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I have often been torn about the posts that I write, but never so much as with this one. I pray that I have balanced the issue correctly.
Many of you have doubtless heard about the tragic plight of the Cohen family in Houston. Their six-year-old son, Raphael Elisha, has a brain tumor, and the doctors have said that there is nothing more that they can do for him. It's impossible to imagine how painful this must be. The worst experience of my life was seeing my father die horribly from cancer - I cannot even begin to grasp how terrible it would be to see one's child in the grip of this disease.
In this situation, there is a particular wrinkle that relates to the wider public. Lacking other options, the Cohen family has decided to pursue a controversial form of treatment called Antineoplaston Therapy at the Burzyinski clinic. But the FDA does not endorse this treatment. People are therefore being asked to sign a petition for the FDA to approve a "compassionate use exemption" and to contribute towards the expensive treatment (UPDATE: The money is not only for experimental treatments, but also to pay past medical bills and to support the family, since the parents have been unable to work). It's on the front page of HaModia and in numerous Jewish websites.
Some people asked me to spread word to sign the petition and pledge funds. Others asked me to spread word that the Burzyinski clinic is marketing snake oil.
Last year, in my sister's community, there was a child suffering from a terminal illness. The situation was so bad that he had been placed in a hospice. The family wanted to try an experimental treatment, but the Kupat Cholim refused to pay for it, on the grounds that it was unproven. The family raised money from the community, began the treatment, and the child's condition began to improve. Upon seeing this, the Kupat Cholim concluded that the treatment was indeed effective, and proceeded to pay for the remainder of the treatment. Today, the child is leading a normal life. This is thanks to the parents pursuing an experimental treatment, and the community funding it.
Many people therefore conclude that in such cases, one should help. After all, you have the chance to save a life. What harm can it do?
On the other hand, there is the potential for harm. There is a reason why the FDA does not approve it. According to reports, there is no reason to believe that the Burzyinski clinic's "Antineoplaston Therapy" has any medical benefits. It is extremely expensive and gives false hope to desperate people who will try anything. There are allegations of serious improprieties with Burzynski. Furthermore, the treatment has the potential for numerous harmful physical effects. See this article and this story for further explanation. In the words of my friend Dr. Charles Hall, a medical school professor with a PhD in biostatistics, and part of a National Cancer Institute funded cancer center: "Do not under any circumstances sign this petition or any other that promotes Burzynski or antineoplastons. Burzynski has been operating outside of the system for decades, using desperate children like this one as human guinea pigs. He has refused to do proper research and should have been shut down a long time ago. This petition will only give him credibility and attract others to his dangerous enterprise."
But on the third hand, there is another dimension to consider. The Cohen family undoubtedly knows all about the controversy surrounding Antineoplaston Therapy, yet still desires to pursue it. Even if one believes it to be a bad decision motivated by desperation, it's their decision to make. Perhaps one should support them in this, and view it as financial and moral support for a family going through an awful crisis.
Personally, I feel torn. I cannot in good conscience use this forum to promote the implementation of a treatment that according to numerous medical professionals is a scam that is more likely to cause harm than to help. But on the other hand, I cannot in good conscience use this forum to discourage the support of a family that is in a terrible crisis and has decided to pursue this course of action. And so, I have decided to simply alert people to the situation, present both sides, and call on everyone to make the best decision that they can.
May Hashem grant a recovery to Raphael Elisha Meir ben Devorah. And may He grant all of us the wisdom and strength to know how to act in such situations.