� By Peter Chowka
(September 15, 2003) The more things change, the more they remain the same.
Despite explosive growth in the public's use of alternative medicine (AM) and notable advances in AM's official acceptance, it is still illegal in most states for parents of sick children to eschew conventional medicine in favor of less toxic, innovative treatment options.
In scores of cases that have gained public attention during the past quarter century, the scenario is almost exactly the same: A minor child is diagnosed with a serious illness, often a form of cancer. After careful consideration, and usually after an experience with some conventional treatments which are deemed by the family to be problematic, the family chooses to explore or employ an alternative approach. But state authorities, usually alerted to the situation by medical doctors or hospital officials, quickly become involved - ordering the parents to have their child treated with conventional allopathic therapies, or else face criminal prosecution and the child being taken away from them for forced treatment.
In recent times, the highest profile case of this kind involved Thomas Navarro.
The Navarro family's struggles for medical freedom even figured in the 2000
Republican Presidential primary race when candidate
Alan Keyes, PhD took up their cause.
In the summer of 2003, another patient's case achieved regional, and some degree of national, attention. And with fall imminent, it isn't over yet.
Last June, authorities in Utah targeted the parents of Parker Jensen for
scrutiny and prosecution after the 12 year old boy received a diagnosis of
Ewing's sarcoma, a relatively rare form of cancer. Parker's parents, Daren and
Barbara Jensen, failed to follow doctors' orders to immediately begin
chemotherapy. Instead, they researched the literature and decided to take
Parker to see noted alternative clinician
Stanislaw Burzynski,
MD, PhD in Houston, Texas.
Meanwhile, Utah officials moved quickly to drag the family into court. On June 16, after Parker reportedly missed one doctor's appointment, a former physician at the Primary Children's Medical Center in Salt Lake City contacted the Utah Division of Child and Family Services (DCFS) and filed a medical neglect claim. The next day, the DCFS petitioned the juvenile court to hold an expedited hearing in the matter. On June 20, Parker's parents were in court facing a judge.
According to one news account, Daren Jensen was "surprised when the state never asked for his side before his family faced the judge. 'I was doing it right, before one doctor took me straight to court because I disagreed with him,' Daren Jensen said."
Parker had been diagnosed with cancer on May 19. The family felt that they were being given little time to make informed decisions about their son's care and no options other than chemotherapy - and that meetings with doctors were "threatening." Their requests for further tests before chemotherapy treatment commenced were considered inappropriate.
The judge in the case ordered chemotherapy to begin on August 8. The Jensens, however, left Utah before that time and went to Pocatello, Idaho to visit family before they planned to go to Houston to see Burzynski, who they hoped would perform more tests on Parker. The judge ordered Parker to be placed in state custody on Aug. 8 after the Jensens' lawyer told the court that the family had not started chemotherapy. On Aug. 15, kidnapping charges against the parents were filed by prosecutors. Barbara Jensen and Parker went underground in Houston, while Daren, who was arrested on the kidnapping charge after a car accident, stayed in Pocatello to fight extradition back to Utah.
In any case, Burzynski's hands were tied clinically. After several decades of battling the medical Establishment, the internationally known innovative clinician is forced to work under strict oversight and close regulation by the Food and Drug Administration and cannot accept patients for treatment with his antineoplaston therapy unless he is conducting an FDA-approved clinical trial on the kind of cancer the patient has. Currently, Burzynski does not have a trial underway for Ewing's sarcoma.
On September 10, Daren and Barbara Jensen were arraigned on felony kidnapping charges. There are reports that both sides are seeking a plea agreement. It's likely that part of the agreement will entail Parker receiving standard chemotherapy.
I am reminded at this point of something my late father used to say: "You can't fight city hall."
Medical Freedom: An Impossible Dream?
It is useful to consider some comments made about earlier cases involving medical freedom of choice for families and children. Speaking about the Navarros during a nationally televised debate on January 10, 2000, Alan Keyes said, "Responsible people should be allowed to make responsible choices. They should not have the government standing in the way. . .This isn't just a debate over abstractions. It is a debate about how we can restore to the American people those liberties and that sense of responsibility which will not only save the life of this child but save the life and future of this country."
In the case of the Navarros, the FDA blocked Thomas's access to the Burzynski therapy, the family's preferred treatment option - until after all conventional therapies had been tried and failed and the child was considered "terminal." Thomas died in December 2001 after an odyssey in which he received both conventional and alternative treatments, having been denied access early on to the Burzynski therapy.
While courts in the U.S, such as a New York State appellate court in 1987 (in the case Schneider vs. Revici), have upheld the right for an adult "to avoid surgery and chemotherapy. . .[and] to go outside approved medical methods in search of an unconventional treatment," the situation is more complex when minor children are involved. Although one attorney commented in 1979, "It's proper for courts to determine if parents are competent - it is not proper for the courts to make medical decisions," individual states and the federal government have often intervened to prevent parents from choosing alternative therapies for their critically ill children.
The highest profile medical freedom case in the past three decades, even more prominent than Thomas Navarro's, involved Chad Green, a Massachusetts boy who was three years old when he was diagnosed with leukemia in 1977. When Chad's parents, Jerry and Diana, opposed chemotherapy and sought natural treatments for their son, Chad was made a ward of the state and compelled to undergo chemotherapy, some of it experimental at the time. In January 1979, the Greens fled the country with Chad for Mexico, where the boy had access to alternative therapies. The story of the familys medical and legal odyssey was front page news for months, and the Greens ran the risk of being arrested for "kidnapping" their own child if they re-entered the U.S.
In that case, after Chad died in October 1979 (of a heart-nerve blockage according to a pathologist associated with the University of California at San Diego), then-Governor Jerry Brown (D-CA) went on the record supporting Jerry and Diana Green's actions and said that he would not extradite them to Massachusetts from California. In December 1980, in a deal with prosecutors, the Greens returned to Massachusetts and offered a public apology for flaunting a court's order not to remove their child from the state. In exchange, all charges against them were dropped.
It's hard to imagine now, but until the early 1970s established legal opinion tended to favor familieswishes in cases concerning the rights of parents to refuse conventional medical intervention, or to choose an unpopular alternative, for their children. Dr. A. D. Kelly, secretary of the Canadian Medical Association, for example, wrote in the CMA Journal (February 18, 1967), "Parents of minors. . .possess the right to interpret the will of the patient, and we should accept and respect their wishes." In 1968, a council of judges in the U.S. wrote in "Guides to the Judge in Medical Orders Affecting Children" (Crime and Delinquency, April 1968), "If there is a choice of procedures. . .the doctors must take the medically riskier but parentally unobjectionable course."
In 1979, at the height of the Chad Green case, I asked noted Massachusetts attorney Benedict FitzGerald why medico-legal opinion seemed to be changing. "The courts," he said, "have attempted to take over and be the final arbiters in the medical field, because the medical people have become more powerful. They'd like to control the treatment of of everybody, even people who are not minors."
Today, over two decades after the Chad Green case and the observations of FitzGerald, the medical Establishment, working hand in glove with state and federal governments, has more power than ever. Meanwhile, the larger philosophical or ideological issues raised by these cases remain unresolved, as indicated by the situation now involving the family of Parker Jensen.
As I wrote in early 2000 about the Navarro case, "Unless the Navarros are granted what they believe are their rights as citizens to use the treatments of their choice, and these rights are finally guaranteed and protected for all Americans, other families are sure to experience similar traumas in the future, on top of the shock that accompanies a clinical diagnosis of serious or terminal childhood illness."
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