Two young victims of alternative medicine

About six months back, I wrote about Katie Wernecke, a 13-year-old girl diagnosed with Hodgkin’s lymphoma last year, whose parents fought with Texas courts to let them take her to Kansas to receive high dose vitamin C therapy rather than the chemotherapy and radiation therapy that she needed to have a chance of beating her cancer. Events have suggested to me that an update is in order. It turns out that Katie is still alive, although it is unclear how she is doing. Her family has apparently taken her to an undisclosed cancer treatment center out of state, where she is getting more altie “cures” other than the high dose vitamin C that she got late last year. One witness, her school’s assistant principal, reports that before her departure to this “undisclosed location,” she seemed “weaker, more tired and wasn’t acting herself.” Her father has been quoted as saying, “I really can’t say anything because it could jeopardize her treatment.” In addition, his further elaboration on her family’s blog sounds to me as though he’s whistling past the graveyard:

On a condition of receiving treatments there can be no publicity at all. That is why there has been no communication on this website for months. We cannot tell you what we are doing or where we are at simply because the doctors and hospital would refuse to continue treatments. Katie’s tumor grew in March but now is receding with the new treatments.

I have to wonder: What kind of “treatments” require the family to remain silent or risk the doctors’ refusing to continue? Are the treatments illegal? Why on earth would the doctors and hospital demand the family’s silence? After all, the Werneckes already won their court battle and can essentially have Katie treated any way they want without much fear of her being taken away from them again–even if they end up bankrupting themselves (as I fear they are doing) paying for unproven “treatments” and are forced to hawk various books on alternative medicine and ask for donations to cover medical treatment.

It’s all so sad and could have been prevented.

This update brings me to the event that led me to look into what has happened to Katie Wernecke since November, namely my learning that she now has company. In Virginia, a 15-year-old has taken the first steps down the same path as Katie:

NORFOLK – Fifteen-year-old Abraham Starchild Cherrix never intended to challenge the medical establishment when he refused chemotherapy earlier this year.

He simply believed the treatment was poisoning him, rather than saving him from Hodgkin’s disease. What he wanted was a more natural approach, which he sought through an alternative treatment clinic in Tijuana, Mexico.

That decision has led to a courtroom battle, accusations of parental neglect and the possibility of being removed from his Chincoteague home.

A judge earlier this week ordered Abraham to receive diagnostic tests to determine the status of his disease. On Friday, though, the tall, lanky boy refused to abide by the order. After showing up at Children’s Hospital of The King’s Daughters in a crisp white shirt and blue tie, he rejected the test.

“I think my body has taken enough, and it shouldn’t have to take any more,” he said.

Abraham’s case has brought into public view some difficult questions: What are parents’ – and more expressly, children’s – rights in choosing medical treatment? When is alternative medicine helpful or harmful? And who has the right to intervene when the answers to such questions are in dispute?

It all began in February, when, after an initial round of chemotherapy for Hodgkins’ Disease, tests showed that there was still residual cancer, and oncologists recommended another round of chemotherapy, followed by radiation:

Doctors said the boy needed more chemo, and radiation therapy to attack tumors in his chest and neck.

That’s when Abraham dug in his heels. He and his father did some research and decided to try a treatment in Tijuana that includes an organic diet and herbal supplements. Soon after, his case was reported to a child-abuse investigator at the Accomack County Department of Social Services, who asked a judge to order that the teen continue conventional treatment.

At a Tuesday hearing, Judge Jesse E. Demps ordered tests to see whether Abraham’s cancer had worsened. He also filed a temporary order saying the parents had “neglected or refused to provide necessary treatment” for the boy. He ordered that joint custody be shared between the parents and Social Services to ensure proper care.

The therapy that the Cherrixes have chosen for Abraham is a doozy. They’ve decided to go to The Association for Research and Enlightenment. This Association was founded by a psychic healer named Edgar Cayce, who was known for falling into trances and giving readings on topics as varied as Hitler, astrology, the existence of Atlantis, ESP, ancient Egypt, and others. Through Cayce’s Association, Abraham and his father have settled upon a dubious treatment known as the Hoxsey treatment.

Basically, the Hoxsey treatment involves herbal concoctions popularized by Harry Hoxsey. Different varieties exist, including an “internal” treatment and external treatments with various pastes made up of some of the components of his treatment (usually used for skin cancers or tumors that can be palpated through the skin). Hoxsey claimed that the formula had been passed down from his grandfather John Hoxsey to his father to him, after his grandfather had mixed together grasses and flowering wild plants growing in a pasture where one of John Hoxsey’s horses grazed daily. The horse supposedly had a cancerous growth that went away, and Hoxsey thought that it was due to the plants upon which the horse grazed. He took plants from the pasture, mixed them together, added some ingredients for home remedies for cancer at the time, and–voilà!–he had what he thought was a cure for cancer. Many decades later, Hoxsey’s grandson described how this remedy supposedly worked thusly:

“It follows that if the constitution of body fluids can be normalized and the original chemical balance in the body restored, the environment again will become unfavorable for the survival and reproduction of these cells, they will cease to multiply and eventually they will die. Then if vital organs have not been too seriously damaged by the malignancy (or by surgery or irradiation) the entire organism will recover normal health.”

He [Hoxsey] also did not claim to know how or why his herbal cancer treatment worked, but he maintained that it “corrects the abnormal blood chemistry and normalizes cell metabolism” by “stimulat[ing] the elimination of toxins which are poisoning the system.”

There’s only one problem. There’s no good evidence that the Hoxsey treatment has any antitumor activity. Although some of the components have been reported to have mild antitumor activity in cell culture and animal systems, others have been reported to promote tumorigenesis. In any case, there is no evidence that the Hoxsey treatment as given has efficacy against any cancer. Indeed, the NCI investigated Hoxsey’s case series, and, as is frequently the case with such altie reports, concluded that there was inadequate information recorded to make any conclusions at all. The FDA investigated 400 cases whom Hoxsey claimed to cured and found not a single case of a bona fide cancer cure (Semin Oncol 1979;6(4):526-535). Indeed, in 1956, the FDA Commissioner ordered the posting of a “Public Beware!” warning against the Hoxsey treatment in U.S. Post Offices all over the country. And, as quacks frequently do, Hoxsey went to his grave claiming he was being “persecuted” by the “establishment.”

Until her death in 1999, Hoxsey’s longtime chief nurse Mildred Nelson continued Hoxsey’s legacy and administered his “treatment” in Tijuana, claiming an 80% success rate (as mentioned in the original article above). Of note, Nelson believed that a “bad attitude” was usually responsible for her “20 percent failure rate” she reported for the Hoxsey treatment, with a patient’s strong belief that the treatment is going to lead to recovery being the best predictor of success. Convenient, isn’t it? Those pesky patients who have the temerity to die in spite of the Hoxsey treatment? Well, it was obviously their own fault! They didn’t believe enough!

After Nelson’s death, her sister took over running the Bio-Medical Center in Tijuana, which continues to give the Hoxsey treatment, sometimes in combination with dietary supplements, chelation therapy, or laetrile. The really sad thing is what alties themselves say about the Bio-Medical Clinic:

An unpublished pilot study of treatment results at the Bio-Medical Center (and the Livingston Clinic in San Diego, CA, an alternative treatment center founded by the late Virginia Livingston-Wheeler, MD), conducted by the University of Texas at Houston’s Center for Alternative Medicine Research, is currently being circulated for review. The study examined a series of Bio-Medical patient records from 1992. It was funded by a grant from the National Institutes of Health (NIH) through the National Center for Complementary Alternative Medicine (NCCAM) and the National Cancer Institute (NCI).

According to the study, at a point five years after a new group of Bio-Medical Center cancer patients began their treatment in 1992, 11.4 percent of them were alive, 34.9 percent were deceased, and 42.9 percent were lost to follow-up. These results are conservative, but, in contrast to the outcomes of most standard forms of cancer therapy, seem promising. The inability to evaluate a greater number of patients and to contact more of them after five years in order to assess outcomes prevented any definitive conclusions about the Hoxsey Therapy’s ultimate viability from being reached.

No kidding.

Only 11.4% of the patients could be confirmed to be alive and 43% were lost to followup (which, in cancer studies, all too often means that most of them are probably dead)? And that’s a good result? In comparison to what? It’s impossible to know whether this result is good, bad, or indifferent without breaking patients and results down by types and stages of cancer, as well as the Karnofsky or ECOG performance status of the patients when presenting, and whether they were being treated for new or recurrent cancer. Absent that information, the results reported are utterly meaningless.

What really infuriates me about cases like Katie Wernecke and Abraham Cherrix is that in teens Hodgkin’s disease is an eminently curable cancer. Indeed, both Katie and Abraham could have expected around an 85% chance of surviving their cancers with appropriate chemotherapy and radiation. The siren call of quackery (in the form of more “natural” treatments) is luring these young patients away from known effective treatments with a high probability of saving their lives. Indeed, in Katie’s case, delays in therapy because of her parents’ doubts about conventional treatment arguably drastically decreased her chances of a cure even with the best conventional treatment medicine has to offer. Adults, of course, are perfectly free to choose snake oil over proven therapy if they so desire. They are presumed to be mature and responsible enough to weigh the options and pay the price for their bad choices. However, we as a society have decided that children should not have that same freedom, because they are not yet capable of making such decisions or taking the consequences. We can certainly argue over exactly what age is the appropriate cutoff–is 18 too high or low, for instance?–but there is no disagreement that, below a certain age children must rely on their parents or guardians to decide such matter for them. The question then becomes: What do we as a society do when the parents choose a course for their children that is so obviously not in their best interest? Despite my libertarian leanings, I see situations such as these, where the parents have made choices so obviously harmful to their children, as one of the few types of situations where it is appropriate for the state to step in and overrule the parents’ wishes–and, if necessary, the child’s wishes as well. These cases are no different to me than cases in which Jehovah’s Witnesses refuse to allow their injured children to receive life-saving transfusions. (Yes, in many cases the situation is not nearly so clear-cut that the parents are doing their children harm, but neither of these is one of those cases.) In Katie’s case, the state lost, I suspect because her odds had become so poor that the court thought that she would be better off spending her last months happy with her parents, even if they chose ineffective “alternative” medicine for her. However, it’s not yet too late for Abraham.

Sadly, so desperate are the parents to believe in the quackery that they have chosen that they delude themselves that the treatment is working. In Katie’s case, such self-delusion manifests itself as her father’s glossing over the fact that her tumors grew in March and that the assistant principal at her school is concerned that she isn’t looking so good. In Abraham’s case, it’s very similar:

In the time between the end of chemotherapy in December and April, the lump on Abraham’s neck did get bigger, but the family thinks that’s because the new treatment has not yet taken effect. His parents said the growth hasn’t gotten bigger in the past two weeks.

“Abraham said that God has told him this is his test,” Jay Cherrix said. “I think that, too.”

If Abraham dies from his enlarging tumors (as he will if he does not receive the additional therapy he needs–and soon), does that mean he will have failed God’s test? Or does it mean that he will have succeeded because he was faithful enough to follow the Hoxsey treatment, even though doing so eliminated his chance of long term survival?

I hope we don’t find out, but, sadly, I probably hope in vain.