There are few things more infuriating than a bureaucratic system that’s designed to protect, but because of a misguided sense of purpose, ends up “protecting” people from the things they need the most.
Imagine yourself in this scenario: Your child is sick. His doctor offers a treatment that you find unacceptable. So you do some research and find a doctor who has developed a treatment that you feel is right for your child. Could it be simpler? You make your choice and live with the results.
This is how Michael and Raphaele Horwin believed their story would be told. In 1998, their 2 year-old son Alexander was diagnosed with, medulloblastoma – a fast-growing, invasive brain tumor that easily spreads throughout the nervous system. Two brain surgeries were successful in removing the tumor. The Horwins’ doctors recommended the typical chemotherapy used for medulloblastoma – an extremely harsh chemo that often damages the heart, lungs, liver and kidneys, and can lead to loss of hearing, further cancers and even death.
The Horwins found this unacceptable. They began looking for alternate treatments and soon located a doctor named Stanislaw Burzynski whose Houston clinic had successfully treated several children with cancer, including medulloblastoma. Burzynski’s unconventional treatment used synthetic peptides, purported to “switch off” cancer genes. And although Burzynski’s treatments were controversial, they were part of an FDA-approved clinical trial.
But there were two problems. First: The FDA guidelines stipulated that a patient such as Alexander could only receive Burzynski’s treatment if he had already been given an “approved” chemotherapy, and the chemo had been ineffective in curbing the cancer. The second problem was presented by Alexander’s oncologists. The Horwins got a jolt when they discovered that they had no choice in the matter of Alexander’s chemotherapy treatments. The oncologists informed them that, if necessary, they could forcibly remove Alexander to administer the chemo.
Hemmed in by laws and regulations designed to “protect” kids like Alexander, the Horwins reluctantly agreed to begin chemotherapy. After three cycles of the treatments, a CT scan showed that a large number of new tumors had developed. At this point Alexander became eligible for the treatment at the Burzynski clinic, but his cancer was too far advanced. Alexander died three weeks later.
The FDA regulations that prohibited the Horwins from seeking treatment for Alexander from Stanislaw Burzynski were designed to “protect” the Horwins and others like them from unscrupulous charlatans who would charge an exorbitant price for an unproven treatment.
Exorbitant price? Alexander’s medical bill totaled almost a quarter of a million dollars.
Unproven treatment? Oncologists assured the Horwins that the chemotherapy they administered to Alexander (called CCG-9921) was “state-of-the-art.” But after Alexander’s death, the Horwins discovered that over a period of more than 20 years, numerous studies in medical journals had reported that this chemo was known to cause dementia, seizures and death. In fact, one study was discontinued when the children’s tumors were discovered spreading rather than decreasing. Furthermore, CCG-9921 has been approved by the FDA to treat adults, but its use with children is considered to be “experimental.” And yet, in spite of its horrendous track record, CCG-9921 is still being prescribed (or in the case of the Horwins: forced) to treat children with medullablastoma.
So who are the charlatans? Imagine the answer you might get if you asked the Horwins that question. The big difference here, of course, is that charlatans can’t force you to use their treatments on your child.
Based on the notion that the judgment of parents can’t be trusted, government regulations forced Alexander Horwin into the harshest imaginable chemotherapy. If the Horwin’s had been free to pursue the Burzynski treatments, they could not have possibly done any worse than the government did. But could they have saved Alexander’s life? Unfortunately, they’ll never know.
Without question, there are true charlatans out there who would prey on desperate people, bilking them of their savings while convincing them that a bogus therapy might save their lives, or the lives of their children. But this is what thorough research and background checks are for. And I would much rather place my faith in each individual’s personal judgment before I placed my faith in a bloated bureaucracy, willing to restrict everyone’s right to choose in order to protect a few of us from making bad choices.
To Your Good Health,
Jenny Thompson
Health Sciences Institute
