Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 This little boy passed away. The parents blame the establishment for his death. 03:00 AM Jul. 18, 2000 PT If Jim and Donna Navarro lived during different times, the outcome of this story would probably be different. Even if they had simply stayed away from the Internet, their story would have been materially altered. In fact, Donna Navarro probably would not be answering her cellphone while pacing the floors of her temporary residence in a Mexico clinic, where her 4-year-old son is being treated with an unusual therapy for a lethal brain tumor. " We have left to another country, " she explained, shushing her small son, who was giggling in the background. " I was like, we have to do something. " Deciding on that something is at the crux of the Navarro family's dilemma. Faced with a doctor who insisted on a combination treatment of radiation and chemotherapy for young Thomas -- diagnosed with medulloblastoma in September 1999 –- Jim and Donna turned to the Internet to find out more about the treatment. " We got on the Internet, we looked up brain tumor, " she said. " That's how we found medical abstracts, and that's how we found out about all the awful effects " of radiation and chemotherapy. The Net is replete with information about the deleterious side effects of chemotherapy and radiation on children with brain cancer. Among the consequences are hearing and vision loss, hyperthyroidism, mental retardation, stunted growth, and even death. This information is often eventually linked to the site of one doctor who offers a radically different option. His name is Stanislaw Burzynski. He operates a clinic in Houston that treats several different forms of cancer with antineoplaston therapy, a controversial treatment of peptides, originally discovered in human urine and now manufactured synthetically. The Polish-born doctor -- the only doctor in the world who offers this therapy -- claims that these protein fragments turn off cancer genes. The Navarros talked with Burzynski and immediately liked him. " He's a very credible, intelligent man, " Donna Navarro said. " He was very forthright (and) all his patients called us. " When the Navarros decided they wanted their son to be treated by Burzynski, the FDA denied them permission, ruling that the treatment could only be used as a last resort. FDA officials threatened to take Thomas into protective custody if the Navarros denied him traditional treatment. The FDA –- which has sanctioned government-sponsored clinical testing of Burzynski's treatment only as a last resort in pediatric patients - - maintains it has a duty to protect patients from doctors who offer potentially dangerous treatments. Unless the law is changed, officials there say they're not budging on antineoplaston therapy for Thomas. " We can't harm any patient with these experiments, " said Thomas McGinnis, director of pharmaceutical affairs in the FDA's Office of Policy. " There has to be the possibility that it might work. (The FDA rules) protect the public health from crazy experimental treatments. " Just what is considered " crazy " could change because of the Navarro case. Thomas' parents enlisted the support of Indiana Representative Dan Burton, who drafted a bill that would amend the Federal Food, Drug, and Cosmetic Act to restrict the authority of the FDA to issue clinical holds on investigational drugs or to deny patients expanded access to such drugs. The Thomas Navarro FDA Patient Rights Act is currently moving through the House Commerce Committee. But the Navarros can't wait for the legislation to make its way through Congress. They've left their home in Tucson, Arizona, and established a sort of home in the Mexico clinic, where their son can receive a non-toxic treatment, even if it isn't the one Burzynski -- who remained in the United States -- is offering. " It is my second choice, and as soon as we have access to antineoplastons, we're going to be doing that, " said Donna Navarro. Thomas is undergoing insulin-induced hypoglycemic therapy, another treatment the FDA has not endorsed. In this treatment plan, the cells of a patient's body are deprived of sugar, the theory being that artificially induced diabetes will kill cancer cells. " We read about it in alternative medicine magazines, " Donna said, admitting " it is a very drastic procedure. It's kind of risky. " Story continued on Page 2 » Quote Link to comment Share on other sites More sharing options...
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