J.J. has a chance to live!

Over the years I’ve written about a lot of topics. After all, I’ve been at this for more than a decade now, and I still grind out four or five posts per week, with only occasional breaks for vacations or medical or scientific meetings. Topics have included science-based medicine, antivaccine nonsense, topics of general skepticism, and of course medical quackery, among others. There’s one type of recurrent story I’ve been commenting on periodically since 2005, when I began by discussing the case of Katie Wernecke, and these include stories of children with cancer who do not receive the therapy that they need, usually because their parents balk at the toxicity and, more often than not, because the parents—and sometimes the child, too—are choosing quackery instead of effective medicine.

The names of such children that I’ve blogged about started with Katie Wernecke but certainly did not end with her. For example, they include Abraham Cherrix, whose choice of quackery over effective treatment for his lymphoma inspired a truly awful law in Virginia known as Abraham’s law that allows children 14 and over with terminal illnesses to choose quackery instead of medicine and that, when last I learned anything about him, had left him with recurrent lymphoma that keeps popping up. Others include Daniel Hauser, Jacob Stieler, an Amish girl named Sarah Hershberger, and, most recently, a girl who was only identified as Cassandra C, who is being compelled against her mother’s wishes to undergo chemotherapy for her Hodgkin’s lymphoma and fortunately is doing well. Many of these stories have a depressing similarity to them. A child is diagnosed with cancer and undergoes her first course of chemotherapy. The side effects alarm the parents—understandably. If the parents are woo-prone, that can lead to rejection of further chemotherapy, particularly if the tumor has gone into remission, given that it can be really hard to explain why prolonged courses of chemotherapy are needed. These stories usually either end with some agreement being reached that allows the child to pursue woo with conventional therapy.

Such was the case with a particularly thorny couple of cases that involved aboriginal rights in Canada, the confusion of parental rights with aboriginal rights, and some particularly troublesome history and political considerations. The first case was the case of JJ (the name used in the news stories), an aboriginal girl in Canada with lymphoblastic leukemia whose parents took her case to court to allow her mother to take her to undergo “natural healing” under the care of a man named Brian Clement, who runs the Hippocrates Health Institute (HHI) in Florida. Unfortunately, as I discussed, the HHI is a haven of cancer quackery on steroids, much of it based on claims that wheatgrass (including wheatgrass enemas) has magical curative powers. Even though Clement’s quackery had nothing to do with traditional aboriginal medicine, Ontario Court Justice Gethin Edward, who belongs to the same Six Nations band as JJ, ruled that the parents could choose Clement’s quackery instead of chemotherapy, all in the name of “aboriginal rights.” At the time, I characterized the decision as ruling that the parents can let their daughter die.

So I believed at the time. I knew that after the brief course of chemotherapy that JJ had received, recurrence was virtually certain. Not surprisingly, almost right on schedule, JJ’s lymphoblastic leukemia recurred. According to a recent news report, it recurred in March, and JJ is receiving chemotherapy again. I only hope it isn’t too late. As I’ve explained before, a big part of the reason why I get so worked up over these cases. Besides hating the implicit assumption behind such rulings that parents apparently own their children when they do not, I know that the first, best shot at curing a cancer—any cancer, but particularly childhood cancer—is the first shot. Pediatric oncologists learned this the hard way decades ago. Although you wouldn’t know it from what the quacks say, pediatric oncologists don’t treat children with multiple courses of chemotherapy over the course of up to over two years because they like torturing children with chemotherapy toxicity. They do it because they learned very quickly that, although a course of chemotherapy can often produce a complete remission rapidly, cancers like lymphoblastic leukemia would rapidly recur and kill the patient. Worse, recurrent leukemias are harder to treat, and the odds of success go down. Clearly, that’s what’s happened with JJ, but the good news is that she is likely still potentially savable.

More interestingly, Justice Edward has, with the cooperation of all parties involved in his original ruling, has walked back its broadness, its putting aboriginal rights and parental rights over the rights of the child to effective medical care:

The clarification of a controversial court ruling that allowed the mother of an 11-year-old First Nations girl to pull her out of chemotherapy says the best interests of the child are “paramount,” but traditional medicine must be respected.

It is a “significant qualification” of Ontario court Judge Gethin Edward’s November 2014 ruling, according to one legal expert, which means the child’s well-being has to be balanced against rights to traditional medicine.

Nick Bala, a law professor at Queen’s University, says the clarification “walks back” the original ruling that put First Nations constitutional rights as the major factor to be considered in the care of the child.

The clarification, read in a Brantford, Ont. court Friday afternoon, comes with news the child restarted chemotherapy in March when the cancer returned after a period of remission.

From my perspective, this is the sort of compromise that could have and should have been arrived at the first time around. Why it wasn’t, I still don’t understand. Regardless of my distaste for non-science-based treatments that will not affect the outcome of a patient’s cancer, if what it takes to get the parents to have JJ undergo effective chemotherapy that reportedly had about a 75% chance of eliminating her cancer for good, then I swallow hard and let it happen. Unfortunately, although I’m not a pediatric oncologist, JJ’s chances of long term survival are now probably significantly less than 75% because she didn’t continue her chemotherapy after the initial course put her into remission and has now relapsed.

It still irks me that the first time around the judge seemed to conflate Brian Clement’s quackery with aboriginal medicine in his decision in that his decision was that JJ’s family had the right to use aboriginal medicine, not that they had the right to fly to Florida and subject JJ to the quackery of a man whose wheatgrass enema treatments have about as much to do with aboriginal culture as Eminem. Yet almost no one that I saw from the aboriginal community actually pointed out that basic fact, so intent were they to claim this decision as a victory for native rights. The other thing that still irks me is how little consideration was given the first time around for the good of the child. All the highfalutin rhetoric notwithstanding, what the case came down to was the right of the child to effective medical care versus aboriginal rights and parental rights? Guess which one? It was the same as it almost always was: Parental rights trump the rights of the child in Canada, just as they almost always do here in the US. Only this time, there was the ugly history of oppression, particularly the history of residential schools to which aboriginal children were sent after being taken away from their families in order to assimilate them into Canadian culture, overlaid on the usual battle between parental rights and the rights of the child.

Still, at least JJ has a chance, and it’s better late than never, I suppose, that Justice Edward and other parties in the case other than McMaster Children’s Hospital and the Ontario Attorney-General finally realized that the JJ’s right to effective medical care matters enough to trump the right to choose quackery:

Bala called it a “significant clarification” that recognized the earlier decision had not referred to the child’s rights as being paramount.

He said this decision makes it more of a balancing act between the child’s best interests and aboriginal rights, and that courts “very rarely” clarify decisions.

“The aboriginal rights are one factor to be considered, but not the only factor,” Bala said. “This is a significant qualification of the prior decision.”

Paul Williams, the lawyer for the First Nations family, said the clarification prevented the previous ruling from being interpreted as an “absolute” that only aboriginal rights would be considered.

“The right to use traditional medicine is part of the child’s best interests. That was clarified, it wasn’t changed,” Williams said. “I think it was a fear of absolutism. I think it was clear that nothing was absolute.”

Well, duh. Justice Edward’s ruling was “interpreted” as an absolute that only aboriginal rights would be considered because that’s how it was written:

What Edward did was add a crucial “clarification,” on consent of all counsel, that indigenous does not take precedence over conventional and scientific. “Implicit in this decision is that recognition and implementation of the right to use traditional medicine must remain consistent with the principle that the best interests of the child remain paramount. The Aboriginal right to use traditional medicine must be respected and must be considered among other factors in any analysis of the best interests of the child, and whether the child is in need of protection.”

Edward had never stated, in November, that the family shouldn’t pursue chemo if they chose. But he did say they didn’t have to do so, a conclusion that sparked intense controversy.

Now Edward tells us that he always knew, instinctively, the parents would do what was best for J.J. He took that comforting view from the testimony of an intake manager with the Brant child welfare agency, in which she quoted the child’s mother as saying, “I will not let my baby die.”

Edward told court yesterday: “Implicit in those seven words was that, regardless of what this court said or did, or anyone else for that matter, what was paramount for the mother was what was in her daughter’s best interest.”

This is a manifestly dumb argument—one of the dumbest I’ve ever heard in a case like this. Virtually every mother who refuses chemotherapy for her child has the best interests of the child at heart. Every mother who refuses chemotherapy loves her child and wants her child to live. That’s not the point in cases like this. The point is that what the mother was doing was clearly not in the child’s best interest by any reasonable standard, no matter what her motivation might have been. Heck, parents who belong to religious orders that eschew all medical care to the point of allowing children die preventable deaths of diabetic ketoacidosis or treatable pneumonia believe they are doing what was in their children’s best interest. The end result is still dead children. If JJ’s parents and Edward hadn’t finally seen the light, that would have been the end result for JJ. It might still be.

Edward’s ruling was a ruling that delayed effective treatment for JJ for five months and allowed her cancer to relapse. Never mind that JJ wasn’t being treated by aboriginal healers at all, but rather a white quack from Florida! If JJ ultimately dies, it will have been the ruling that let that happen. After all, we’ve already seen what happened when a parent stuck with Brian Clement’s quackery to treat her daughter’s lymphoblastic leukemia. I’m referring, of course, to the case of Makayla Sault, whose mother took her to HHI and who died in January of her leukemia, very likely unnecessarily given that she had a good chance of long term survival with proper treatment. It’s a good thing that Justice Edward was given the opportunity to “walk back” his ruling. It’s not a good thing that it apparently took JJ’s relapse to do it.

But what of Brian Clement? As glad as I am that JJ now has a fighting chance, I don’t recall having mentioned the bad news about Brian Clement here on this blog. I was optimistic a couple of months ago when the State of Florida finally did something about HHI, ordering Brian Clement to stop practicing medicine. Unfortunately, it didn’t last long. By mid-March, the State of Florida had backed down, and dropped its case against Brian Clement, who is free to continue to ply his considerable quackery on unsuspecting desperate cancer patients, just as he had been doing for more than two decades before. Truly, Florida is a good place to be a quack.

No doubt Clement has already visited Canada again to try to recruit the next JJ and Makayla Sault.