A tale of two unnecessarily doomed aboriginal girls with leukemia

This is not as is ought to be.

I was tempted to write some joke on the "treatments" proposed by Clement ("life-giving foods", really?), but in regard of the tragedy that happened that's neither the time not place.

I wish that getting a child cured of cancer was as easy and benign as spending some time at a spa resort. Sadly, it's not.

On the previous thread on this topic, a thread at doubtfulnews has been linked to.

Two readers, Colonel Tom and Perry Bulwer, had an interesting exchange, from the point-of-view of two aboriginal people, one agreeing with the Ontario court decision, the other one more conflicted, respectively. The legal background - who has jurisdiction over the children - is complicating the issue.

And both of them aren't very fond of Mr Clement's little enterprise, to say the least.

I think it's time to focus the attention of the skeptical and science-based medicine community squarely on the Hippocrates Health Clinic that promotes itself to First Nations communities as a safe and effective alternative to proven medicine.

There are certainly some of us doing just that. Brian Clement is a menace who needs to be stopped. Why he's been able to practice as long as he has, I have no idea. Florida's regulation of the practice of medicine is as bad as Texas'—worse, perhaps, given that, for example, Stanislaw Burzynski is at least a licensed physician and Brian Clement is not.

As for the thread at Doubtful News, i can understand Colonel Tom's viewpoint to an extent, but I cannot agree with his belief that aboriginal rights trump the right of an 11-year-old child to life, in which Colonel Tom admits that Clement is a quack but nonetheless concludes, "I do not concur with the mother’s and the mother’s clan decision, but I would defend them with what little life and breath I still draw."

These kinds of stories make me very happy to be from Sweden. We have a so-called quackery law that prohibits anyone except actual doctors from treating a list of serious conditions, including cancer and epilepsy. It doesn't stop people from going abroad to seek out quacks like that Florida doctor, but if more countries had laws like that, it would be harder for them to kill children like this. Maybe something to fight for in the US too?

I am not a doctor. But couldn't this littl girl have been treated with imatinib alone rather than combined with chemo? This way the girl would still have had a decent chance. - Unless the parents either class imatinib as chemo or were just anti Western medicine in general.

Fergus, a typical MO of a fair number of the cancer quack clinics is they often pressure people into doing only their program and they must not take anything made by Pharma or prescribed by an MD. So even if the parents were interested in what some people call a best of both worlds type of integrative approach there are clinics that will not participate in that. And if you are conditioned to believe a specific clinic is the one and only hope it can be hard to advocate for doing anything other than what they demand.

Treatment with 'cold lasers' at a fraudulent Florida massage clinic hardly constitutes traditional aboriginal treatment. The only tradition being respected there is that of shady American practitioners to fleece the gullible. What concerns me most is that we have a legal precedent here that will make it more likely that Canadian aboriginal children in this situation will, in effect, be treated as second class citizens. If she had not been aboriginal when she went into that courtroom she would not have been condemned to this death by a judge who possibly cared more for upsetting a legal applecart than for the well-being of the child. I understand chemo isn't pleasant (believe me, I am a physician who is currently receiving chemo for leukemia - it's not fun but it beats the alternative), but to let a child die unnecessarily is unforgivable. To do it simply because she is First Nations is racist. To do both is not something that should happen in my Canada.
This is a disgrace that reflects badly on us. Let down by parents who were unable to act in her best interests and let down by a legal system that respected the fact she was aboriginal more than her right to live. Any other aboriginal child in the same predicament know must know that the court system will not save them from an untimely death, while it would do so if they were of any other race. Justice Ontario - doing their bit for genocide.

Re #6: That has been tried and does not work. Imatinib alone is great for chronic myelogenous leukemia (CML), but lymphoblastic leukemia requires the combination of imatinib plus chemotherapy. Otherwise, the leukemia rapidly relapses.

No one should defend Brian Clement, but to assume that the children's treatment is solely under his multiple cursed hands is way too simplistic. Both the Longhouse child and one that just died are under the care of multiple individuals, Native and EuroCanadian. At least in the case of the daughter of the Longhouse, aka Six Nations, child, her treatment plan includes returning to chemo when and if her cancer returns. Although, while my ears are far from the Canadian Six Nation's homeland, I have heard their hearts are likely now hardened that Makayla Sault has passed from this world. The tale that is told is that she never recovered normal cardiac function after her initial chemo. The evidence based belief among the People is that chemo and in particularly McMaster's Hospital were excessive to the point of being detrimental. I wish an autopsy would be performed, but sans that the truth of the eyes will supersede the truth. There is great sadness in this, as published studies indicate that as a population Native American's have a high higher rate of the various leuks and far worse outcomes even with treatment. Genetic differences can be a bear.

As far as the politics, child's mother and her clan must be given great weight in these decisions. McMaster's Hospital did everything wrong in their interaction with these children and their families. This is sadness.

Tried to discuss this with Mr Woo. Sadly, he immediately fell into true-believer mode, with the same anti-science-based medicine tropes. He asked, "Did she not have the right to choose? Do you really want the government to be able to tell you what you do with your own body?" etc., etc.

I can hear echoes of every conspiracy theorist website he reads and listens to when I attempt to discuss medicine (except vaccines - having normal grandchildren post immunizations after the autistic one has calmed him down on that front), the economy or politics. It would be so much better if I could block every crank website on the internet.

My heart breaks for every parent that loses a child.

Thus, we have an asymmetrical situation, in which the parents and their elders can say whatever they want, and no one with actual knowledge who treated the girl can say much, if anything, in response.

This is an important point, and a big part of why peddlers of cancer woo such as Clement and Burzynski get as much respect as they do. Their fans get to say that the woo treatments are wonderful and the SBM treatments worse than useless for the patients who seek out these alternative treatments. Defenders of SBM are only allowed to talk in general terms, and frequently at a technical level that most laymen don't understand. So the anecdote trumps the data. We hear that the alternative treatment worked for Patient A while the SBM treatment killed Patient B. We don't get to hear the evidence that it was actually the alternative treatment that killed Patient B, and the SBM treatment worked for Patient C, even though there are many more Patients C than A and B.

#9. Thanks I didn't know that.

I’ve explained this concept several times of late. For hematologic malignancies like this, there are several phases of chemotherapy, starting with the induction phase. The induction phase is designed to put the patient rapidly into remission. However, as pediatric oncologists (not to mention adult oncologists who treat hematologic malignancies) learned the hard way decades ago, it requires sustained courses of chemotherapy to prevent leukemias from rapidly recurring. Basically, it’s often easy to get a patient into remission, but keeping the patient in remission is harder.

Here is my favorite figure that helps illustrate this concept. It is from a paper on AML, but the same concept of clonal evolution and minimal residual disease is relevant to ALL and other cancers. The vertical width represents the burden of cancer (i.e. # of viable cancer cells), which can be markedly decreased (to the point of undetectable) without extinguishing every last cell. The only hope is eliminating every last cell with post-remission treatment. If post-remission treatment is eliminated or fails, residual cells cause relapse, and resistant clones predominate as shown in the figure.

This is so sad. And compounding the sadness is the the fact that certain people are not learning anything from this tragedy. The majority of the comments on CBC news are along the lines of "She was a hero and made the right choice" and "Too bad the chemo killed her before "traditional medicine" could save her!". So my takeaway from this is we're going to keep having to watch in frustration while it happens again and again :(

Normally, I would tell this Clement character to shove his alt-med bullshit up his ass. Problem is that he would likely find that enjoyable and 'detoxing'. The following quote is from a CBC article today:

"“The mother of the 11-year-old girl, who cannot be identified because of a publication ban, says the resort’s director, Clement, told her leukemia is “not difficult to treat.”

In an interview with CBC’s Connie Walker, Clement said, “When we educate them they take care of themselves,” he said, before shouting, “You’re a liar. Get off the property.”

In an interview with CBC News, her mother said, “This was not a frivolous decision I made. Before I took her off chemo, I made sure that I had a comprehensive health-care plan that I was very confident that was going to achieve ridding cancer of her body before I left the hospital. This is not something I think may work, this is something I know will work.”"

What a narcissistic jackass who should be sent to prison ASAP. Killing kids in the name of personal gain.

Madison MD, Nice link.

Shows that cancer is primarily due to assimilation of genetic mutations. Also shows how complicated things get as the disease progresses.

Why do people keep carping that the girl was receiving “traditional medicine” when she was clearly seeing the Florida quack? Not that rattles, chanting, herbs, teas, and such would be any more helpful.

Why are the parents not held accountable to Orac? Are they not responsible for their actions? While I am very sorry for their loss and for this entire situation, I do think they share the responsibility for making terrible decisions in the face of massive advice from responsible professionals. There are bigger fish to blame, such as the basic cultural respect given to belief in general, but most parents choose real treatment and those who don’t should bear some responsibility for the outcome in my view. I’m not suggesting punishment such as prison, but as North Korean as it might sound, how about some “re-education”?

Lancelot Gobbo #8

This is a complex case, and you have essential facts wrong.
• The court case did not involve Makayla Sault the child who has now tragically died.
• The Sault family's aboriginal status had nothing to do with Makayla's chemo withdrawal. They are Evangelical Christians, and her father is the pastor of the church.. Makayla's reaction to the chemo was so bad he had to put in the ICU. There she had a vision of Jesus telling her she would be healed. At that point her parents withdrew her — Evangelicals don't mess with Son O' God!
• NO ONE went into Judge Gethin's courtroom. The worst misreporting in this story is that a court decision could have saved 'J.J.' (the 2nd girl). Her family had long since fled and were outside the jurisdiction.
• The entire "aboriginal medicine' issue is a MacGuffin employed by both sides to shield what IS a child custody issue. It was only brought in after the fact of the 2nd chemo refusal, when that case appeared headed for court.
• The extraordinary severity of Makayla's reaction to chemo, combined with family's Evangelicalism would have made saving her a tough nut in any case. However, McMaster Hospital sealed her fate by referring her case to CFS instead of seeking a state mandated treatment plan. CFS refused to intervene and seek custody, which the hospital should have known they would (it's called a telephone), and they DID ot appeal that decision on Makayla's behalf.

You are correct about two things:
1. The case set a very bad precedent, that could endanger the lives of future First Nations children.
2. The tradition being respected is that of shady American practitioners to fleece the gullible. But that is an entirely American problem. Clement has been murdering cancer patients for decades with his scam, yet he is considered an upstanding member of the Florida business community with A+ ratings from the Camber of Commerce and the the Better Business Bureau. The failure of Florida and the U.S. government to regulate quackery, the business communities acceptance of it, and the larger medical profession's tolerance of it are the central issues here. Orac and SfSBM appear to find themselves crying in the wildness about quacks like Clement. EVERY medical doctor in the U.S. and their professional organizations should be taking an activist stance pressuring lawmakers to put Clement and his kind out of business, and in the jails where they belong. That this is not happening is tragic, and to my mind, inexplicable.

Did she not have the right to choose?

You might tell Mr. Woo that as a minor child, no: she actually did not have a right to choose. That right was instead held by her parents/guardians, who have demonstrably made a poor choice--one that rejects a near certainty for success in favor of the near certainty of failure.

Do you really want the government to be able to tell you what you do with your own body?

We're talking about parental responsibilities regarding health care for minor children, however, not government intervention to veto or dictate health care decisions regarding their own care made by competent adults

In that context yes: I absolutely do want our government's public health/child welfare agencies to be to tell parents they do cannot deny their children necessary and essential medical treatment.

"he immediately fell into true-believer mode, with the same anti-science-based medicine tropes. He asked, “Did she not have the right to choose? Do you really want the government to be able to tell you what you do with your own body?” etc., etc."

The core problem of this kind of reasoning is that it only works if you assume that the belief in alternative therapy is reasonable, and that the child is mature enough to have been presented all the evidence and make her own decision.

The parents are making this choice because they 100% believe that their children will live with the alternative therapies but that the chemo will kill her. The children are making this choice because they are not fully developed and are vulnerable to their parent's beliefs.

In both cases though the belief is in an outcome. Not in a religion. In some ways if this was religious it would be clearer because it's possible that a religious person might accept that they could still die but that their religious life is more important.

But this? The child is not making an informed decision about what to do with her own body. She has been lied to about what the results will be of each decision and does not have the maturity to see through the misinformation.

The fact that the parents and the tribes also believe the lies does not change the great moral wrong that is being done to this child. She is not choosing to die. She is choosing to live. And she is being lied to about what the mechanism is that will let her live.

To ask if she has the right to choose what to do with her own body is a red herring. She and her parents claim that the choice is TO LIVE. Both her and her parents have made it crystal clear that they are CHOOSING FOR HER TO LIVE. If it were a different circumstance and everyone involved acknowledged that she had a better chance with the chemo but they wanted to go with traditional medicine for religious reasons… and everyone understood the risks involved… well then you can get into the argument about the "right to choose what to do with your own body". But again… that isn't what's happening here.

Every other moral argument about this case is basically a smokescreen for the fact that this child has been misled and lied to and her choice to NOT end her own life, but to continue to live a full and healthy one is being subsumed by politics, dogma, quackery and ideologies.

Thank you "Sadmar", you certainly seemed to be more aware of "facts" than most. People get confused, there were two girls. While both are First Citizens/Native Americans, they are from very different cultures. As for the child that I am not allowed to name, who is of the Six Nations, it was reported and confirmed by hospital testing that she is currently not showing any signs of remission after six months. She will have opportunity to celebrate one more mid-winter festival.

As for Makayla, all accounts indicate serious and systemic damage from the initial chemo. This has been reported in the literature that people of native american genetics often show similar reaction, it is likely why mortality and poor outcomes is excessive among this subset of the population. The Reservation medical resources and the independent doctors brought in to review her case were in agreement. Now I do not preclude the possibility that she'd survived the chemo, but she was excessively damaged from the initial treatment. I wish there would be an autopsy to settle this, but as it is we'll have to rely upon the observation of the doctors that treated her and the idle speculation of the experts that have never stepped foot into the same room as Makayla .

@ Dorothy #20
The bigger fish to blame is the cultural/legal 'respect' given to that parents 'own' their children, and should have the power to make life and death decisions for them. See the RI item on the case of Cassandra C. in Connecticut. Orac has consistently questioned this ideology. IMHO, his reluctance to be too harsh on some individual parents (not all) is appropriate in that they are caught up in these much larger ideological conflicts at a time of great stress facing the possible death of their kids on one hand, or possibly severe suffering from treatment (as Makayla experienced), making them all too vulnerable to the persuasions of quacks like Clement who shouldn't be in business in the first place.

I don't know if you or anyone in your family have ever been conned. My Mom was very susceptible to (non-medical) con-artists. These people are professional criminals (often legally sanctioned) highly skilled in detecting personal weaknesses and exploiting them. In short, their responsibility IS limited — if you don't know what you don't know you can't magically come to the position where you go look for the other side of the choice in question.

Again, this issue is wrapped within the larger concept of "parents' rights". If Ken Sault had cancer, and been seduced by Clement, to fault him for his own death would be blaming the victim. He is still a victim in that he has lost his daughter. To blame him personally for Makayla's death, he would have to live in a society that values children as autonomous individuals, with rights their parents cannot supercede — what right-wingers would object to as a literal 'nanny state.' Since the social situation is quite the opposite, it's problematic to blame Makayla's parents for falling prey to one of the most polished and successful medical con-artists on the planet.

It's also hard to fault the Saults personally for the role their Evangelical religious faith played in Makayla's death. It's easy to say, 'well, religion is stupid, and no one should impose that in a way that risks the life of a child'. But, again that's not the way our society, our culture, and our laws work.

'J.J.' the still-living First Nations girl being giving the Clement treatment is immature, passive, very dependent on her mother, apparently expresses no manifest will of her own. Makayla was the opposite: bright and expressive of her own will. As much as any child of 10 could be, she was a true believer in her Christian faith. In the ICU with severe side-effects from the chemo, she had a vision of Christ telling her she would die there, but that if she left, He would heal her. She begged her parents to take her home. They chose not to argue with Jesus. It's a little much to blame individuals for adherence to socially accepted beliefs when the driving expression of that belief comes from the child. (This was one of the reasons CFS refused to intervene with Makayla's custody.)

I'm not suggesting parents are absolved from responsibility sui generis. (Again see comments in the Cassandra thread.) It's just not a black and white thing where we can necessarily isolate the individual parents from the broader social context.

J.J.'s mother, on the other hand, may well be a controlling loon who is acting outside social norms, but the court has sealed the details, so we really don't know.

@ Lumen #25

Please take care to be explicit about whether you are discussing Makayla or 'J.J.'. and to avoid conflating the two cases. They are far more different than they are similar, as, among other reasons, most of the parties involved in J.J.'s case had Makayla's case as a precedent.

Orac, I obtained my M.S. in Biomedical Engineering from University of Houston and did my post grad at UCLA Medical School. After graduation I fell into the unsavory and immoral field of epidemiology and insurance, until such time as the blood of my actions drove me to retreat. Thus my vocabulary uses some terms that are neither mainstream medical. When I say "Evidence based belief" I mean it is a direct observation made by individuals. Her family, church, nation saw a child brought to the brink of death, with uncontrolled tachycardia and hypertension. Her BUN levels were spiking, there was talk of dialysis. People saw a person of death's door. They also experienced a hospital system that, mildly, committed every sin in the world with respect to patient interactions. Yes, WE BOTH know the lack of value in individual observations, but I certainly know that it is hard to get an individual to not believe in their own experience.

I don't know the details of her particular family and kin, but most N.A's in that part of Canada have experience with someone in their extended family being ripped from the home, sent to quasi-government "schools". You cry for one child that died because of poor medical care? Were the hell were you when thousands were dying in the "schools". When the NDN was being beaten and starved out of them ,when they died because vaccines were not given to them, then experimentation was performed on them. Where was all this white ass concern for the little red children then?

Yes, I know you're likely too young to have been alive in those times, but it is your culture, your heritage, the medical traditions that you claim now that were in place then. You want the NDN's to believe that you can and will save their children?

Sadmar, "J.J"'s treatment and well being are not at the sole whim of her mother. Her Mother's clan will have more control over behavior than just her individual parent. In some ways, this is likely root of more of the problem, as her elders likely are of the generation that experienced "The Schools". There is little trust of that bunch and EuroCanadian authority. I myself am not Canadian and am actually banned from Canada.

Colonel Tom #29 wrote:

You cry for one child that died because of poor medical care? Were the hell were you when thousands were dying in the “schools”.

Are you really going to make this sort of argument? The ante can always be upped.

In the ICU with severe side-effects from the chemo, she had a vision of Christ telling her she would die there, but that if she left, He would heal her.

Odd that her own summary was "Jesus came into my room and he told me not to be afraid, so if I live or if I die I am not afraid. Oh, the biggest part is that Jesus told me that I am healed so it doesn’t matter what anybody says."

"Stanislaw Burzynski is at least a licensed physician ... "

And even some of the doctors in the Clinic have licenses! LOL.

This article has a very mild association with SickKids hospital. They are simply the lab that samples were tested at, as far as I can tell. Isn't there a picture of the Hippocrates Health Clinic you could have used?

@ Colonel Tom #26

As for Makayla, all accounts indicate serious and systemic damage from the initial chemo.

I am not in medicine. Are you suggesting the alleged cardiac dysfuntion Makayla suffered would have been permanent, and impaired her life even had she completed the chemo and survived? What kind of cardiac function are we talking about here?

This has been reported in the literature that people of native american genetics often show similar reaction, it is likely why mortality and poor outcomes is excessive among this subset of the population.

Do you have references/citations for this literature?

The Reservation medical resources and the independent doctors brought in to review her case were in agreement.

What were the qualifications of the independent doctors? More importantly, when during the timeline did these reviews occur? To whom were the findings submitted and when?

This does seem to complicate things a little, but not much. If anything, it might have led McMaster to overstate the prospects for Makayla's survival and recovery with chemo. However, I can't it imagine it would make any alternative therapy the slightest bit more credible. Zero is still zero. As a question of medical science and/or abstract moral judgment we can take the alt-med out of the equation and pose some thing like the claim in the Cassndra C. case — quantity of life vs. quality of life, and weigh any long term health effects of the chemo Makayala may have faced against the very slim chance of survival she had without it.

So, again we must not conflate the two cases. Perhaps all the relevant information is sealed, but we certainly wonder: what sort of side effects did 'J.J.' experience during her stay in chemo? Was she diagnosed by anyone as facing long-term consequences. If so by who and when? Again, what sort of practitioner is the EuroCanadian "individual" who is Participating in J.J.'s care? If this is the same indiviidual who looked after Makayla, that's hardly promising.

it was reported and confirmed by hospital testing that she is currently not showing any signs of remission after six months. She will have opportunity to celebrate one more mid-winter festival.

I ma confused. Did you mean 'recurrance' rather than 'remission'? I.e is she seemingly healthy know and will celebrate at least one more festival? 'Not showing remission' would mean the cancer is still present and active, wasn't significantly affected by the short course of chemo at all, and thus she'll likely see ONLY one more festival? Please clarify. (I'm assuming you meant recurrance, since you noted "her treatment plan includes returning to chemo when and if her cancer returns".)

If she does seem to be healthy at the moment, I can only note that Makayla was reported to be in exactly the same condition after receiving Clement's treatment. The sbm folk said this was undoubtedy the delayed effect of the chemo, bolstered by the removal of the side-effects (as discussed above). Kid feels all better! But Is still essentially the walking dead. This does not bode well for J.J.

Finally Colonel T., if you have time could you review my comments from the (long) earlier thread here and note anything i may have gotten wrong?
http://tinyurl.com/o6xqbzh
As you'll see, I was contining to dig into a much information as I could find on the web, and each new bit of info beyond the standard news frame led to re-evaluations and new conclusions, so I know I was off on some things at the beginning, and seeking more any informed insider comment on where I wound up...

Narad #32
You are, of course, correct. I had mis-remembered and mis-stated. So I should have said "Jesus told her she was healed, thus making it OK for her to leave chemo." A bit of a nit-pick, but i grant it matters.

a hospital system that, mildly, committed every sin in the world

Typical Canadians.

You cry for one child that died because of poor medical care?

Actually, the sorrow is prompted by a child dying because they were ydenied available good medical treatments and instead were given something other than medical care (poor or otherwise).

And yes; one can both feel remorse for things our nation may have done in the past while still feeling both sorrow and anger at the unnecessary death of a child.

@ Sastra #31

COLONEL TOM:
You cry for one child that died because of poor medical care? Were the hell were you when thousands were dying in the “schools”.

SASTRA:
Are you really going to make this sort of argument? The ante can always be upped.

Sastra, I think you may have taken the Colonel's "you" to refer to Orac, or sbm advocates, when it seems to me to refer to the dominant culture in general. RI's coverage of this story is but a drop i the media bucket. This is Big News in Canada, and indeed the dominant narrative behind the news frame is paternalistic and frankly racist (in the sociological sense, not the conscious bigotry sense): Yes, now mainstream Canadian society cries for health of Native Children — to justify a hospital's attempt to have them removed from their family and culture, and made wards of the State, just like the "schools". And the hospital went directly to the custody issue — an agency with no competence to evaluate medical claims — circumventing the process that could have quickly resulted in a mandated treatment plan for Makayla.

So, yeah, it's not Orac's job to cry for injustices done in some other country before his time. His job is to comment on this case as a medical expert admitting that as a white American, he's an outsider and his perspective is limited. What Colonel Tom is saying is that the broader media attention being given to this case evidences a noxious stench of hypocrisy. It does.

Orac does the medical science. There's a lot more to this case than medical science, a WHOLE lot. Orac seems to kind of get that, but can't really credit it properly because he's an oncologist, not a Candian social historian. If you want a COMPLETE picture of this story — if you want to assess anyone's motives, or how well-informed their actions may have been, or how they interpreted actions by other parties, some background on the Schools is 100% essential.

Are you really going to threaten to up the ante on a Native American? Good luck with that...
___________
Free Leonard Peltier

I don’t know the details of her particular family and kin

But you know her lab results?

Her BUN levels were spiking, there was talk of dialysis.

BTW, what was with the curvature of the spine?

They are far more different than they are similar, as, among other reasons, most of the parties involved in J.J.’s case had Makayla’s case as a precedent.

Actually, I find them very similar in many ways. Same cancer. Similar time frame in rejecting chemotherapy. Same quack. Eerie similarities. The main difference is the legal case for JJ.

Also, see my comments above. I took advantage of the back end of WordPress to put my comments directly after the person to whom I was replying.

Colonel Tom:

When I say “Evidence based belief” I mean it is a direct observation made by individuals.

The term for that would be "anecdote".

Sometimes I think I am speaking a different language.

Narad, knowing local medicinal people, actually knowing relatives of my dead first wife (leuk complication thereof, age 19), is different than knowing every single family on another reservation. There is also the published reports in the local paper. There is also the very simple fact that people of the longhouse do not lie, ever.

Orac, Learn a little empathy, if you don't understand your patients how are you expected to heal them? These are people whom know the Canadian system has betrayed them in the past, that is betraying them in the present and then you expect them to somehow make an irrational leap of faith and go "Aiyee, well I am sure this bunch of EuroCanadians have only my best interest in heart". Look, just because Wiley E. Coyote fell for that running through a dust cloud until he realized that there was no ground beneath his feet every single time, don't expect the NDNs to be as gullible. You want to save children, then you must earn their trust.
I will shed tears that your heart is so heart not to understand.

Sadmar, thank you for understanding. Had my voice had any weight in the matter I would have had had those children going through the chemo protocol, not at McMasters but somewhere that would have had some sense. Yet, my voice did not. I am not their nation, not even their clan.

P.S. Just as almost a humorous aside the daughter of my wife, aka "my daughter" returned to school after being out for the last two weeks. A mysterious illness, at age 13 (or she will be on the 22nd), she lost appetite, nausea, will to eat. She lost 10 lbs in a week. When she went to ped last week, the doctor scratched her head scarf and asked all the "emotional" questions and then all the test you'd expect. When my mind heard her mention the white cell diff, Like a dagger to my own heart failure heart. While we do not know what is wrong with her, at least it is not leuk, nor mono, nor infection.

I am saddened by this poor child's death, not least because I am the parent of a similarly aged girl. My daughter's close friend is currently being treated for Rhabdomyosarcoma, which was originally staged at 4, but the current information is that due to aggressive chemo and radiotherapy the disease is retreating, and she may be one of those who can survive. Luckily her mother is a nurse, and she ensures that all real treatment is followed to the letter without falling into the hands of charlatans and snake-oil salesmen. I wish that all children were so fortunate, particularly those who have cancers which are far more survivable than my daughter's friend.

Calli Arcale

No, not "anecdote". My post grad research was a combination of information theory and how it relates to the biological side of the brain. Think more of a conditioned response. We accept our experience, even if our experience leads us away from reality. Take a person, given them a bowl of nuts to eat, and then deliver an electrical shock when they reach for a nut. Then explain to them that you've disconnected the wires, that the situation is perfectly safe. Then ask them to reach for another nut. There will be a delay over a person that was not shocked.

sadmar #23

"The tradition being respected is that of shady American practitioners to fleece the gullible. But that is an entirely American problem."

Um. Not quite.

Kelowna Naturopathic Clinic (http://natural-medicine.ca/about/clinic-profile/)

Richmond Alternative Medical Clinic (http://www.drmartinkwok.com/english/treatments.php)

Centre for Natural Medicine (http://www.naturalmedicine.mb.ca/treatment-services/index.cfm)

Heaven Sent Clinic (http://www.heavenscent.ca/clinic.htm)

Boucher Institute of Naturopathic Medicine (http://www.binm.org/naturopathic-medical-clinic/therapies-and-services)

Lifecare Acupuncture and Natural Medicine Clinics (http://www.acupuncturens.ca/services-and-therapies)

Quackery is NOT an "American problem". Unfortunately, it can be found from "... sea to shining sea ..." in Canada, as well.

Not to mention Europe, Asia, Australia, South America, and Africa. Hell, for all I know maybe it can be found in Antarctica as well.

Agreed Selena Wolf, I have never understood why they had the extra expense of going to Florida, when there are plenty of quacks locally. Would have been much cheaper.

Sadmar, while I have limited time in my medically induced semi-retirement, I will need some time to review what you've written. I did have some of the articles bookmarked.

The first one mentions the higher rate of terminal event in Native American children.

http://www.medscape.com/viewarticle/737273
http://www.ncbi.nlm.nih.gov/pubmed/21297632

A far older reference, which may or may not have been superseded

http://www.ncbi.nlm.nih.gov/pubmed/14559954

Unfortunately, based upon my own personal experience I don't know of anyone that has survived more than five years. Given a sample size of seven, at least my imperfect memory remembers seven in the last 20 years, that's 0 survivors with treatment out of 7. Two died during treatment. Not great statistical worth in that sample size.

@ Orac #43

Makayla:
a. Bright, apparent independent ego
b. Evangelical Christianity
c. Severe chemo complications —> ICU
d. McMaster petition possibly excusable mistake
e. Native 'medicine' issue not central to the case, offered as post facto excuse by Brandt.
f. McMaster likely had no idea the Sault's would take Makayla to Brian Clement.
g. McMaster did NOT appeal the Brandt FACS decision.

J.J.
Makayla:
a. Passive, highly dependent on mother
b. No strongly expressed religious beliefs
c. No known complications from chemo
d. McMaster petitioned FACS knowing they would not intervene, and in the wake of commentary on the Sault case that criticized them for not seeking a mandated treatment plan for Makayla.
f. At the time of the appeal, McMaster knew J.J. was receiving the same not-traditional treatment as Makayla, yet failed to cite that in their application to the court.
g. McMaster's appeal of the FACS decision cites the 'native medicine' issue, despite the fact it was irrelevant to the custody case. This opened the door for the Judge's ruling.
h. At the time of the appeal, McMaster knew J.J. had fled to Florida, and the court's decision would NOT in fact, save her life.

Now, I am in no position to read the minds of anyone at McMaster, but I can sure see what their actions look like. And they look like exactly the precedent for kidnapping the bands claimed them to be. Having gone through the routine with Makayla, seeing that her imminent death would be the result, why would they take the same path with J.J? They had been reminded publicly about the option to seek a treatment plan order. They knew Brandt would not step in and seize a First Nations child by force. There is no excuse for them NOT to have known that filing for a custody action by FACS would result in a long legal battle that would likely be decided too late to save J.J. With J.J. and family fled, the ONLY reason thay had to file an appeal was to set a precedent for forcing FACS to act at a hospitals demand in future cases, short-circuiting the function of the Treatment Plan board. And the only reason to cite 'native medicine' in the appeal is to set precedent that undermines the autonomy of the bands in general. (The custody case is simply: she will die without chemo, her parents have withdrawn her, and addition to being a minor child, she evidences no clear will of her own. To enhance that claim with reference to any alternative treatment chosen, clearly that should have been depicted as the new-age Florida All-American quackery it is).

I’ve found that in cases in which there is a conflict with the family, the hospital, despite bending over backwards to do the right thing and treat the parents with respect, is always painted the bad guy no matter what.

That's certainly seems to be true, and fwiw I took a much more hard-line position regarding the intervention in Cassnadra's C.'s case than you did, and defended the hospital's action on moral and ethical grounds, not just legal responsibility. Quite late to the party on the Hershberger case, I have also defended the intervention, in part because the Hershbergers clearly strike me as loons, their Amish heritiage having little or nothing to do with their actions, which, in fact, are contrary in many ways to Amish principles, including the nature of the quack they chose to seek 'alternative' care from before fleeing the country.

When this controversy first appeared here in RI, I too was willing to give McMaster every benefit of the doubt. I assumed they were indeed bending over backward at every point, trying to get J.J. back into proper care. But when I dug behind the headlines into the background facts, something began to stink. The deeper I dug, the worse the stench became.

The problem with a 'boy who cried wolf' analogy here is that the 'boys' are in very different meadows, each cry is from a separate 'boy' and from a distance we don't know what reasons the 'boy' may have for sounding a false alarm, or having good cause to believe the alarm is warranted.

The Ohio Amish are not an oppressed group, and the Hershbergers are very much outliers. The larger issue around their case — having been taken up by Reason and other anti-government cranks — is individual parent's right to do whatever they damn want with their kids. It's f-you Obama and your socialist nanny state. It's irrational, and ahistorical.

Not so with the situation in Canada. McMaster's actions cannot be extracted from the politics surrounding the First Nations. Specifically, The Six Nations band is the subject of a ugly hate campaign mounted by right-wing extremists in the surrounding areas of Ontario. A blog post from one such conspiracy theorist was referenced here on RI by a couple commenters as coming from a 'First Nations Health Worker' going by the nym DeYo. DeYo is neither a health worker, nor a member of the First Nations. These medical cases are occuring in the midst of right-wing authoritarianism asserting power of a community that is supposed to be autonomous under the country's Constitution.

It's a long way from 'Publicized cries of wolf against hospitals are almost always false," to "No hospitals ever act act like wolves."

We do not know whether McMaster treated the Saults with respect personally. We do not know whether McMaster treated J.J.'s parents with respect personally. We do not know whether J.J.'s parents earned personal respect from the McMaster staff. However we can say definitively that McMaster's action showed no respect for the political conditions of the Six Nations band, and no respect for the practical conditions under which J.J. might have been brought back into treatment.

In light of what had already happened with Makayla, the ONLY practical chance McMaster had with J.J. was to file for a treatment mandate — which, under the conditions, they almost surely would have been granted. Had J.J.'s parents refused to comply, that would have put the onus on them, and kept the issue framed by medical effectiveness, not Native Rights.

McMaster didn't do that. They demanded the right to force the state to kidnap First Nations children on their medical say-so without proper review or oversight. They are the wolf.

Orac, I said within the last 20 years in my previous post, but upon discussion with a couple of The Women they corrected my memory. Within the last 15 years I have known 6 souls that have died before their 18th birthday of Leuk, two during treatment. The seventh, Ricky, took the sidearm method out of this world after obtaining the results from his 12th month follow up. Ricky was a good friend. He ran a tube of water so the blood wouldn't stain the floor. I do not know exactly what their genetics were nor can I confirm what type of "leuk" they died from. As I said, too small of a sample size to be meaningful.

I never counted my own first wife as that was almost 40 years ago, although technically she did not die of her disease either. At the end, she was shallow and gray, sunken eyes with just a few tatters of her beautiful hair, her unborn a unnatural distention upon a skeletal body.

The historical mistreatment of aboriginals by the government likely played a role in these children's parents and community distrusting conventional medicine.
But if so, to me that just makes the actions of these charlatans in Florida even more reprehensible, not just exploiting the suffering of a cancer patient and her family, but the historical suffering of her whole nation.

@ Selena Wolf #49

Um, not quite on the "Um. Not quite."

Quackery is NOT an “American problem”. Unfortunately, it can be found from “… sea to shining sea …” in Canada, as well.

I have no doubt.

"The only tradition being respected there is that of shady American practitioners to fleece the gullible." is a quote from Lancelot Gobbo #8. He was referring to the death of Makayla Sault. Her family turned to Brain Clement of the Hippocrates Health Institute in West Palm FL for treatment. Makayla is just the latest victim of many cancer patients Clement has taken for all their money, then thrown out to die as his promises of cure w/o conventional treatment evoporate. The fact that HE is allowed to continue his extremely profitable scam, AND present himself as an upstanding member of the Palm Beach business community IS an American problem.

The discussion was about Clement and the death of Makayla Sault. It was not about quackery in general. IIRC, Canada has it's own cancer quacks. I doubt any of them have a body count equal to Clement, as he probably tops that leaderboard. But who's counting? Dead is dead.

You provided 6 links to quack practices. Only 3 of them mention cancer treatment on their websites, and none appear to specialize in it. These 3 do offer some pretty sketchy therapies in addition to their over-reaching claims. In short, they look dangerous. The other 3 appear to be doing your basic placebos, hand-waving, and diet treatment of chronic conditions, practices extremely unlikely to cause anyone to die by forgoing conventional medical treatment.

Any implicit comparison between a run-of-the-mill acupuncturist and Brian Clement is like comparing the 'terrorists' who put the white flags on the Brooklyn Bridge to Timothy McVeigh.

As for the Centre for Natural Medicine in Winnipeg, the Kelowna Naturopathic Clinic, and the Life Care Acupuncture & Natural Medicine Clinics in the Maritimes (which seem to be primarily in the fertitlity rite business) I can gain no insight into what treatments they actually promote and to whom from their websites, so I have no clue whether or not they have caused anyone serious harm by leading them away from conventional treatment for any sort of dangerous progressive disease. So unless you have at least one documented corpse, you belittle the horror of Makayla Sault's death with your absurd false equivalencies.

I have said REPEATEDLY that the greatest overall public health danger in quackery comes from Naturopathy, as it has the best chance for achieving an unwarranted legitimacy in the political sphere. If you want to smite the Naturopaths, you go girl! I'm behind you 100%. But you have essentially Godwinized your case by trying to liken them to a state sanctioned mass murderer, and that will not help your case one tiny bit.

Neither, BTW, will dropping a smart-ass 'Um,' when you haven't read the fricking post enough to pick enough the obvious context win you friends and allies. Which you need, because in case you haven't noticed, the Natuopaths are organized, funded, and play in the PR rink with the big boys, while your game is sitting on the bench in the Pee Wee league.

Um, not quite on the “Um. Not quite.”

Could you remind me of the thread in which you decided to deliver a lecture about the Amish?

So how many medical doctors from the First Nations were consulted? I know they exist, because I have met a couple. Not uncommon when you live close to the Pacific Coast near the USA/Canadian border.

In fact one of the stars of Sherman Alexie's Smoke Signals is a medical doctor.

There are even programs, or at least one, that encourage native peoples to become doctors. Surely there are some in Ontario.

An article on the primary author of the second link in my previous comment: Walt Hollow, MD.

So how many medical doctors from the First Nations were consulted?

Plural!

"Your link talks about painful treatment, dismissing the findings of NDN doctors that she has permanent damage from the chemo."

Are you really going to threaten to up the ante on a Native American? Good luck with that…
___________
Free Leonard Peltier

Hey, that would make for a really insipid T-shirt.

Narad, I see no reference to to real medical doctors in this link. Please be more specific.

Which First Nations doctors with actual medical degrees weighed in on the treatment decisions? Colonel Tom do you have that information? How many First Nations medical doctors thought that the totally unqualified loon in Florida offered a solution?

No more idiotic jokes, give us real answers.

But if so, to me that just makes the actions of these charlatans in Florida even more reprehensible, not just exploiting the suffering of a cancer patient and her family, but the historical suffering of her whole nation.

Indeed. One can't help but note that the way JJ found out about Brian Clement is through his traveling around the Six Nations and actually recruiting patients from the indigenous peoples. For example, Makayla's family went to a talk by Clement in May. They were taken in, and developed total faith in Clement as the one who can save Makayla. Similarly, JJ's mother heard about Clement through a friend of the family, likely thanks to his having given talks around her community.

Indigenous people are being specifically targeted by a white quack con man from Florida. One girl is already dead as a result. The second girl will almost certainly die unless her parents reverse their ill-advised course and will definitely relapse if they don't reverse course soon. The best outcome we can likely hope for for Makayla right now is for her to relapse, her parents to take her back for chemotherapy, and for her to respond, although the odds of her responding will be much lower than they would have been if the parents had just continued the chemotherapy as planned.

AND THE NEWS READ "ABORIGINAL GIRL DIES AFTER REFUSING CHEMOTHERAPY'. IN FACT SHE HAD CHEMOTHERAPY WHICH DAMAGED HER HEART AND KIDNEYS......THIS IS WHAT SHE DIED FROM.

Do not shout, Louie. And read up on well-known CNS complications of leukemia.

https://www.seattlecca.org/client/Chamberlain_leukemia.pdf

Nice summary.

As I pointed out over on the Doubtful News thread, hypertension sufficient to cause a stroke is rare in a child. Intracranial hemorrhage due to leukemia is a common terminal event. Similarly, an ischemic stroke can occur due to (1) leukostasis, with high white blood cell counts (as can be caused by acute lymphocytic leukemia) causing sludging in the blood vessels of the brain or, less commonly, (2) a red blood cell count so low that it causes lack of oxygen to the brain. It's thus far more likely that Makayla died of end stage leukemia and that her stroke was just the terminal event than it is that chemotherapy-related complications from many months ago resulted in her stroke. I have no doubt that Makayla's family and people believe that the chemotherapy caused her stroke, but the likelihood that it did compared to the likelihood that progressive leukemia caused her stroke is infinitesimally small. From a medical and oncologic standpoint, it's just not a convincing story, as much as they believe it.

Colonel Tom:

No, not “anecdote”. My post grad research was a combination of information theory and how it relates to the biological side of the brain

Yes, anecdote. An anecdote, in this context,means a recounting of a singular event. By itself, it doesn't rise to the standard of evidence because you have nothing to judge it against. You need many observations, systematically obtained so that they can be compared directly, before you can really draw a conclusion.

For instance, I get migraines. I tried having a glass of wine to relieve muscle tension, and lo and behold, the headache went away! Is that evidence that wine treats migraines?

Well, probably not; the prior plausibility is low since there is evidence alcohol is a common *trigger* for migraines. That is, just going by the body of knowledge on the subject, you would expect it to make the migraine worse, not better. Yet my migraine got better! Am I an outlier?

Well, unfortunately, no. I tried it several more times, and was able to determine that wine does not make my headache better -- on average, there is no improvement, and on several occasions it got worse. It's just that sometimes my migraines only last a day; I'd had that glass of wine when my migraine was already resolving on its own. The wine had nothing to do with it.

That's the difference between anecdotal evidence and scientific evidence. The former is impossible to judge; the latter can give you valuable insights. You will not impress people here if you do not appreciate that distinction.

Now, anecdotes are absolutely useful. They can be hypothesis-generating (for instance, the use of sildenafil for impotence started from the anecdotal reports of users in the trial phase that it had an unexpected but much appreciated side effect). And then there's what I think is the more important value of anecdote: they give you a reason to care. They humanize the people and the situations they find themselves in. Anecdotes can inspire in many ways, and that makes them enormously valuable. It's still important, though, to be aware of their limitations, lest we lead ourselves astray.

@sadmar #53

"Not so with the situation in Canada. McMaster’s actions cannot be extracted from the politics surrounding the First Nations."

Whoa!!! McMaster's actions were based on the child's right to proper medical treatment, as well as issues surrounding whether- or not she was making an informed decision. It was the Six Nations and Makayla's family that turned it into a political-cultural issue, hence muddying the waters and turning the entire issue into something it was not.

Calli Arcale, you are missing the point that I am trying to make. Individuals make decisions not based upon a rational weighing of all available evidence. My never completed Ph.D research had more to do with looking at an aspect of conditioned response, where the weight of an actual experience overwhelms "rational" thought. You can call it anecdotal if you want, but then you are lumping it into the greater category of second hand story and obscure example. I'm talking about you, I and the Pope, give more weight in our decision making process from personal experience that we do to statistical analysis.

I'm not sure you are understanding that I am saying that this personal evidence based experience is DETRIMENTAL.

To further expand, with your wine drinking example. Now you appear to be a person of intelligence and understand the detrimental impacts and you will cease the behaviour. Yet, most people don't have your medical knowledge, and say John Q drinks a glass of wine, feels better. This behavior and response is repeated . There will come a point where John Q drinks every time he gets a headache, even if the wine no longer helps, even if the wine is actually detrimental.

You are looking at the concept of anecdotal from a policy/science based over-view perspective. I was looking at the concept of a class of a condition response that leads to poor decision making. Your perspective is completely valid in looking at a drug trial or FDA approval, mine is needed when looking at understanding the behaviour of an individual.

This is point that I am trying to make, the poor behavior of McMaster's Children hospital created an event that has lead not just to a negative outcome in this case, but an example that will be alive and active in the minds of thousands of First Citizens every time they make a decision about the care and treatment of their own children. They saw with their own eyes the treatment of Makayla and Jada at the hands of "wolves" . They saw their beliefs, their heritage, their own health care professionals insults, demeaned. They then saw their attempts at compromise treated like piles of brown. They have nothing but a negative experience, the outcomes of that one act will poison the community for a generation.

Now, the question becomes what do we do to change human nature away from its over reliance upon personal experience. That is the hard path.

Selena Wolf, if McMaster's had contacted the U.S. Marines to go onto Canadian soil to bring in a Canadian citizen for forced treatment, would you still feel the same?

What if, a bunch of Saskatchewan police flew into Montreal and attempted to extract a patient?

Either Canada has a rule of law or it does not. You can not just stop following treaties because you "donna wanna, its tooo hard".

"That’s why we need science." Then Orac, why do you ignore the science that shows that personal experience and observation has a greater influence upon behavior than abstract statistical measure.

It is a completely irrational and unscientific viewpoint to expect a wondrous miracle to pop into existence to change human behavior.

Jumpin' Jesus on a pogo stick! That's a fine straw man ya built there!

If you read this blog regularly (I know, you don't and that's OK given that you've just discovered it, but I'm just saying that if you did), you would realize that one of its main messages is that anecdotes mislead people into doing irrational things with respect to medicine. I long ago lost track of how many posts I've written looking at examples of just that phenomenon and then using such examples to try to teach my readers how to avoid such traps. Such irrationality that's baked into human nature explains much about the antivaccine movement, cancer quackery, and very bad decisions like the ones Makayla and her parents (not to mention JJ's mother) made. I mean, seriously. I've spent a decade illustrating such things right here on this very blog.

If you read my comments after this post, you would also not find anywhere me saying that I'm expecting that people will overnight value science over personal anecdote. What I am saying is that you do not understand what is and is not an anecdote, nor do you understand what they are good for in science-based medicine (not a lot most of the time). You keep coming across to me as completely misunderstanding what an anecdote even is, based on your response to Calli, which mischaracterized what she was doing in her comment. If you go back up a ways, you'll see that I wrote a rather long comment explaining how human memories are fallible, how people automatically misinterpret questioning their anecdotes as accusations of lying (something you, in fact, did when you said that the "people of the long house do not lie"), and why anecdotes can mislead.

Selena Wolf, if McMaster’s had contacted the U.S. Marines to go onto Canadian soil to bring in a Canadian citizen for forced treatment, would you still feel the same?

Highly illegal...but I bet we could pull it off.

Shay, I am sure they could. I had the honour of doing more than a few joint trainings with the J-heads, and they would find a way.

Orac, you believe yourself superior in knowledge and ability, you fail to understand. I will use a simpler example just for you.

There is nothing dangerous about a mutton barbecue. No reason for a rational mind to react badly when going into the wrong western Kentucky joint and smelling good Owensboro barbecue. However, a "lost soul"/wounded warrior that I see went full ballistic recently because of that smell, when we went to get him he was holed up in a gas station restroom repeatedly and washing his hand, his skin shredded and bleeding.

He had been a good soldier. On of the members of his unit, who as he put it was a GD N.York Jew Sodomite, had pushed him away to take the full brunt of an IED. The last meal they'd eaten had been some local goat/mutton Afgani dish, as he awaited the medic he tried to push the intestines back in, the smell of his last mutton meal commingled with blood and crap.

So, call this a strawman if you like, but please go to hospital and tell that Sgt that he is just being irrational and does not understand that it was an anecdotal event that causes him to awaken at night in scream,sweat and piss.

While that is an extreme example, the principle is basic. I, and others, separate the conditioned response behavior of personal experience from anecdotal technique of rhetoric.

I am really trying to simply this.

A global warming denialsit will say that global warming can not be happening because today is warm.

A quack doctor will say, look these two kids died during chemo, so chemo is bad.

A person with evidence based biases will say "I don't eat mutton because I associate it with death"

Captain Tom:

I’m not sure you are understanding that I am saying that this personal evidence based experience is DETRIMENTAL.

You are correct -- I did not get that impression from what you posted. I had the impression you were elevating the stature of this type of evidence. I get what you're saying now. I don't really agree with your very gracious description of me as a very intelligent person thus being less vulnerable to error in this regard, though. While lovely and appreciated, I know it's not my layperson's knowledge of medicine that protects me, nor my intellect. It's critical thinking that does it -- questioning my own conclusions. Going along with what you said, questioning one's own conclusions goes against instinct, and so I do not always remember to do it. Probably I am worse at it than I think, but I can't ever know.

One interesting thing that you might want to explore is the fact that the well-educated seem to actually be *more* prone to critical thinking errors of this kind. Witness the explosion of anti-vaccinationism among highly educated and wealthy families. They're not stupid or crazy. It's been suggested, in fact, that very intelligent and educated people are *more* likely to make these errors, because they are more skilled at coming up with defenses for their viewpoints.

Orac is also correct, though, that I was definitely not lumping personal experience in the same category as second hand stories. I'm not dismissing anecdotal evidence. I'm saying that if you want to be understood, you should use words the same way. You acknowledged that you do not use these terms in the same way. That is unfortunately the root of the communication problem here. So I provided the correct term in this setting for what you were describing. Anecdotal evidence. When someone in this setting says "evidence-based", they are generally referring to the totality of evidence. Not just one specific bit of it. And when you look at the totality of evidence, you can see that they are wrong. Their conclusion is based on very limited and in some cases misframed evidence.

We get a lot of people on here who defend outright woo on the basis that "I've seen the evidence!" which consists of them seeing what a quack has led them to see about their child. That's why folks here get a bit jumpy about someone calling that sort of attitude "evidence based".

"A person with evidence based biases will say “I don’t eat mutton because I associate it with death”"

OK, I take back a lot of what I said. That is not comparable to my wine-migraine example, nor to the chemo refuser example. A person who says that knows that it's an emotional association that brings up unfortunate memories. A person who refuses chemo because they saw someone die while on it doesn't see it as an emotional association, they see it as *fact*.

I really don't think you understand the hole you're digging for yourself here.

Calli, I have little care if I am in a hole or not. I am frustrated why so many seem to believe individuals bases their decisions based upon abstract facts. Two children had turned away from the best course of medical treatment to save their lives, because of the historical and ongoing relationship that wolves wearing white clothing have caused. You say you trust the scientific method, I can say I trust the scientific method. That does not change the fact that a large portion of the oldbloods have so little trust in the medical establishment that they are now doing actions that are detrimental to their own health.

I honestly ask you, why should they? Given the history of the last century, the nutritional experiments and everything else, why do you expect everyone to have such a developed superego that they can understand to divorce themselves from personal experience.

P.S. I am pretty sure you are an intelligent person.

One last thought, although Ricky died of his leuk he did last the two and half years of chemo and his last year of remission. He lived long enough to at least know the kiss and first love of a girl, so I guess that is something.

His mother had originally called me in to talk to her, she was very much on the fence about if he should go through the treatment. Scared, afraid, knowing her son might die, all the statistics and numbers were not enough to convince her. She wondered if she should just let him die naturally, as the will of the Creator.

I looked into her eyes, I repeated the story of my own first beloved and how she had died and what it had cost. Then I swore to her with all the weight and authority that I have in my song, that I would take any chance to give her child another day of life. So then, she knew the path that we needed to walk.

Well, my point about the hole is that you're making it harder for your point to be heard. I'm not sure what you hope to achieve here if you don't care about that.

I think you might miss my point about intelligence. I thank you for the kind words, but intelligence is not a predictor of good critical thinking skills. And in fact, it might make it *harder* to be a good critical thinker, because the intelligent person can more deftly defend their false beliefs.. Personally, I think the only trait that really helps with critical thinking is humility, not intelligence.

"Given the history of the last century, the nutritional experiments and everything else, why do you expect everyone to have such a developed superego that they can understand to divorce themselves from personal experience."

I'm not expecting them to, and I don't think it's a matter of having a more developed superego. (See my point about humility above.) For someone who wants us to see the point of view of these people, you seem to have a rather low opinion of them. Critical thinking isn't a matter of divorcing oneself from personal experience. It's a matter of understanding that there is more than that.

Calli, Aiyee, there are two broad categories of people in this world. Those that use their intellect to seek the truth, and those that know the truth and use their intellect to construct their reality.

On the last point, we likely will need to walk two different paths on this. It is mine to see people as they are and try to steer them to better. At least, to have them ponder what they have not pondered.

Nor was it my intent to cast the oldbloods in a poor light. I am struck by the irrational behavior of those that expect our experience centuries to be thrown out because some want us to believe that somehow, things are different now. You are welcome to try to explain why the same culture that has never done right in the past is suddenly to be trusted.

Do you want to do fact based analysis of this situation? Then take all of the interactions between oldblood and EuroCanadian society, chart the outcomes, now explain to me why based upon the evidence there should be trust? Isn't insanity repeating the same actions over and over and expecting a different outcome?

P.S. Drinking more than three glasses of milk a day leads to bad health outcomes.

what people will say if she died after chemo?

In other "shocking" news, the toxicity test from the magical "Kearns Disintegrator" have came back.

Who could have seen that one coming?

@ Selena Wolf # 68

It was the Six Nations and Makayla’s family that turned it into a political-cultural issue, hence muddying the waters and turning the entire issue into something it was not.

That would be mere assertion w/o evidence, completely oblivious to the facts set forth in #53 and my previous posts in this thread, to which you attempt no rebuttal — and probably have not bothered to read. At least Toto, Greg Young and other bat-poop loonie trolls on RI actually read comments and make attempts to reply to the points therein. If you can't do as well as the trolls, I suggest you find something better to do with your time than embarrassing yourself further with abysmally arrogant ignorance.

BTW, Makayla Sault was a member of the New Credit band, not the Six Nations. You have absolutely no clue about any of this.
________
To those readers who can actually read: the difference between the two bands adds another point of possible illumination. The New Credit band is small, the Six Nations band much larger. As such, the hostility toward the bands from their EuroCanadian neighbors appears to be focused on the Six Nations, with nobody giving much of hoot about New Credit, where Makayla Sault's father is pastor of an Evangelical Christian church. Thus, I note with some interest that:
1) McMaster did not appeal the decision of FACS not to take Makayla into custody, thereby abandoning her to the clutches of Brain Clement.
2) Though Makayla's case made the news in Ontario, the poop did not hit the major national and international fan until 'J.J.' the Six Nations child entered the picture, which brought out DeYo and the other Six Nations haters.

But, no, white people don't have politics. It's all about medical science for them. Those damn Injuns with their juju are the only racists here. So can we get them the hell out of our way, send 'em to Manitoba or something?

See, if you think there aren't several real estate developers who've already sketched out rough plans for the Six Nations rez, have connections in the Canadian media, and are willing to play the long game to get what they want, you're incredibly politically naive. Big Real Estate makes Big Pharma look like angels from heaven above. (c.f. Sterling, Donald.)

I hope I am not the only one here who sees that neither sadmar nor Colonel Tom are being honest actors. If they were to be honest (and tell no lies as people of the longhouse never do) they would say to you that it doesn't matter if a girl (or two!) die(s), what matters is that the autonomy of their tribe/clan/people/longhouse is established. I don't know about sadmar, but Colonel Tom has confessed he is banned from entering Canada—I don't know why nor do I care for the sake of this argument, but I have to assume he has committed some offense in Canada that has resulted in that ruling. I don't give a shit about the ethnicity of children who have leukemia, I speak as a mere physician who is currently receiving chemo for leukemia himself, those children deserve the best that their country—Canada—can give them. I hate to hear excuses as to why this should not happen.

@Wendy
They will say the treatment failed. However the only hope she had for recovery was in chemo and instead she stopped valid, proven treatment and went to a charlatan thereby reducing her chance of survival from 70% to 0%.

@sadmar #86

Yes, I am aware that Makayla Sault and her family are of the Mississauga/New Credit Band. And, yes, I am very aware that it is different from the Six Nations. However, from both the Six Nations and Makayla’s family (see? I did mention them separately; hence, indicating my awareness that they are separate entities) have been united in their support of the Saults. However, the Six Nations continue to assert that this entire issue is indicative of the larger historical-political issues surrounding First Nations people. Some have, recently, even gone so far as to bring the very painful issue of the Residential Schools into the debate.
And that is what I, personally, object to.
McMaster University Medical Centre (MUMC) filed a report with the Brant (not, I might add, “Brandt”) Children’s Aid Society when they were informed of Makayla’s decision to quit treatment. This appears to have been standard procedure; MUMC has a Child Advocacy and Assessment Programme (CAAP) which results in regular consultations with local Children’s Aid Societies (and vice versa) to ensure the safety of all children that come through their doors. The concern was that – as an eleven-year-old – Makayla may not have the emotional maturity to completely understand the ramifications of her decision to complete chemotherapy.
The Brant CAS investigated and decided that Makayla did have the emotional maturity to make the decision that she made and, it is my understanding that MUMC accepted this finding and didn’t pursue the issue further as their main concern had been addressed.
Issue closed.
Unfortunately, it was not to be. Continued agitation by – predominantly – the Six Nations (less so by Makayla’s family) continues to bring forth the raw spectre of the historical treatment of First Nations people at the hands of White Government: broken treaties, residential schools, forced-adoption programmes and other abuses to numerous (and irrelevant) to name here. BUT THAT IS NOT WHAT THIS IS ABOUT. This is about whether- or not a child has the ability to make an informed decision about her disease. It just happened to involve a First Nations family.
[I won’t even get into the fact that this family – as Evangelicals – place a great deal of belief in spiritual visions and “miracles”. It will just muddy the already murky waters further. But I digress.]
Now, I don’t know about you, but every so often this type of case happens in Ontario. We’ve had cases involving Mennonite children and Jehovah’s Witnesses children who refuse life-saving treatment and, as a result, are always referred to the local Children’s Aid Societies for assessment. This has nothing to do with their cultural background and everything to do with the fact that it must be determined if the child and/or the child’s family is completely aware of what they are doing. This is not a bad thing. In fact, I would argue, that child protection is a very good thing.
So, I stand by my position that the Six Nations and Makayla’s family (see? Again I separate them) have blown this issue entirely out-of-proportion and turned it into a massive political issue rather than an issue of concern for the child. It has, unfortunately, become a highly controversial platform for airing past abuses rather than the more immediate one of ensuring that a child is receiving adequate medical care.

This has never been about racism. This has never been about First Nations vs. White Government. This has always been about what is good for the child and whether- or not the child can make an informed consent.

So 'assisted suicide' is legal in the US, as long as it is performed by a conman?

Or, perhaps, I should say the issue should have remained focused on the welfare of the child and their right to potentially life-saving medical care, and not devolved into the morass of political maneuvering that it has.

A child has died; perhaps needlessly. May she rest in peace.

@Selena & Lancelot:

I agree 100%, although I don't agree that sadder and Colonel Tom are being dishonest. Rather, I see as much cognitive dissonance in them as they no doubt see in us.

In any case, one child has already died, and another is very likely to die within the next year or two, because of this. That is why I tend to try, whenever someone brings up the historical and justified grievances the native peoples have with the Canadian government and its predecessors (obviously, those are not the words they use, but that is what the consequence of not requiring these girls to be treated is), to acknowledge these grievances but then immediately point out that what is really at stake here is the life of a little girl. Whenever I hear some of these arguments I seriously start to wonder whether the real subtext behind this is that if the price for asserting the independence of the First Nations against the Canadian government in this issue is unnecessary and preventable deaths of two aboriginal girls at the hands of a white quack from Florida who isn't even using traditional aboriginal medicine, then that's a price the girls' elders are willing to pay.

Of course, when I point this out I'm lambasted. I understand. I realize that it's inflammatory to say such a thing. On the other hand, try as I might (and, believe it or not, I have tried), I have yet to see anything written, either here or elsewhere, that has persuaded me that there is not at least an element of this going on here.

As I've said before, when it comes to children with cancer being denied a chance at life, neither race, country, nor religion really matter very much at all to me. Actually, they don't matter. I don't care if the children are white, black, yellow, brown, or red. Here, all I see is one little girl who has died an unnecessary, protracted, and almost certainly unpleasant death and another one following in her footsteps, behind her by mere months or, at most, a year or two. Truly, these girls' communities have utterly failed them.

But, no, white people don’t have politics. It’s all about medical science for them. Those damn Injuns with their juju are the only racists here. So can we get them the hell out of our way, send ‘em to Manitoba or something?

Now you're just getting downright silly. No one has said that white people don't engage in politics or are driven only by medical science. Rather, the argument I'm hearing seems to be that indigenous peoples don't engage in politics, which is equally nonsensical as saying that white people don't. All organized groups of people engage in politics. So what? That's akin to saying that rain is wet and snow is cold. The issue is what the politics is used for. And, again, as I point out above. The issue is not whether white people or indigenous people do or don't engage in politics.

It's the lives of two little girls, one already dead, the other dying (although she and her family don't realize it yet).

See, if you think there aren’t several real estate developers who’ve already sketched out rough plans for the Six Nations rez, have connections in the Canadian media, and are willing to play the long game to get what they want, you’re incredibly politically naive. Big Real Estate makes Big Pharma look like angels from heaven above. (c.f. Sterling, Donald.)

Now you're devolving into conspiracy mongering. Wake up, sheeple!

Perhaps Mike Adams or Alex Jones would like to have you comment on this.

The fact that I am "banned" from Canada is a mark of honour. I did my part for my wife's people at Oka, I have regret but no shame for my actions. Strangely, the U.S. military and to a lesser degree government had no great problem in my actions during the conflict. They problem they had with me, damn Reagan, damn Bush, is when I stood up for the rights of my C.O. when the nameless faces accused him of the crime of being a homosexual. When they spoke these words before his wife, before their children. Then they had a problem with me.

It was said, that I have no problem with the children dying. Then you don't know me. I have given what words as I can, but my standing is small as an outsider to her Sisters. They decide, it is their right as it is my honor to defend them. If any of the EuroCanadians truly wished the best for these children, they could have done it legally.

If you don't think this about racism, or culturalism, then you should not be trusted with sharp objects. I'm not sure you have the sense to point the sharp side away from yourself. Of course it is about politics, about forces that wish to degrade and destroy North America's oldest living democracy, that want to scatter the people to the winds, to end all that we were, all that we are, and all that we might have become.

Lastly, a little story we and the medical profession. In honour of the daughter of my wife's youngest who(m?) is 13 today. I am old, but not that old. My EuroAmerican wife was no spring chicken when this child was conceived. This was a very planned pregnancy, with all the steps you'd expect for a couple that were trying hard, but had not resorted to medical assistance yet. No fertility drugs, but tracking temperature and cycles. We had done the proper things on the proper days, and praise to the Creator it appeared that this pregnancy was going to proceed. Without many details, 9-11 weeks were normally when hope ended and pain began. Yet at 17 weeks and six days (+/- 3 days) into the pregnancy we had the ultrasound preformed. The fine doctor, highly recommended and well vetted told us the results looked fine for a 13 week fetus. Ahem, said the wife, the fetus is on its 18 week. No, said the fine doctor, I've looked at the ultrasound and based upon the size and degree of development the fetus is on its 14 week. (Yes, we confirmed that you count fertilization at week #2) No, we said, look Doctor we're an old couple, we know when this child was conceived. Ah, said the fine Doctor, you must have conceived it three weeks later.

So, we left, we thought about that fine Doctor who would not believe an old couple knew when they'd done the dance, not believe them when they had calenders and charts, temperatures and the like. We thought about what kind of Doctor he was, that he would not believe the words of his patients. We found another Ob.

The second Ob, she looked at the ultrasound, she ran her little tests and agreed with the first doctor of the most likely date of conception. But, we said, it is not possible, it was three weeks earlier. She did not believe us, but she listened. At 41 weeks she agreed to induce labour. When daughter was born, well, it was late. She came out, as the doctors told us "a little overbaked", the poor little thing said a single sad "melp" before being rushed to an incubator under enhanced oxygen. When she released a week later, the doctors pulled me aside and we discussed the potential for their being damage from the hypoxia.

Had we stayed with that first doctor, if my wife did not have a soul of iron and a heart of fire, she'd not been induced for several more weeks. The child would have never had the opportunity to be born, because a fine Doctor knew more than the parents.

Happy Birthday, Littleone.

@Orac

Wake up, sheeple!

Now you've done it!

Is this about racism? How many dozens of children have died at the hands of Brian Clement, how many dozens more will die from his lies and propaganda. Yet your culture can not handle a monster of your own creation. He lives and prospers within your society, yet you do nothing to stop a monster. How many thousands do you allow to die, a year?

If you do not think this about racism and culturism, then you really should not be trusted with sharp objects.

P.S. If we go by Webster's first definition for the word "Lie" which is the deliberate act of telling a false statement for gain or advantage, then no the people of the longhouse do not lie. It really hurts them when they have to deal with people like Brian Clement.

@herr doktor bimler, not just conmen. Most adults have the legal right to shorten their days by either denying treatment or choosing worthless treatment. I believe that death by McDonalds is a popular variant, death by Kools, death by quackery. However, you help just one person to take a knife to end their suffering and they are allllll over your behind.

@Colonel Tom

Is this about racism? How many dozens of children have died at the hands of Brian Clement, how many dozens more will die from his lies and propaganda. Yet your culture can not handle a monster of your own creation. He lives and prospers within your society, yet you do nothing to stop a monster. How many thousands do you allow to die, a year?

Clement is a product of humanity. Every culture has its charlatans who prey upon the unwary. What prevents his being stopped is largely to do with the laws that are in place. Those of us who support science-based medicine and would love to stop him can't just walk up to him, truss him up and take whatever measures we need to to stop him.

Part of the problem in these two cases is that the people involved are making it more about the clash of cultures, rather than making it about the lives of the children. While they may believe that they are doing the right thing, based on prior experiences, the arguments appear to be more, "We should be able to do X because of our culture" instead of "We should be able to do X because we believe it will save this child's life".

While it's important to understand the cultural background in terms of why the families are taking the course they are, the treatment these children receive shouldn't be about culture. It should be about their lives, their health, and what medicine will actually help heal them.

So because US government isn't able to shut down the operations of a quack, it's their fault the child will die?
And what if the quack moves to Mexico (home of several other cancer-quacks)?
I think the quacks are to blame, first and formost.

Is this about racism? How many dozens of children have died at the hands of Brian Clement, how many dozens more will die from his lies and propaganda.

I seriously doubt that Clement's actions have anything to do with racism. Rather, they have everything to do with greed. He will fleece any cancer patient he can, regardless of race, creed, nationality, color, or beliefs. My first post about him described how he took advantage of a young Irish mother:

http://scienceblogs.com/insolence/2013/12/20/when-false-hope-leads-well…

The vast majority of Clement's victims appear to be white, and the only color Clement appears to care about is green, the more the better. He saw an opportunity to exploit the distrust your people have for "western" medicine, and he took it.

Yet your culture can not handle a monster of your own creation. He lives and prospers within your society, yet you do nothing to stop a monster. How many thousands do you allow to die, a year?

It is true that Clement prospers because the law in Florida has not stopped him. I remain as puzzled about this as anyone. Indeed, I have written extensively lamenting how quacks like him in various states can thrive without the state medical boards doing a damned thing to stop them. So mea culpa for the state governments in the US.

However, you are sadly mistaken if you think that we are not trying to stop him and quacks like him. I know people who are trying to stop Clement, but cannot yet comment. It will be public soon enough. As for myself, I'm trying to stop Clement by lifting the rock and shining the light of science on the slime where he lives. It's the same thing sort of thing I and a friend of mine (Bob Blaskiewicz) have been working on for a while with respect to another cancer quack named Stanislaw Burzynski. It's hard, frustrating work. Perhaps we should turn more of our attention to Brian Clement now. Of course, doing that means taking some attention away from other quacks. It's a zero sum game, and there are too few of us.

Of course, it's necessary to point out that your accusation can be turned right back at you. Your culture cannot protect its own children from this monster any more than my culture seems able to shut him down and mete out to him the punishment he so richly deserves. He is currently prospering by preying on your children, after all, although mostly he prospers by preying on Americans and Europeans. Yet all I hear from the leaders of these girls' communities is support for their families' right to choose indigenous medicines. Can you not see why these statements come across to someone like me as extremely cynical?

@Todd W. If you knew a man was a murderer, was armed and pointing a sidearm at people, would you expect your society to be able to protect or at least prosecute after the facts.

Racism.

White society "We can't shut down a murderer because we have rules and laws in place"

Oldblood society "Our laws that date back a thousand years, we will respect the rights given to a mother. It is our law that all warriors will protect the rights of a mother."

Yet, somehow they are different.

You care to guess how many children have died at the hands of this quack?

@Colonel Tom

@Todd W. If you knew a man was a murderer, was armed and pointing a sidearm at people, would you expect your society to be able to protect or at least prosecute after the facts.

Oh, believe me that I do not for a moment condone Clement. He should be stopped, and those in the position to do so should do it. He should be hauled before a court, tried and convicted for practicing without a license, among other charges.

What I am saying is that we need to work within the context of the laws we have in place. We are limited in what we can do to achieve the ends that will protect patients from being preyed on by him. At the same time, we need to work to change the laws to make it easier for the respective authorities to act appropriately. Most medical boards lack teeth to do any meaningful action to stop quacks like Clement.

I, as a private citizen, cannot walk up to Clement and beat the crap out of him or kill him. If it is okay for me to do so, what is to stop a member of his family, or one of his supporters, from coming to do the same to me? If I were to kill Clement, certainly the end result would be lives saved from his predations, but that does not justify my being able to do so without severe consequences against me. If I were allowed to do so without repercussions, what is to stop someone else from resorting to the same means in a different context? Who decides when it's okay to murder someone and when it is not?

Since we are bound by the laws that we have, we must operate within the confines of those laws.

So, what are the warriors of oldblood society doing to protect children from Clement?

Exactly my question. I admit that our "white" society (which isn't so white any more, BTW) has failed when it comes to protecting the public against quacks like Brian Clement. Will Colonel Tom admit that his oldblood warriors have failed to protect Makayla and JJ from Clement?

Because they have failed them, every bit as much as our society has failed to stop Clement. The difference I see is that there are Americans and Canadians, myself included, who are trying to stop Clement. Now, I could be completely ignorant here. Maybe there are oldblood warriors trying to protect Makayla and JJ as well. Certainly I would hope so and expect so, based on Colonel Tom's words. If so, however, I have yet to see them. Perhaps Colonel Tom can help educate me: Who are the oldblood warriors trying to prevent Clement from preying on Makayla and JJ, not to mention the future Makaylas and JJs that he will almost certainly try to con?

@Orac

Who are the oldblood warriors trying to prevent Clement from preying on Makayla and JJ?

And what methods are they using to try to stop Clement?

Yes,

Just to reassure Colonel Tom, I'm not asking this to score points. I really do want to know what Makayla's and JJ's communities are doing to protect them; i.e., who the oldblood warriors are protecting their children from Clement and how.

Orac, of course you are asking this to score points. You run from accepting responsibility for the evil your own society creates, you divert and misdirect. Hundreds if not thousands have died at his hands, yet you only express concern when during a treaty dispute about the rights of a mother and her clan to have say in a child's life. '
'
Please remove the timber from your own eye before you waste your resources upon the mote in mine.

You run from accepting responsibility for the evil your own society creates, you divert and misdirect.

Wait a moment. Shining a light on what this quack is doing is running from responsibility? Trying to educate people about what will happen if they trust this individual is running from responsibility? With all due respect, your comments are misplaced.

Remember, Clement is just one of the many quacks that Orac has written about. One way that Orac (and others here) work to stop those quacks is to shine the light on them, to expose them and to educate.

Hundreds if not thousands have died at his hands

Citation for the number of deaths caused by Clement? Hyperbole does not help matters.

I notice you still have not helped us learn what the oldblood warriors are doing to stop Clement. Every person works within the means they have to effect the changes we all agree need to happen.

"Hundreds if not thousands have died at his hands, yet you only express concern when during a treaty dispute about the rights of a mother and her clan to have say in a child’s life."

This is demonstrably untrue, CT. Orac provided a link to a post addressing and expressed concern about Clement in 2013, in his post @101,

Typo: should read "addressing and expressing", not "addressing and expressed".

I am flabbergasted that there are no First Nation oncologists or medical doctors in Ontario. Surely one would have been consulted as a person who knows both the traditional methods and modern medicine. And if there are none in Ontario there are plenty in the West.

@Todd W, it is a reasonable extrapolation from the length of his "practice" and the number of people that have been seen at his clinic. While speculative it is hardly hyperbole.

@Orac, you sit behind a sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto. I am so impressed at your efforts. Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer? Such bravery you show. You do remind me of that doctor that would have killed the daughter of my wife, you expect respect without regard, and grow angry when confronted.

@Chris, there is also medical staff at the homeland, although obviously no oncologist. I could not speak for what advice the staff at Two Rivers said to the mother, but I believe they are competent (ish) people and likely gave the advice that you expect.

Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer?

I suggest you click the hyperlinked word "Orac" at the top of the page, in the phrase "posted by orac on january 20, 2015", before proceeding with this line of...well, for want of a more accurate word, 'thought/.

The fact that I am “banned” from Canada is a mark of honour. I did my part for my wife’s people at Oka, I have regret but no shame for my actions. Strangely, the U.S. military and to a lesser degree government had no great problem in my actions during the conflict.

This is as clear as mud. Were you on active duty 25 years ago?

it is a reasonable extrapolation from the length of his “practice” and the number of people that have been seen at his clinic

Those two items don't constitute the basis for any extrapolations, much less a "reasonable" one.

@Colonel Tom

When you said

Hundreds if not thousands have died at his hands

you were making a statement of fact ("have died" vs. "may have died"). If you are going to make accusations like that, then you best base it on actual facts, not speculation. Your extrapolation is no more reasonable than saying that because someone has murdered two people in a few days, and they are currently 60 years old, they have therefore murdered hundreds or thousands of other people.

@Orac, you sit behind a sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto. I am so impressed at your efforts. Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer? Such bravery you show. You do remind me of that doctor that would have killed the daughter of my wife, you expect respect without regard, and grow angry when confronted.

While I admire the passion you have shown about this issue, again, your anger at Orac is misplaced. Let us turn your question around. What have you done to stop Clement from preying on these people?

Also, if you think that Orac is angry? You are quite mistaken. He has been quite restrained in his comments to you, but you do seem determined to invoke his anger. Why act as an adversary, rather than try to see common ground and work toward the common goal you both share?

@Orac, you sit behind a sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto. I am so impressed at your efforts. Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer? Such bravery you show. You do remind me of that doctor that would have killed the daughter of my wife, you expect respect without regard, and grow angry when confronted.

I was originally going to rise to the bait, as you are obviously trying to make me angry. You succeeded when you first accused me of lying about my intent when asking you what the oldblood is doing to keep Clement from preying on their children. I was going to respond in kind to your accusations and insults, but then I thought better of it. Instead, I went away for several hours, did other work that required doing, wrote my post for tomorrow, and then came back. I advise you to do the same, and step back. I fear you will not, but hope that you will.

In the meantime, I'll answer your question about documenting, investigating, and doing anything but yowl and stammering? The answer is yes. I do more than those things. I am the chair of the board of directors of a recently formed organization dedicated to standing up for science and fighting quacker and quacks like Brian Clement, the Society for Science-Based Medicine. Quite simply, you have no clue what you are talking about if you think that this blog is all I do to stop quacks like Clement. Your ignorance, however, is forgivable. This is, after all, the blog where I write under a pseudonym. However, finding out my real identity is quite easy, it is about the worst kept secret on the Internet. Nor is this blog "sporadically read." It gets between 300,000 and 500,000 visits a month, and my other blog, where I am editor and we discuss the same sorts of issues under our real names, is hovering close to 1 million visits a month. Those are not traffic numbers of "sporadically read" blogs.

What have you done lately to stop Brian Clement? Do you chair an organization (even a small one like mine) that works against such people? Have you complained to the Florida medical board about him? Or do you lament that these girls are dying at the hands of a white quack and do nothing? In fact, even if your characterization of my running "sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto," I've done more than you have on this case.

Also, if you think that Orac is angry? You are quite mistaken. He has been quite restrained in his comments to you, but you do seem determined to invoke his anger.

Actually, Orac was angry, but, unlike Colonel Tom, he was able to restrain his anger and resist the temptation to counter an accusation of lying with the same.

Although it isn't customary for Plexiglass boxes of blinking lights to lose their cool, rest assured, I at least would not have been disappointed if you saw fit to unleash some not-so-Respectful Insolence on him.

A big thanks as well to Selena Wolf for clearing up some inaccuracies propagated by the usual suspect and the new guy.

I am, honestly, dreading posting this a bit, but would feel dishonest if I did not. So.

I completely believe Orac's assessment of the case. I am in favor of making it harder for quacks to pray on vulnerable people*, and for a real examination of when parents' rights to to their children represent a real conflict with the rights of those children.

But I think it's a real problem, as some people (not Orac, not even most people) here have alleged to say the tribes "made it" about race, or to pooh-pooh that history is really significant here--and not just history. I know less about Canadian NDN issues, but in the US, there are serious problems with Native children being put in foster care at really disproportionate rates (see the Lakota Law projects numbers), regular violations of the Indian Child Welfare Act about foster and adoption placement, and serious problems with IHS (Indian Health Services) administration. Not 100 or 25 years ago. Now.

Anecdata is not "evidence." But a lot of racial bias is not trackable by this kind of evidence, especially when the people keeping the stats are the ones in power to begin with. (Look at recent events regarding how poorly statistics about police shootings have been tracked federally.) But being wary about some kinds of interactions, for marginalized people, is not stupid or unfair or reverse racism or the equivalent of a well-off suburban mom's Google U on vaccinations. It's generally a reasonable response to a prepoderence of experiences. When the mayor of NYC says he has to talk to his black son about possible interactions with the police, that is a reasonable response to anecdotal experiences.

Again, I'm not saying this turned out well, or these were the right choices. But the implications that this started on a neutral field until race was "brought" into it is specious, and I really hate to see that attitude being accepted unquestioningly. Even if Colonel Tom was making his case really, really badly. And for people who experience racism in so many ways that are continually dismissed (not just in health care or legal issues--in athletic team logos, "hipster headdresses" cartoonish portrayals of Indians if any in mainstram media), having people dictate to them when it's a race issue will not help your case.

* I think vulnerable people includes people with serious illnesses and their families, but also especially includes people whose experience has already primed them to be wary of the establishment. Charlatans who tart up their quackery with ludicrious claims to cultural/ethnic traditions are among the worst, IMO

@Narad, 25 years ago I would have been Selective Reserve. I would be called to service after that date for the end of Bush War 1. It was not my intent to make things on events at Oka. Not to mention the Wisconsin Walleye War.

@Jubilee, there is the potential that I am doing association between certain individuals and that same Ob Dr from many years ago. It was the 13th birth anniversary yesterday, memories comes back.

I am, very unfortunately, now involved with the magical mystery Kearns Disintegrator, far greater than the most magical of devices ever conceived of in olden days. My opinion of the honor and skill of EuroCanadians is just growing by leaps and bounds.

@Jubilee

http://www.propublica.org/article/republicans-say-no-to-cdc-gun-violenc…

CBC had a "J.J." article yesterday.

http://www.cbc.ca/news/aboriginal/makayla-sault-s-death-shifts-the-spot…

I think Connie, the article author, has done a great job covering this story.

In her final paragraph, Connie writes:

"But now, with Makayla's death, there have been a number of calls, particularly in national media, to ensure that J.J. doesn't suffer the same fate. As the head of the Brant CAS, Koster might be the only one in a position to make that happen."

Unfortunately, given Koster's comments in the article and in previous articles, if Koster is "the only one" who could ensure that J.J. doesn't "suffer the same fate" (as Makayla), I suspect that J.J. is, as Orac put it, "doomed".

But, I guess only time will tell.

In my view, both Brant CAS and Judge Edwards failed in or outright abdicated their "child protection" role in respect of these girls.

I'm far from convinced that Canada's Supreme Court would agree that Judge Edward's Constitutional argument would apply ... or is appropriate ... in respect of situations involving a child with a life threatening condition.

However, as the case wasn't appealed, and hence will never get to the Supreme Court, this will likely remain a moot point for the foreseeable future.

I ... and I'm sure everyone else ... would be very happy if it turned out that a traditional treatment or combination of treatments did result in a cure for J.J.

However, this isn't what I think will happen and I'm not sure how mom will handle things if J.J.'s reported remission ends.

http://www.tworowtimes.com/news/kanienkehaka-girl-left-chemo-no-visible….

Jerry Coyne also nailed it.

http://www.newrepublic.com/article/120823/canada-lets-makayla-sault-die…

I might have to do a comprehensive update on my not-so-super-secret other blog for Monday, as it's been a while since I've written about the case there. It might be a little bit repetitive, given how I've written about it a couple of more times here since then, but I think it's something that needs to be talked about there as well.

@DGR

Why do you qualify it as "reported remission"? Do you doubt the test results as reported, or did you mean something more of the nature of her "so-called" remission. While it strikes me as rational to doubt this is a true remission, it strikes me as irrational to doubt these facts simple because they were written with red ink.

As far as your legal analysis, again your reference to the Two Row Times might present countre weight.

https://www.tworowtimes.com/news/can-court-force-six-nations-child-back…

https://www.tworowtimes.com/news/local/makayla-sault-alive-well/

I have no great expectation that Canadian Courts would respect U.N. Treaty. Obviously, from my side of things I'm skeptical based upon a long historical record, that Treaties provide much protection.

To the extent that this is politics, forced removal of Jada from Six Nations Territory would be viewed highly unfavorably. Never again.

It's quite accurate to refer to it as a "reported remission" because that's what it is. It is a remission reported by the mother in the form of a press release and confirmed by no other sources. Seriously. You're being annoyingly pedantic now and imputing intent where there is none.

That being said, I don't doubt that JJ very likely is in remission, because that's how these leukemias behave after the first few doses of chemotherapy. My term for it, however, would be "temporary remission," because, without additional treatment, she is close to 100% likely to recur within the next several months, as pediatric oncologists have described. The vast majority of patients achieve a first remission after initial chemotherapy, often even if the chemotherapy was incomplete. Keeping them in remission until they are actually cured, now there's the rub. That's the hard part. That's why more than two years of chemotherapy is required. Oncologists (and, more importantly, patients) learned the hard way the price of letting up too early. Back in the early days of chemotherapy for leukemias, particularly childhood leukemias, physicians were astounded by how rapidly remissions could be achieve; unfortunately, they were soon also astounded by how nearly every patient whose leukemia had seemed to "melt away" would recur within a year.

@ Colonel Tom

You asked "Why do you qualify it as “reported remission”?"

Well, it was "reported" in the Two Row Times article I linked to.

But, mostly just a personality thing.

Unless I have been able to personally verify information ... whether "written with red ink" or not .. provided by a third party, e.g., MSM, I don't feel comfortable presenting the information as an established fact.

Silly, I know.

For myself, I have no reason to question J.J.'s remission.

You wrote: "As far as your legal analysis".

More, my "opinion" based on a review of relevant documents.

Just as the statement from the article at the first link of your comment that "If the court makes that decision, it would violate Articles 10 & 24 of the United Nations Declaration on the Rights of Indigenous Peoples" is the opinion of the article author.

Here's the declaration:

http://www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdf

I'll just note that even if a court agreed that one or both of Articles 10 and 24 applied to circumstances identical to those of the girls, Article24(1) could be seen as conflicting with Article 24(2).

I'll also note that, whether we all agree with it or not, the position of the Canadian government is that the declaration is "aspirational" rather than "legally binding".

http://www.aadnc-aandc.gc.ca/eng/1309374239861/1309374546142

On the topic of U.N. declarations/conventions, as Judge Edwards made no effort to establish what medical treatment would, from an efficacy aspect, be in the "best interests of the child", it could be argued that Judge Edwards' decision violates Article 3 of the U.N. "Convention on the Rights of the Child", which reads:

"1. In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.

2. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures.

3. States Parties shall ensure that the institutions, services and facilities responsible for the care or protection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervision."

http://www.ohchr.org/en/professionalinterest/pages/crc.aspx

Beyond this, my reading of the Ontario "Child and Family Services Act" is that a CAS has wide latitude in deciding where an "apprehended" child resides.

http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_90c11_…

This being the case and in respect of the above-mentioned "Article 10", if the court had agreed that one or both of the girls should be "apprehended" for the purpose of ensuring required medical treatment, it wouldn't necessarily follow that the child would be removed from the reserve, i.e., if another family on the reserve agreed to house the child and ensure the received the required treatment, the CAS could have gone with the arrangement.

This is the decision re: J.J. rendered by Judge Edwards:

http://www.canlii.org/en/on/oncj/doc/2014/2014oncj603/2014oncj603.html

As indicated in the decision, Brant CAS had concluded that "J.J." was "capable", within the meaning of the Ontario "Health Care Consent Act" and just like they had with Makayla, to make decisions concerning her treatment.

http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_…

I'll just note that the Act has no age limitation, e.g., person 16 or older is deemed capable while person under 16 is presumed not (see Subsection 4(1) and 4(2).

Judge Edward did not agree with the CAS re: "J.J."' being "capable" under the Act.

He determined that the matter was a "child protection" issue and that his court was the appropriate venue for the case.

The basis of J.J. being a "child in need of protection would be Paragraph 37(2)(e) of the above-mentioned Ontario "Child and Family Services Act, which states:

"the child requires medical treatment to cure, prevent or alleviate physical harm or suffering and the child’s parent or the person having charge of the child does not provide, or refuses or is unavailable or unable to consent to, the treatment;"

I'd suggest that within the intent and purpose of the legislation, "medical treatment" should be read as "effective medical treatment".

Judge Edwards made no attempt to verify whether there was any scientifically valid "evidence" that the proposed "traditional" treatments would be "effective" for J.J.'s condition.

I suspect he was aware the "efficacy" issue might arise in respect of the proposed traditional medical treatment, as he later covered himself off by stating "Further, such a right cannot be qualified as a right only if it is proven to work by employing the western medical paradigm. To do so would be to leave open the opportunity to perpetually erode aboriginal rights."

I'm not impressed by his reasoning in either of the above statements (though erosion of aboriginal rights is a legitimate concern that must always be considered) and I'm sure in most cases both aboriginal and non-aboriginal people would prefer that their ... and their children's ... medical treatment have some sort of empirical evidence that supports its efficacy/safety.

After deciding the "child protection" and "jurisdiction" issues, he then continued:

"[58] The evidence is also clear that, at the 27 August meeting with the hospital staff, and as testified to by Dr. Marjerrison, D.H. had expressed her strong faith in her native culture and was discontinuing her daughter’s chemotherapy treatment to pursue traditional medicine which she and her family believed would help to heal J.J.",

and:

"[60] It is at this juncture that the band argues the court must consider the application of subsection 35(1) of the Constitution Act, 1982, which reads as follows:

35.—(1) The existing aboriginal and treaty rights of the aboriginal peoples of Canada are hereby reorganized and affirmed."

I'll point out that there is no indication that any of the participants claimed that "J.J." should, for whatever reason, be denied the opportunity to avail herself of "traditional medicine", so I'm puzzled as to why in these particular circumstances the judge chose to entertain this argument in a family law child protection case.

Beyond this, my thinking is similar to that expressed by Professor Ryder in the article linked to below:

http://www.thestar.com/news/crime/2014/11/19/aboriginal_medicine_ruling…

The above article provides information, as you've also eloquently expressed, as to why distrust of, among others, the main-stream medical community, exists in aboriginal communities.

And I'm sure that Brant CAS and Judge Edwards were fully aware that "forced removal of Jada from Six Nations Territory would be viewed highly unfavorably."

However, as previously mentioned, I don't see that as being the inevitable outcome had the Judge decided that either girl should continue with chemo. Had this been the case, one would hope that both the band and CAS would have negotiated a reasonable compromise.

Whether or not either girl would over the long-term be better off having gone through the scenario you mention, with the accompanying emotional stress, etc. is a question I don't have the knowledge to answer.

I think we can all agree that no matter how things played out for these girls at least some of the adults involved would disagree with the decision.

What we're left with at this point is that aboriginal children with life threatening conditions are not afforded the same protections ... sometimes from their loving and caring parents' beliefs ... under child protection laws that are available to other Canadian children.

But perhaps the discussion of whether this is a desirable state of affairs and, if not, how it can best be resolved is best left to the overall Canadian aboriginal community.

Anyway, all of the thoughts I've expressed are simply my layman's opinion based personal interpretation.

Obviously other people will have other opinions that are no less legitimate than my own.

@Jubilee:

I am, honestly, dreading posting this a bit

I, for one, wish you had posted it earlier.

However, as previously mentioned, I don’t see that as being the inevitable outcome had the Judge decided that either girl should continue with chemo.

My understanding is that induction chemotherapy (which J.J. only completed 11 days of) requires inpatient hospitalization.

@ Narad.

"My understanding is that induction chemotherapy (which J.J. only completed 11 days of) requires inpatient hospitalization."

I wasn't aware of that. Thanks for pointing this out.

@DGR, thank you that was an excellent presentation.
I am many things, a lawyer is not one of them, nor am I a Canadian. At best, information from their council goes to "mine". While funds for lawyers and weapons for a siege are requested, not all legal issues are shared.
I am now confident I need not lecture you about the reaction that can occur when action is taken against a society of oldblood. This is the world we live in, sins of generations and actions of others attach themselves to all.

I would point out one area we must disagree upon. I do see this as a bias that, frankly, causes my dying heart excessive stress. It is spoken by others, and I see some of this in your words, as if Jada had no other protection from an gullible mother and thus the forces of imperial Canada must act to protect this child. I do not see it that way, she primarily has her traditional system, the Women. She has her clan. Above all of this, she has her government that could have taken action, if they have decided it was needed. Even if they are wrong, that is her government, and they did and have looked after her interests as best they could. Yet, when words are written about this situation their lawful authority is ignored and downplayed. She was offered protection by her government, you just do not believe that they made the best choices.

Well, I finally have an off-RI home for my longer posts. #1 real post there is comment on this thread. The post is incomplete. I posted it now as it address issues raised above about my intent, and about Orac’s positions and character. I feel these matters should be addressed ASAP, not wait until I can complete the post with a full discussion regarding the cases of Makayla Sault and J. J. I hope it will clear up some things. We'll see. Please take a look. Its not a 'regular' post. Thanks.
https://sadmar.wordpress.com/2015/01/25/makayla1/

Aboriginals don't trust us,for good reasons, thousands of lives of their innocent children are ruined by us, many have died,even while tying to get medical help and have been ignored.
We have to prove to them,that they can trust us,And that is a long haul!

So we must let them ruin the lives of their own children, with the help of white quacks?

@Renate, History is a continuous cloth. You can not expect that all that the oldbloods know about EuroCanadian society to be forgotten in a moment, all history ignored, all experience forgotten.

They are your quacks, removed the beam in your own eye before sending in Federal troops to remove the mote in ours.

Straw man. No one has said that.

On the other hand, you seem to be absolving the nations involved of all blame in this.

Someone on the not so secret other blog as posted how things are handled south of the border.

Let me say as a nurse that I find it......... absurd that Colonel Tom insinuation that McMaster was disrespectful towards traditional healing since the bulk of my texts about integrating cultural practices and nursing came from Canada and one of the articles primary authors was affiliated with McMasters..

https://books.google.com.sg/books?id=kdZLpKyys-IC&printsec=frontcover#v…

I also find it unlikely that she was given credible medical advice, given that the initial reporting as quoted here
http://www.ctvnews.ca/canada/cancer-stricken-first-nations-girl-forgoin…

had Garlow, her spokeperson falsely misrepresenting Ph+ as making Makayla more vulnerable to nausea.

@Colonel Tom: I'm impressed by your deep knowledge of the cultural context in these cases. Could I email you privately about a professional matter?

Emily, I speak for no one, with no authority. I have no right to speak in any other name than my own.

@Painrack, much of what I know about this situation is from articles I've read in the "Two Rows Times", facebook and call to war emails that have been circulation for many months. The fact that harsh words were spoken apparently is not doubted by many, the opinion that skill and diplomacy on the part of McMasters could have improved the situation is more of an opinion held by me. I do not see where you can take the statement of "Anyone that practices traditional medicine for cancer should be thrown in jail" as oil to calm the waters? When offered the opportunity to monitor the children's progress, McMasters refused. Surely it would have been better that they monitor the situation so that when and if conditions deteriorated they would be there to advise wise treatment? To refuse to monitor, it strikes me as spiteful and petty. At least another organization offered to step forward on monitor Jaya's condition, so that there is a chance to be able to steer towards better treatment.

@Painrack. There was an excellent letter from a physician at McMaster's to the Two Row Times, he was very respectful and hopefully his act of honour will be remember the next time a child needs treatment.

Nor do I understand why McMasters apparently has so little trust. I see a thread of hostility from the People that I note but can not explain.

Colonel Tom, the statement as reported was “At first they said to the family that traditional medicines were 100 per cent ineffective,” Garlow said. “The doctors actually said to them that anyone who says that traditional medicines will heal this cancer should be thrown in jail."

That's a very important distinction from what you quoted. Your distortion of the quote itself is instructive. Verbal comments are frequently misinterpreted and distorted. If your reading of the article was misinterpreted, why not a harried discussion where the parents were emotionally distressed from seeing their sick child ?
Furthermore, actual true traditional Indian healing was published as routinely practiced, with guidelines on how to accommodate such practices from a private room, the use of chanting and visitation from the tribe. Herbal medications were the only iffy issue due to its potential drug drug interaction.

Could you imagine a compassionate Doctor, vehemently arguing that Clements was outright deceiving the tribes and should be thrown into jail for insisting that wheatgrass will heal cancer or that it's any form of traditional Indian medicine as opposed to traditional Eurocanadian quackery?
Or is Clements not part of the Anglo exploitation of minorities?

@PainRack I do not know why this idea of "Traditional" medicine seems to make the anglo press so much. It is a diversion. The question boils down to, do the Treaties signed with the ability of self-rule and sovereignty still matter. J.J. has a government that looks out after her welfare, abet you don't like their decision.

""""CHANTING""" I think you mean prayers.

As far as the quote, my mind is old and my brain fairly damaged during surgery. Not that I am complaining, I'd rather be alive without the power of speech than my bones returned to ground.

The newspaper article is
http://www.tworowtimes.com/news/physician-tells-ojibwe-family-anyone-wh…

If I misquoted, it was in kindness to add the phrase relating to cancer.

If you have a problem with the council's decision, than you should address the council. Just as if you have a problem with a quack in Arizona, expecting California to send in troops is inappropriate.

Also @PainRack, apparently no one in Florida or the American medical establishment can do a single thing to stop Brian Clements. If his conduct is so illegal, so illicit, so unforgiveable why have the EuroAmericans not stepped in to take care of one of their own?

Because EuroAmericans are not so different and sometimes trust superstition and various logical fallacies more than science. This keeps a steady stream of customers coming in the door.

I don't know how organized the practitioners of indigenous healing rituals and traditions are, but our EuroAmerican ones are as engaged in buying politicians and trying to get the legal system to allow them to do things they shouldn't as any other big business is. This is what keeps the doors open even when they are doing a lot of nothing or frank harm rather than curing.

There are those that fight the good fight to have scams removed from the market place and fight to get things regulated so you know that if you buy something it has everything on the label in it, in the amounts listed, with no substitutions of other herbs, contamination with various things no one wants to ingest or additions or other compounds including the science-based pharmaceuticals most people selling supplements will tell you to eschew.

Unfortunately, seems Big Supplement and the various other industries wrapped around them have a lot more money to buy government favors than the people who would like to see them controlled.

Do not mistake unregulated for safe and effective.

For an example of someone trying to bring the EuroAmerican Supplement industry to task see http://www.ag.ny.gov/press-release/ag-schneiderman-asks-major-retailers…

Expect the supplement manufacturers to gear up the manufacture of a grass-roots appearing campaign begging the legislature to refuse to make vitamin C a prescription drug and whatever all else is in the usual boilerplate used to fight any regulation of the supplement industry,

So sad

1) @ Renate #137
The vexing thing about this case is your question is a reasonable summary of the issue, but it's not an easy one to answer. Under Canadian law – which has a number of different elements in a mish-mash that's not easy to parse – First Nations people are kind of citizens of Canada, and kind of NOT citizens of Canada.

What 'we' are definitely not required to be is passive. Certainly, we may persuade or pressure the bands, take activist stances, work for this change or that.

But on the matter of whether, under the current law, the state must let First Nations parents ruin the lives of their children, the answer might be 'yes'. Emphasis on the "might".

This politically contested 'gray area' and the long history behind it, is why the actions of many of the parties are difficult to judge.

2) Re: #139, IMHO no one who knew these girls had leukemia and were being withdrawn from chemo by their parents deserves a pass: certainly not the parents, not Clement, not the hospital, not the bands, not the press, not CAS... nobody.

The mainstream press coverage in Canada has, for the most part dumped a disproportionate load of blame on the bands, been too easy on the parents – conflating their individual choices with the nations – and given TPTB at McMaster a pass.

Which is not to say the band's actions are not problematic in a substantive way. However, if Colonel Tom is too forgiving of the bands, then perhaps we should consider he's just one anonymous commenter on a science blog, providing a perspective we wouldn't get otherwise, one that might help us balance the scales closer to the truth of the situation.

3) @Painrack
You're making unsupported assumptions. What your exchange with Colonel Tom calls into my thought is that a large hospital like McMaster is a complex human organization, with all sorts of internal dynamics, contradictions, politics – different 'parts' going in different directions. It does not act or speak with a consistent single mind. It's anything but absurd to think that McMaster could house both staff with enlightened views on "integrating cultural practices and nursing" and staff who are "disrespectful towards traditional healing" – especially given that the former are nurses and the latter may be physicians in administrative roles.

Fwiw, I appreciate your comment for calling this to my attention. It's some comfort to think there are good people at McMaster who understood the sensitivities involved and sought the most pragmatic means to help Makayla and J.J. survive their devastating cancers. Alas, they did not win the day. This is not the moment to go into detail, but I have researched this fairly extensively, and there is very strong evidence that the McMaster administration and it's legal team utterly botched these cases.

With the thought of internal hospital politics in mind in light of your post, I now note how the news accounts show evidence of that between-the-lines. McMaster is keeping a very tight lid on this. The reporters get no interviews with staff, no direct quotes, almost no interaction even with hospital spokespersons. Only the official spokespersons speak, and for the most part only through prepared statements delivered by email. That could be just legal CYA, but it smells like someone has something to spin, if not hide altogether.

As a Native (from the USA, not Canada), I wanted to add my two cents to this topic. Well, it's really long, so it's more like fifty cents!

I think that many commenters here, including Orac, lack information about the cultural climate that allows this kind of tragedy to happen. I don't mean that as an insult. In general, very few non-Native Americans or Canadians have first hand experience with the nuances of native cultures, and the general way that we interact with mainstream society. That's not unexpected, as we're a relatively small group of people separated into even smaller tribes, each with their own ways. IMO there are a couple different factors at work here.

First, it's possible that the hospital in Makayla's case didn't know how to best handle interactions with her family. There are cultural differences in what's considered respectful, adequate, or appropriate. If the hospital had had someone available who was used to Ojibwe culture, they might have had better luck in educating her parents about the best path to take. That being said, in this case I don't think it would've helped. The fact that her family is evangelical Christian had WAY more to do with the negative outcome than the fact that they are Native Americans. They may have used Indian law to get the legal right to remove her from treatment, but the reason behind it seems to have been almost entirely religious. Let's not forget that there have been religious parents who have fled with their children rather than comply with legal medical requirements!

Second, is it possible that she really did have a worse response to chemotherapy than usual? I've seen some in the comments scoffing at the idea, but people of Native descent DO have different reactions to some kinds of medical treatment (e.g., metabolizing certain drugs at slower- or faster- than- expected rates). There is comparatively little information about how Natives respond to various medical treatments, as opposed to, say, Whites or Blacks. I'm speculating here, I'm not a doctor or scientist. Maybe the chemo hit her extra hard and her parents just weren't prepared for it.

This isn't to say that they should've taken her off it, obviously.

Third- commenters must realize that most Natives have an extreme distrust of governmental interference in issues that involve our children (and can anyone really be surprised by that)? The last Indian Boarding School closed in 1996- 1996! In not just living memory, but recent memory. As lately as 1978, 1/4 to 1/3 of all Native children were removed from their families and placed with non-Native adoptive parents. In the USA, the BIA even paid states to adopt these kids out to white families. Even now, in 2015, more than half of the states in the US do not comply properly with the Indian Child Welfare Act. (I'm speaking more of the US here because I don't know Canada's current situation as well, apologies.)

So, yeah, Native Americans will fight tooth and nail to retain all possible rights to their children, and to make decisions for their children. Some parents will inevitably misuse these rights, just as some parents in all other societies sometimes misuse the rights given them.

The solution isn't to take these rights away and endanger the lives and wellbeing of many, many more children. North American governments have shown (and continue to show) that they don't often have the best interests of Native children in mind. I think that asking (paraphrased) "is this freedom worth the life of a child?" to be a cruel way of looking at it when the ultimate concern is the lives of thousands more children.

Of course none of us want a child to die due to her parents' foolish beliefs. We also don't want our children stolen and our families ruined. Interfering with our sovereignty and rights to our own children has had disasterous, painful results- and still does. Thousands of native kids like Makayla died after being removed from their families, and it took over a hundred years to MOSTLY stop it in North America. It still goes on to a lesser degree, e.g. in South Dakota, where plenty of our kids are still being removed for subjective, culturally motivated reasons. Our need protect our children from the government isn't some libertarian fantasty or religious delusion or survivalist paranoia, it's a very real thing that we have direct, living experience with.

Honestly, challenging Indian child welfare laws wouldn't solve the problem anyway. It might've saved Makayla, though I don't know how much Canada allows for religious exemption. Far, far more parents withhold or withdraw medical care because of religious reasons, even if they have to run away to do it. There are plenty of non-Native religious people (in the US, at least) who use religious exemption to withhold medical care from their children, and who are even protected from prosecution if those children die.

The question boils down to, do the Treaties signed with the ability of self-rule and sovereignty still matter.

No, Col Tom. The question boils down to "Do parents have the right to condemn their child to a premature death by withholding/preventing them from receiving medical care, necessary for their continued survival?"

I agree that a lot of people seem to want to make this about the assertion of political soveriegnity, but they're wrong to sacrifice the life of a child to further their ideology.

@Sadmar, your comment about the attitude towards McMasters Hospital also flows into the doctrine of Observational Bias. I have little doubt that McMasters normally provides excellent service to their community, I have no doubt they save lives. However, this one act, this one antidotal act if you must , will be given more "weight" in peoples decisions for years to come. This, "problem of human nature" is one that consumes many of my twilight thoughts and dreams. I

In this, I was very pleased that one of McMasters' staff stepped forward and wrote some very respectful and calming words towards the "First Citizens". The reasons for mistrust run deep and the wounds have not yet turned to scars (!Hows that for woods mysticism!), even if not for the problems of the schools, the issues of tax, the war that is going to erupt over cigarette sales, the land grabs and insults. I do not want another Oka, at least most of my mind does not want another Oka.

As far as being too forgiving of the Kanien'kehá:ka, it was there responsibility to see for the care of the child under their control. They sided with the mother, and there was wide-spread support for the decision. The rez police, even shaved their heads to raise money for J.J.'s treatment. I doubt I can convey the amazement that caused me, for a Kanien'kehá:ka man to shave his head is something they would only normally do for the loss of a wife. To do this as an act of support, it was an act of valour that shames me the deeds that I have done. I don't expect you to understand, but that says it all. It does not matter, that it was done for the wrong reason, an act of honour none the less.

Sadmar, lastly. Your words on McMasters being a large organization and wide caution to transfer the act of one towards the acts of many. I was perfectly awake and aware during the replacement of my pacemaker/defibrillator. I chatted with the nice nurses as they shaved and scrubbed my chest, had a nice talk with the surgeon, turns out he and I had both been in Houston about the same time, we lived on the same street and odds are it might even have been the same apartment complex. I also mentioned that my mother had gotten her aortic aneurysm repaired at this very same hospital, and it might have been in this very same operating room. "Oh", said the doctor, "and how is she doing now?" "Oh", said I, "she got MRSA during the surgery, she spent the last 14 months of her life wasting away until it finally claimed her last year". Things got real quiet after that.

On the subject of the bands taking blame that rightly belongs on the shoulders of the individual parents...

Whatever Nahnda Garlow's statements have been, about what the Saults say MacMaster told them, I say be very skeptical. At best, this is a 'he said, she said' situation, and the more I look into this, the less I trust anything coming from Sonya and Ken Sault – like down to about zero.

One question about the "thrown in jail" allegation is 'when was it made?'. No one outside the family circle knew Clement was going to be involved until the Saults actually left for Florida. They had told McMaster and CAS they were going to pursue 'traditional medicine' but I suspect they were BSing all along. I suspect their angle was Jesus and Brian Clement the whole way:

In fact, their first public announcement that Makayla had leukemia and they had withdrawn her from chemo came at a revival meeting in Sarnia, ON held by West-Virginia-based faith-healing televangelist Ted Shuttlesworth, to whom the Saults had made available Makayla's being healed by Jesus in the hospital as an example of the curative power of The Lord. In other words, they appear to have pimped out their sick daughter to move up the Evangelical pecking order, and give Shuttlesworth a local hook for the Canadian audience. The National Post reported on an internet video of the revivial:

Working through Mr. Shuttlesworth, Jesus also “healed” several people of their deafness that night, as Mr. Sault later remarked admiringly on his Facebook page. He was also one of the visiting brother pastors called up by Mr. Shuttlesworth to join him in prayer. Makayla could be seen often, sitting with her mum and little brother...
The aboriginal question wasn’t raised as an issue until after the hospital called the children’s aid

It was only at that point the Saults claimed they would be treating Makayla with “Ongwehowe Onongwatri: yo:” a 'traditional medicine' with no documented tradition whatsoever, and not offered by any of the numerous First Nations clinics charted by the Canadian government to provide 'traditional healing' practices in an 'integrative' form along with conventional medicine.

The Saults are Ojibwe (by blood if not actual cultural practice) and I looked up the 'integrative' health programs of a couple Ojibwe clinics. They did not employ Native Healing as cures for any kind of disease, much less cancer. Rather, Ojibwe rituals were employed as spiritual healing, or what we might call psychological therapy – directed mainly at depression and substance abuse, with support mechanism for dealing with chronic physical disease available but not given that much emphasis.

So were the Saults ever really serious about Ongwehowe Onongwatri: yo:, what with their ultimate faith in Jesus and all? When the Brant CAS was processing McMaster's request for a protection order on Makayla, Sonya Sault told a reporter:

Are there going to be OPPs or CAS pulling into our house at any moment? And if that had to happen, we had to have a plan in place. Where does Makayla go? We hide her? We had to have that plan in action.

Now, why do I think Sonya's claim there was a 'Makayla Defense Force' ready to fight off any CAS apprehension attempt was just woofing, a smokescreen, and the "action plan" was always to have Makayla "go" somewhere off the reserve and "hide" where CAS had no jurisdiction. Say, maybe Florida?

On May 20th, 2014, Brant CAS director Andrew Koster met with the Saults and issued his decision that Makayla was not in need of protection, specifically citing the Saults use of 'Traditional Medicine' in explaining his rationale. That very evening, the Saults were at The Six Nations Polytechnic listening to Brian Clement give his pitch "All about Cancer and Conquering Disease with Living Foods." HHI doesn't openly promote faith healing, but this article on their website suggests their approach embraces the faithful well enough.

Not to actually advance a conspiracy theory, but if I was an investigative journalist trying to dig to the bottom of this story, I'd note that Ted Shuttlesworth, in addition to making regular appearances in Canada, also makes regular appearances in South Florida. I'd note that Clement also shuttles between Canada and South Florida. I'd wonder if the two men have ever met. I'd wonder if any members of Shuttlesworth's flock over the years have ever wound up at HHI to give the mighty healing power of Jesus a helping hand with some wheatgrass smoothies. And I'd wonder if it was Ted Shuttlesworth who first mentioned Brian Clement to Ken and Sonya Sault in Sarnia on May 7, 2014. Because Sonya Sault was talking about an action plan to have Makayla go somewhere to hide a week before the Saults met Brian Clement at the Six Nations Polytechnic. And once Koster had made his decision, they were completely free to stay on the reserve and treat Makayla with Ongwehowe Onongwatri: yo:, if that's what they had actually wanted to do.

Of course, a more generic term for 'faith-healing televangelist' is 'con-artist', and I can't help but wonder if when Ken Sault took the stage in Sarnia to pray with Ted Shuttlesworth he was a mark or part of the con. And I can't help but wonder if Ken and Sonya Sault pulled a con on the New Credit band, the Six Nations band, the Two Row Times, Andrew Koster and CAS with their claims to be following the secret and mystic 'tradition' of Ongwehowe Onongwatri: yo:, and a Canadian mainstream media primed to see everything in Brant in terms of tribal politics – and primed not to offend 'Christians' – rushed to the bait and bit the wrong apple.

"The aboriginal question wasn’t raised as an issue until after the hospital called the children’s aid, at which point Dawn Martin-Hill, director of McMaster University’s indigenous studies program who had reportedly tried to broker a deal between the family and the hospital, told the Hamilton Spectator that if Makayla was forced into chemotherapy, it would incite “the wrath” of First Nations across Canada."

Sadmar, while I do not doubt you understand much of what went on, and what is going on, I see you are a little too "white" on the idea of traditional religion. I doubt that most oldblood organization see that as an issue, after all, where the child and grandchildren of my first beloved one lives, they practice three different religions. If you follow the teaching of Handsome Lake, it does not mean you stop being a citizen of your nation, if you follow Christ, it does not mean you are no longer a citizen of your nation. Any more than being an atheist should mean a person is no longer an American citizen.

As far as the wrath thing, if this were the only incident that might be the case, but it is not. Anymore than the war of rebellion against the Crown was over a tax on tea.

Colonel Tom, you are still explicitly evading the question and changing the goalposts.

The quotes was not whether anyone using indigenous medicine should be thrown in jail. It's anyone who says it's effective.....
It's highly instructive because it highlights how easy miscommunication is.

Your old addled brain is still infinitely more receptive than a parent watching their daughter suffer from cancer. Given the misrepresent ation of medical facts, why should we trust that
1. M did suffer from irreversible cardiac and kidney damage,
1b . Said damage led to her death from stroke

2ndly, why are you so adamant about insisting that McMaster is hostile towards traditional medicine , when a much more plausible clause is that they're hostile towards fraudulent quackery as practised by Clements?

Since WHEN is traditional Indian medicine super expensive? The comments seems to be directed towards Clement quackery, why are you so adamanet in refusing to admit that the band has been misled and is deliberately using her native status to assert the parent desired choice of treatment? How on earth is wheatgrass juices and enemas part of traditional medicine?

It's annoying because in this particular example, Dr Orac had made it clear he doesn't care whether it's religious, cultural or ethnic reasons used to deny lifesaving treatment for a child, his position is that he's all on the child side .
Your attempts to derail the discussion via a thesis on decision making and racism ignores his position altogether.

Call him paternalistic but he freely denies the right for parents to choose quackery over science based medicine.

Painrack, a difference that makes no difference. If you suppose that all traditional beliefs are ineffectual than you've removed the possibility of a person to apply beliefs. The second follows upon the first.

Why is all of this about "traditional medicine", we don't see this as some arcane inquiry into the ability of a TaKa to cure cholera in the 1700's but rather the modern struggle for self-determination. My impression is you and others wish to fixate on a single mother's ability to make a poor decision, we see this as an assault upon the government that gave J.J.'s mother approval to pursue her course of action. Do you think that First Citizens run around the Rez like a bunch of kindergarten kids? No, there are governments. These governments have the authority to rule over their own citizens. You don't like the ruling of J's government, so you want to impose your great white wisdom.

Dr. Orac says he does not care about religious, culture, etc, as long as they decide to act like him, and follow the way that he knows is best. He does not care, as long as we do what he says. Oh my, that sounds so enlightened of him. Let him fix the killers in Florida.

You do realize what an offensive term you used with "paternalistic" when applying it to people of the Six Nations? I will assume the irony of that word escapes you, and I will take as little offense as possible.

@Sadmar. A good article came out recently

https://www.tworowtimes.com/opinions/columns/scone-dogs-seed-beads/maka…

https://www.tworowtimes.com/opinions/editorial/haudenosaune-people-awar…

Just for the record, I attempt to make it clear that I am neither a traditional oldblood nor a Euro. They say a man that tries to straddle two canoes is bound to drown. However, there are some cultural prejudices that I carry, one being the idea of confronting a person during the grief period just seems so dang wrong to me. It hurts, it strikes me as so wrong that I lose objectivity.

Then I read about the way the Euro culture treats their children.

http://www.tworowtimes.com/news/regional/justice-comes-for-marissa-whal…

When they were asked why the tortured child was buried on Six Nations land, there response was very telling. Should I be offended that such terrible people would also have misconceptions and prejudice against the people of the Longhouse, should I be offended at the racial hatred thrown at First Citizens in the comment sections of many of the Canadian papers, people assuming because the body was, "desposed" of on Six Nations land that they had something to do with this. To not ever allow the dead a decent burial, to not give them even the smallest token in their grave, what kind of people can do such a thing. I give my cats a token, and make sure the animals do not dig up their flesh, yet they'd not do the same for her child.

#ShutDownCanada

Feb 13, 2015

If you suppose that all traditional beliefs are ineffectual than you’ve removed the possibility of a person to apply beliefs.

Not at all. If the patient is a competent legal adult they can choose whatever treatment from SBM to alternative or traditional, effective or demonstrably ineffective, that they accept as compatible with their beliefs.

Is it jsut the first's nations soverignity context that informs your opinion here? Would you argue that a parent has the right to choose not to treat their minor child's Type I diabetes with standard of care insulin therapy, etc., but instead to rely on(wholly traditional) intercessory prayer and laying on of hands and oppose intercession by state child welfare agencies when made aware of such a situation?

70% Sovereignty. If this were a "non-citizen" oldblood I would feel completely differently.

That may be one of the differences that separates our, "reality" is that one of the Six Nation governments failed to protect one of its citizens. She had her family, she had her clan, and she had her government to protect her interests. I think they were wrong, but I acknowledge their rights for self-determination.

The media reports are so biased and just arrogantly eurocentric. I know that Ronald Reagan and George Bush were wrong, but I followed the chain of command none the less. Even when that required me discharging those in my command for the "crime" of being homosexuals. Yet that is another day and another court-martial.

20% is the deeply engrained, and correct, value that a mother and her extended circle of elders and peers, have both the best interest and the right on these matters. To this end, I respect the right of my wife to have the majority opinion of all matters to the child. Even if my wife and daughter are EuroAmericans.

I see this question being argued elsewhere here, are children the property of the parents or the property of the state. Well, absolute principles are absolutely wrong. The "state" here is her First Nation, and I agree that her "state" does have right to intercede for her behalf.

5% is Orac strikes me as exactly the same type of arrogant horse pie maker as the Obstetrician that almost killed this blessed child of ours, because he didn't believe we knew the conception date. I really know cause it was on my desk calender pad, also I wrote it down.

should I be offended at the racial hatred thrown at First Citizens in the comment sections of many of the Canadian papers, people assuming because the body was, “desposed” of on Six Nations land that they had something to do with this

"Paramedics respond to the Emerick Ave. home with police and are told by McKay and Hill that one of Hill's children was choking on cereal. They check the boy out and leave.

"Later that night, Hill and her sister Amanda Dipota, who are both native, drive with Roseanne Whalen to Six Nations territory in Ohsweken, near Brantford to bury Marissa. They borrow a shovel from Dipota's friend Brian Smith who shows them a secluded spot to bury a 'dog.'"

http://www.stcatharinesstandard.ca/2014/04/08/marissas-path-to-tragedy

I don't see her name on the roles.

I don’t see her name on the roles.

Well, Hill and her sister seem to have been playing the part.

A bunch do.

A bunch do.

Are you thus asserting that Hill (the killer and direct abuser) and her sister are "Euro"?

All I see here Colonel Tom, is you waving the racial flag to defend and evade questions and positions you were asked to clarify.

To wit, you claimed that she was poisoned by chemotherapy And this led to her death.Where is the evidence of this?

You claimed that McMaster was disdaining and arrogant and dismissive of traditional Medicine , with the subtext that they refused to intergrate such care with standard care, and refused to follow up care. Again, where is the proof of this? It goes against every norm of medical behavior. And we DO know that she still received supervision from medical authorities because of JJ, when the doctors there testified that M leukemia had relapsed .

We know that M didn't reveieve effective treatment and you have been evading this question forever. why is it that M had the right to receive ineffective,negligent medical care or even outright fraud ? Are the gurantees and Rights extended to every other Canadian child to be denied to M because she's First Nations? I suspect I know your answer, just give it to us without the faux outrage over sovereignty rights or how we are assuming that she was not loved and protected by her band or media bias.

Pain Rack, have you not read the articles and press releases put out by her council? You do realize that independent monitoring is being performed by for Eksa:ah not by McMasters but by Toronto Sick Kids Hospital. You dispute facts and then expect me to defend. That is almost always the sign of a person that has no desire to listen, when you argue that everything that is given is wrong. You claim that McMasters could do no wrong, and everything the oldbloods say is a lie.

As for the last question, ah, rights. This supposed right of every Canadian child to some standard of care. Just as every Canadian child has a right to a good school, clean water. Of the right to justice, or the right to practice their own faith, or even the right to have due process of law in a historical land dispute, say Oka? Such fine rights.

To wit, the rights of a Longhouse child and a New Credit child are under the oversight of their governments. Thus they have the same level of protection as in child in Canada. What you apparently wish, is that when you don't like the decision of a child's government than you can go running to another provincial government to overrule.

Now, had the federal Canadian government gotten involved, I'd likely be swayed.

https://www.tworowtimes.com/news/local/makayla-sault-alive-well/

Tonight (Monday, Feb 6) at 11 PM EST, the NBC affiliate in West Palm Beach, WPTV TV, is doing a story on Brian Clement and Hippocrates. The story should be on their website by tomorrow (WPTV.com).

So ultimately colonel Tom, you have no evidence to assert that she died because chemotherapy damaged her organs and you refuse to hold her government accountable for her death, because the First Nations government chose to be frauded by a white American.

Duly noted.