Kids and Cancer Care: The Daniel Hauser Controversy
A judge ruled yesterday that Daniel Hauser, a thirteen-year old boy with Hodgkin’s Lymphoma, will have to submit to chemotherapy treatment. Daniel, along with his parents, had chosen to pursue alternative treatments in accordance with their religious beliefs, but the judge stepped in and said that Daniel must take the conventional form of treatment. Daniel is not the first to be at the center of this controversy.
The law on the matter is generally this: Children can use alternative therapies as long as they don’t have a life-threatening disease for which there is a proven conventional treatment. If they do, then the State can step in and hold the parents guilty of child neglect for not providing necessary medical care.
In an interview yesterday morning, the attorney for the Hauser family argued that contrary to the evidence presented at court, Daniel’s chances of survival with chemo were actually 40%, not 90%. Hauser’s attorney argued that the discrepancy in statistics arose from the fact that the prosecutors in the case were arguing relative instead of absolute statistics, which is an issue we have discussed previously on this blog in one of our articles on efficacy data and insurance coverage. (This game of relative versus absolute statistics is thought to be the reason most cancer patients undergo conventional treatments in the first place- relative statistics make the intervention look more beneficial than it truly is.) But the statistical war aside, the issue of kids and alternative cancer care is a highly controversial one. MSNBC.com is taking a poll on the issue, and after about 3,500 votes, 35% voted that “Families should be allowed to make their own decisions in every aspect of medical care,” and 65% voted that “Refusing medical care that could save the child’s life is a form of medical neglect…”
On the one side are parents like the Hauser’s who argue that in accordance with the Constitution, they have the right to the care, custody, and upbringing of their children, and the State should not interfere in their ability to decide what the best medical treatment is for their child. Here, the First Amendment was also implicated, as the Hauser’s argued that they should have the freedom to follow their religious beliefs. The issue is complicated even further in this case by the fact that Daniel is thirteen and can speak for himself. He is not an infant who cannot voice an opinion in the matter. The Hauser’s attorney made this argument on his behalf, stating that Daniel is considered an adult in the eyes of his religion, can participate fully in religious practices, and should be allowed to make decisions in accord with the tenets of his religion. In a handful of prior cases in other states, this argument has worked. Judges will sometimes (although rarely) make an exception to the rule based on the child’s age, understanding, and maturity. For example, in Utah, a judge ruled that a twelve year old could choose not to undergo chemotherapy.
(Interestingly, another argument the Hauser’s attorney made was that the first key to healing is that the patient believes in the treatment he or she is receiving. Hauser’s attorney argued that Daniel does not believe in chemotherapy, and in fact, is adamantly against it. The thought being, presumably, that this factor will work against the efficacy of the treatment and Daniel’s response to it.)
On the other side of the issue, the State asserts an interest in the well-being of the child and views alternative treatments as akin to no treatment. There are those who believe that parents who do not choose the conventional treatments for their children are “ignorant” and “stupid” and should be “locked up” (just peruse the comment section of the MSNBC.com poll if you want to read these, and other, adjectives and expletives for yourself).
But the question remains- was this decision the right one? There is no easy answer to that question.
While the Hauser’s attorney said they are considering an appeal, it may be that Daniel will have to undergo chemotherapy and then pursue alternative treatments after he is done with the chemo (as most children and their families who desire to use alternative therapies end up having to do). But the question will be- what will be left after Daniel is done with chemo? Alternative medicine can do a lot of good when it comes to immunotherapy and boosting the body’s ability to fight. But it doesn’t always work like an emergency resuscitation system. Here at Envita, we have treated kids with difficult cancers in the past. They always come to us after they have gone through the conventional treatment at other hospitals or facilities where those treatments have failed. Many have been sent home to die. They come to us with little to no immune system, little to no zest for life left, having given up on their dreams, and completely racked by the conventional therapies. Some children have done amazingly well in response to our treatments, and are here today cancer free, attending school like any other normal kid, while others didn’t make it. For those little ones who didn’t make it, the most we could do was improve their quality of life and extend their time on earth as much as we could. To their families, every extra second they got to spend with their children was precious.
But you have to wonder- how could these children have been helped if they were able to receive alternative treatments sooner, or at least in combination with, the conventional treatments? Treatments like chemo can absolutely destroy the immune system, deplete these kids’ white blood cell counts, and have other debilitating side effects on children.
A few heartbreaking stories bring home the point. Richard A. Jaffe is an attorney who has been defending “medical mavericks,” as he describes them, for most of his career. He has written a fascinating book entitled Galileo’s Lawyer, which is an in-depth look into some of the cases he has worked on. (1) One of those cases involved a four-year-old boy and a medical maverick by the name of Stanislaw Burzynski.
The four-year-old boy, Thomas, had been diagnosed with a deadly form of brain cancer- medulablastoma. Jaffe describes how Thomas initially had surgery to remove the tumor, and suffered some visual and motor defects as a result. The standard postoperative treatment was chemo and radiation. The side effects were horrendous. Thomas’ family did some research and found that only about half of the kids survived the treatment, and out of those who did, many suffered severe and permanent mental retardation. Thomas’ family wanted to enter him into Burzynski’s clinical trials with an experimental alternative treatment, but the FDA did not allow it. Thomas’ family fought and fought and tried everything from media pressure to political pressure to legal pressure (all the while going “underground” to avoid Child Protective Services). Finally a deal was worked out by which Thomas was to receive three rounds of the chemotherapy. If it didn’t work, Thomas would be allowed to enter Burzynski’s trial.
After the second round of chemo, Thomas’ white blood count was so low it was at a fatal level, and the doctors told his parents he might not make it. In addition, the tumors were actually increasing in size. That was the last straw for Thomas’ parents. They went back to the FDA, and Thomas’ last round of chemo was waived and he was allowed to enter Burzynski’s trial. At this point, Thomas was so immunocompromised because of the chemotherapy that he was in and out of the hospital with pneumonia and infections. But despite that, his scans were showing that after only a short time on Burzynski’s treatments, his tumors were shrinking dramatically and the others had stopped growing.
But as Jaffe writes, “I have seen this many times with Burzynski’s patients, kids and adults alike. Their tumors start to shrink, but because of a severely impaired immune system resulting from prior chemo and radiation, their general condition deteriorates, slowly at first, but then more quickly. Thomas was starting to win his cancer battle, but his body was losing the war. Each time he would get an infection or pneumonia, he would become progressively weaker. This took an emotional toll on him and the rest of his family.” (1)
Eventually, after his fourth trip to the emergency room at the hospital for pneumonia, Thomas was “just tired.” Up until then, he was determined to fight the cancer and the infections and the pneumonia caused by his weakened immune system. But as Jaffe recounts, this last time, his parents asked Thomas whether he still wanted to fight, and Thomas said, “‘No, Mommy, I’ve had enough. I want it to end. I just want to sleep.’ Thomas died shortly thereafter.” (1)
Jaffe goes on to ask the ultimate question- “Could Burzynski have saved Thomas if he had treated him before his immune system had been ravaged? Obviously there is no way to know. But given the fact that the standard treatments for this kind of disease are so risky and that the known side effects for kids are so horrendous, it is worth asking whether the FDA really should be in the business of stopping families from seeking a milder form of treatment.” (1)
One of the most outspoken couples who have dealt with this issue is Michael and Raphaele Horwin. There son also died of brain cancer after receiving intensive chemotherapy following surgery. In a 2008 interview with journalist Peter Barry Chowka, the Horwin’s gave an emotional and insightful interview. (2) Even before their son, Alexander, died, the Horwin’s were beginning to question whether the treatments were actually shortening his life. They began researching chemotherapy protocols for children with brain cancer, and what they found changed their lives. Nine years after Alexander’s death, Michael went to law school and became a lawyer. He wrote an award-winning law review article on the subject, entitled “War on Cancer: Why Does the FDA Deny Access to Alternative Cancer Treatments?” His wife, Raphele, became a forensic scientist so that she could better evaluate the medical literature on the issue of cancer survival statistics. The Horwin’s have even testified before the House Committee on Government Reform on this issue.
In their interview with Mr. Chowka, the Horwin’s describe how “We watched what chemotherapy did to our son- we watched it destroy him and rob him of any chance he had to fight and overcome his disease. When the cancer came back and killed him while he was on chemotherapy, the physicians called it ‘leptomeningeal progression.’ As soon as we returned home after the funeral, we began doing research on leptomeningeal progression…Incredibly, we found articles in the medical literature that discussed how the chemotherapy drugs that Alexander had been given resulted in leptomeningeal progression and death in scores of other children going back years!” (2) In response to the question, “What are the greatest myths in our society about cancer and its treatment?”, the Horwin’s responded: “That chemotherapy and radiation represent a ‘cure,’ and the only cure for brain cancer. This is nonsense…oncologists have been giving various chemotherapy protocols to children with pediatric brain tumors for almost 25 years and nobody speaks out about the devastating side effects and death that almost always follow.” (2)
The Horwins went on to say that:
Every year more than $3.5 billion is spent on cancer research in this country…Isn’t it interesting that after 50 years of chemotherapy and 100 years of radiation, cancer is still almost always a death sentence? When you think about this fact and look at all the truly effective cancer therapies proposed and utilized by innovative scientists and physicians that have been quietly destroyed, you realize that money rules the day…the medical monopoly continues to use its tremendous political influence to make sure that all effective competition is crushed. That means that thousands of children will die needlessly, not to mention hundreds of thousands of adults. The problem isn’t that we need to spend more money. We’ve spent billions already! There are better answers out there. The problem is no freedom…We were told that our son Alexander would be receiving ‘state-of-the-art’ chemotherapy which had saved or extended the lives of many many other children. But the truth is that the oncologists had admitted in their medical journals that the chemotherapy given to Alexander was the same chemo that had been used alone or in combination for over twenty years and it was ineffective and toxic. (2)
The Horwin’s also gave advice to families of children with cancer. They stated that:
If you are parents of a child who has cancer and who is under the age of eighteen, make sure that you get a good lawyer who is familiar with family law. Tell your oncologist that you want to speak to parents whose children received the same chemotherapy treatment and/or radiation that he is prescribing for your child, and who are still alive after five years or ten years after. That will probably tick off the oncologists because they usually can’t come up with anyone’s name. When you have a meeting with the oncologists, ask if you can tape the conversation openly because your wife or husband could not make it. When they know they are being taped they will usually give you something closer to the truth about your child’s prognosis. Do your research on all of the chemotherapy drugs the oncologists want to give your child. Make sure you know how long these drugs have been used in conventional medicine. Get copies of your child’s medical chart- you will be able to see what doctors write about you and about the prognosis and to each other. Whatever your particular cancer, please do your research. Use Medline or spend some time in a university medical library and read what oncologists write for and to each other in their prestigious medical magazines. Ask to talk to patients who have gone through exactly the same chemotherapy protocol and radiation treatment, and make sure that these former patients have been out of trouble for five years or more. Read books on alternative treatment, as many as you can. Pay close attention to the therapies that have been shut down or restricted by the government. As unusual as this might sound, suppression of an alternative therapy often is a reliable indication that the therapy has value. (2)
The Horwins also made clear that the alternative medical industry also has its shortcomings and not everyone who claims to offer alternatives can be trusted. The Horwins warn about those who prey on cancer victims and the charlatanry that exists in the field.
Which brings us back to Daniel Hauser. If Daniel is eventually allowed to use alternative therapies, a lot will depend on what kind of therapies he’s using and where he’s getting them. At the moment, it is unclear what alternative therapies Daniel wants to use. Unfortunately, it sounds as though he will not be receiving alternative therapies necessarily under the care of a doctor or at a facility, but will be undertaking them on his own. If so, the outcome looks a little bleak. It may be that the therapies he wants to use are not advanced alternative therapies backed by medical literature, but instead could be very minor and “soft” therapies. Of course, if this is the case and Daniel’s self-help remedies don’t work, it will be thought to be yet another feather in the cap of those who claim alternative treatments “don’t work.” If the chemotherapy doesn’t work, on the other hand, the outcome will not be blamed on the failure of the therapy but on the disease itself. (And even further, if Daniel does find a credible doctor who can offer advanced alternative therapies after he is done with chemotherapy, and his disease goes away, the success will be attributed to a latent effect of the chemotherapy or a “spontaneous remission,” not the alternative treatment.)
Either way, the issue continues to be a controversial one with no easy answers for the parents of children who suffer with this disease. But there are those who can offer help and support.
The Fullness of Life Foundation is a non-profit organization that helps kids with cancer gain access to integrative medical treatments. Fullness funds the cost of the children’s treatments, as well as their travel and housing costs while they are receiving treatments. Fullness also provides children and their families the opportunity to attend sporting events, go to the theater, and have access to other enriching activities to make sure these kids can still be kids and live their lives to the fullest.
For more information about Fullness, please visit their website – www.fullnessfoundation.org .
Sources:
(1) Jaffe, Richard A. Galileo’s Lawyer: Courtroom Battles in Alternative Health, Complementary Medicine and Experimental Treatments. Thumbs Up Press, Texas 2008.
(2) Chowka, Peter Barry. “April Fools Joke Not: The Study of Alternative Cancer Therapies is Almost Extinct.” April 1, 2008.
