Hodgkins -- elevates your overall risk of death, even more than 30 years after diagnosis (i.e., even in folks who got the so-called "cure" they were looking for).

Caveat:
Treatment of Hodgkin's (as well as treatment of the side-effects of treating Hodgkin's) has gotten better through time, so survival odds of 58% at 18 years is somewhat better now. Here's a study including recent treatments ...

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Cancer. 2009 Apr 15;115(8):1680-91.
Survival after Hodgkin lymphoma: causes of death and excess mortality in patients treated in 8 consecutive trials.
Favier O, Heutte N, Stamatoullas-Bastard A, Carde P, Van't Veer MB, Aleman BM, Noordijk EM, Thomas J, Ferm� C, Henry-Amar M; European Organization for Research and Treatment of Cancer (EORTC) Lymphoma Group and the Groupe d'Etudes des Lymphomes de l'Adulte (GELA).
Clinical Research Unit, Fran�ois Baclesse Cancer Center, Caen, France.

BACKGROUND: The objective of this study was to analyze cause-specific excess mortality in adult patients with Hodgkin lymphoma (HL) with respect to treatment modality.

METHODS: The study population consisted of 4401 Belgian, Dutch, and French patients aged 15 to 69, in all stages of disease, who were treated between 1964 and 2000. Excess mortality was expressed by using a standardized mortality ratio (SMR) and calculating the absolute excess risk (AER). Relative survival was calculated and analyzed using a previously described regression model.

RESULTS: At a median follow-up of 7.8 years, 725 of 4401 patients (16.5%) had died, 51% of HL, 10% of treatment-related toxicity, 18% of second cancer, 5% of cardiovascular diseases, 2% of infections, 8% of other causes, and 6% of an unspecified cause. Overall, the SMR was 7.4 (95% confidence limits [CL], 6.9-8.0), and the AER was 182.8 (95% CL, 167.7-198.8). These indicators were 3.8 (95% CL, 3.2-4.5) and 27.9, respectively, for deaths from a second cancer and 4.0 (95% CL, 2.3-6.7) and 3.3, respectively for deaths from infection. After 15 years, the observed survival rate was 75%, and the relative survival rate was 80%. In patients with early-stage disease, the overall excess mortality was associated with age > or =40 years (P = .007), men (P < .001), unfavorable prognosis features (P < .001), and 2 treatments: combined nonstandard nonalkylating chemotherapy plus involved-field radiotherapy (P = .002) and mantle-field irradiation alone (P = .003). With follow-up censored at the first recurrence, no treatment modalities were associated with excess mortality.

CONCLUSIONS: Progressive disease remained the primary cause of death in patients with HL in the first decades after treatment. Excess mortality in patients with early-stage disease was linked significantly to treatment modalities that were associated with poor treatment failure-free survival.
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From:
http://www.ncbi.nlm.nih.gov/pubmed/19208428

Recap:
After about 8 years, 16.5% of folks conventionally-treated for Hodgkin's had died (83.5% were still alive). 51% of these deaths were due to Hodgkin's and 10% were due to the conventional treatments for Hodgkin's! After 15 years, 75% were still alive. Overall excess mortality in these folks was associated with 2 treatments:

1) combined nonstandard nonalkylating chemotherapy plus involved field radiation
2) mantle-field irradiation alone

Caveat:
First of all, I don't know what kind of treatment this kid is/was getting. Hopefully, it's not one of the above. Also, when doctors say that you are a cancer survivor or have been "cured" of cancer, they only mean so within 3-5 years after diagnosis. You could be cured and still die in the 6th year (either from your cancer coming back, or even from direct or indirect effects of your conventional treatment!).

All that some doctors care about (e.g., the ones on government payroll) is keeping you alive and cancer-free for 5 years -- because that's what goes down in the books as a "success" or "failure". Your life could be dramatically different or shortened after that, but that's not their problem. Young kids have much more than 5 years to live.

So when doctors in this Minnesota case say that the kid has survival odds of over 90% with conventional treatment, they're only looking at the first 5 years. Actual longer-term survival of this disease -- or the direct or indirect effects of treatment for this disease -- is about 75%.

Ed
(Edited by Ed Thompson on 5/15, 4:28pm)

Post 54

Friday, May 15 - 6:51pm

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Ed,

You said, "So when doctors in this Minnesota case say that the kid has survival odds of over 90% with conventional treatment, they're only looking at the first 5 years."

True, and they were comparing to a 5% survival rate for that period without the treatment!

You said, "Some of you guys keep harping on like the parents are killing the kid or something." Yeah! That is what the difference between 90 and 5 amounts to - the PROBABLE death of their son.

Any judge who ignored numbers like that coming from established medical authorities should be booted off the bench.

Post 55

Friday, May 15 - 8:14pm

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The full text of the judgment is available online. It makes for sad, sobering reading.

Several things are of note:

-- the cancer is a nodular sclerosing Hodkin's lymphoma, Stage IIb, with a mediastinal tumour (a tumour in the area between the lungs) which has rebounded since the cessation of the chemotherapy treatment on Feb 5.

-- the treatment protocol is CCG5942, consisting of 6 cycles of chemotherapy followed by low dose radiotherapy (see here for comparative details).

-- the 'alternative' practitioners who testified offered no evidence of any such alternative treatment efficacy. Every professional consulted by the family concurred in the treatment protocol -- including the three who testified to their beliefs on the benefits of alternative and complementary methods.

-- The judge writes: "Daniel is an extremely polite and pleasant young man. While he is thirteen years of age, Daniel is unable to read. He does not know what the word 'elder' means, although he claims to be one. He knows he is a medicine man under Nemenhah teachings, but is unable to identify how he became a medicine man or what teachings he has to master to become one."

-- the judge writes: "The mother testified that she is currently attempting to 'starve' Daniel's cancer. Methods of 'starving' cancer, according to the mother, include using high pH water to make the body more alkaline, because cancer does not thrive in an alkaline environment. The mother is also treating Daniel with supplements and an organic diet of greens, some proteins and no sugar. The mother testified that she learned about many of these remedies through searching for information on the internet."

-- the judge writes: "Interestingly, Mrs Hauser identified Dr Healy as Daniel's current health care provider. Dr Healy has not examined or even met Daniel Hauser."

Post 56

Saturday, May 16 - 3:32am

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Thank you, WSS, for the most illuminating post in this entire discussion.

Sanction!

Post 57

Saturday, May 16 - 7:06am

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Thank you for posting the link to the full text of the judgment, William.

It provides this thread with a measure of closure. It really does seem like Daniel Hauser has been neglected in some measure, even if unintentionally. However, I do have just a few things to get off of my chest:

-my sister, Kellie, died last year from Hodgkin's lymphoma (with a mediastinal tumor like Daniel has)
-over a concern for my sister, I had met with her doctor (the head of oncology) to talk about complementary or integrative medicine
-the doctor followed up with me by phone but, from what I could tell, did not read (or read well) the packet of information I had created (which I had spent approximately 100 hours on)
-the doctor's opinion was that combining conventional and alternative medicine -- as I had proposed -- would be too dangerous
-Kellie agreed with the doctor's opinion
-Kellie got conventional care only
-Kellie died in less than 10 years

Ed

(Edited by Ed Thompson on 5/16, 7:46am)

Post 58

Saturday, May 16 - 8:48am

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Ed, I'm sorry to hear about your sister. This thread must not have been much fun for you.

Steve

Post 59

Saturday, May 16 - 5:37pm

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Ed, very sorry to hear about Kellie. You must have felt very frustrated with the oncologist, if it appeared that no complementary/alternative treatments would be considered in addition to the standard protocols for your sister's cancer.

I wonder what kinds of alternative therapies the doctor thought would be dangerous. At Minnesota's Children's Hospital (in the Hauser case), complementary treatments are often part of the treatment plan for young patients facing chemotherapy -- this is not uncommon.

For readers still interested in the details of the ongoing Hauser case, see a transcript of Daniel Hauser's appearance in chamber, here. Daniel's fear of and discomfort with chemotherapy are apparent, as is his ignorance of his disease and its course of treatment. If his testimony is correct, all the information about his prognosis came through his mother . . . he was give little information that he understood. Daniel was not able to read the affidavit he had signed -- the document in which he laid out his objections to chemotherapy treatment.

In Daniel's mind, at least, he got better at home after the first round of therapy because of the treatments his mother gave him, in consulation with the folks of Nemenhah -- including Kangen Water and some unspecified vitamins.

Daniel believes that if he resumes chemotherapy he will die.

For a good look at the what Nemenhah peddle through their affiliates, check out their products page -- it's all Nemenhah Certified.

Here's a sample of the crackpot faux-medicine on offer, Enhanced Energy Autoship:

The Spray for the Enhanced Energy System was formulated with the intent of organizing particle and wave phenomena related to information processing. It comes in a 4 oz bottle containing the liquid copals (essential oils) of Rose, Neroli, Roman Chamomile, Frankincense, Ylang Ylang, and Rose Geranium. The Spray works from the outside-in by enhancing the frequency of every cell, healing, bringing balance, and harmony to the body, mind, and spirit. It eliminates blocked personal growth, stimulates and elevates the mind bringing everything into focus at the moment, and creates a sense of well being, peace, and love.

[Edited for grammar]
(Edited by William Scott Scherk on 5/16, 9:57pm)