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Government Reform and Oversight Committee
February 4, 1998

Mr. Jack Kunnari with son, Dustin

Hello. My name is Jack Kunnari, and this is my son Dustin. It is a privilege to testify here today. But it also troubles me that we need Congressional hearings and new legislation to give us back our Constitutional rights. The Declaration of Independence states that "we are endowed by our creator with certain inalienable rights," including "Life, Liberty and the Pursuit of Happiness." That should also mean the pursuit of health. As I learned when my son Dustin became sick, this is a right we have lost.

Dustin was diagnosed exactly 4 years ago, at the age of 2-1/2, with a deadly medulloblastoma brain tumor the size of a golf ball. The neurosurgeon could only remove 75% of it. Radiation was out of the question because at his age, it would have left him a vegetable.

We were referred to the University of Minnesota for a clinical trial. A computer would randomly put Dustin on one of 3 highly-toxic chemotherapy drugs. According to the informed consent, the side effects of these drugs included bone pain, hearing loss, irreversible damage to kidney and bladder, destruction of his immune system, learning disabilities, sterility and leukemia. In addition, the doctors could not name a single child who had done well following any of these treatments.

When we told the doctors we would not subject him to such a cruel regimen with so little hope, they told us they could get a court order to treat Dustin as they wished. I told them to do what they had to, but they would not treat my son.

In April, 1994 we visited Dr. Burzynski's clinic in Houston. The difference between it and the hospital was like night and day. Dr. Burzynski's patients were full of life and hope. Unlike the cancer ward at the University, you could talk to patients who were getting better. Dr. Burzynski and his staff were very honest, courteous and professional. Dr. Burzynski made no promises, but said he had had good results with brain tumors, and agreed to treat Dustin for 6 weeks to see if Antineoplastons would have any effect.

After 6 weeks, the MRI showed Dustin's tumor was completely gone. But a year later a second tumor about one inch by one inch in size appeared. Dr.

Burzynski increased Dustin's dose of Antineoplastons, which dissolved the tumor in 5 months.

Dustin continues in remission today, and is off intravenous treatment. The Antineoplastons caused no side effects whatsoever, and throughout the treatment Dustin was a healthy, happy, active child - no different from other children except for the backpack he always wore with his pump and the Antineoplastons.

From the time we went to Dr. Burzynski, the biggest threat to Dustin's life was not cancer, it was the FDA. In February of 1996, with cold disregard for the life of my son and Dr. Burzynski's other terminal cancer patients, FDA used legal maneuvers to stop them from receiving Antineoplastons. If not for quick and compassionate action by Congressman Joe Barton and his Investigations and Oversight Subcommittee, FDA would have succeeded. And Dustin would not be here today.

Why did FDA take this action? Not because it thinks the drug doesn't work. The current head of the FDA, Dr. Michael Friedman, has written that Dr. Burzynski's "human brain tumor responses are real." Not because those patients had a better treatment option available - Dustin had none. Incredibly, it was because these patients did not live in Texas, and had to cross state lines to take the drug back home with them. FDA claimed that was a crime, even if the drug was saving their lives.

As a result of the FDA's actions, Dr. Burzynski can now only treat patients with its approval. The FDA has final say over medical decisions concerning Dr. Burzynski's patients, not Dr. Burzynski. Some of its rules and decisions are arbitrary and against patients' interests. It terrifies me to realize that under current rules, Dustin would have had to stop treatment when his second tumor appeared. FDA forced Dustin to needlessly have 3 blood tests done every week. Twice he was taken off treatment because his sodium was one point too high. Dr. Burzynski felt that stopping the treatment was more dangerous than his slightly elevated sodium level, but the FDA overruled him. I would rather have Dr. Burzynski - a brilliant MD, Ph.D with a lifetime of experience using Antineoplastons - make that call than a faceless bureaucrat in faraway Rockville MD, who has no experience with Antineoplastons and has never treated our son.

FDA claims it is protecting cancer patients. We do not want your protection. Under your protection, cancer deaths climb every year. In my opinion, the actions of your agency are un-American and unconstitutional. Our Constitution was supposed to assure people the liberty to make choices free and independent of government bureaucrats.

Thomas Jefferson wrote, "In questions of power let no more be heard of confidence in man, but bind him down from mischief by the chains of the Constitution." He also said, "The natural progress of things is for liberty to yield and for government to gain ground." The FDA's actions are precisely the mischief Thomas Jefferson warned us against. As members of Congress it is your duty to uphold the system of checks and balances. It is up to you to reign in this FDA. To the American citizens, I would say it is our duty to lead and our leaders' duty to follow. Perhaps we are all guilty of not having done our part in upholding the Constitution of the United States, and of letting our freedoms slip.

Thank you, Congressman Burton and committee members for hearing our concerns.

Article on 2/4 Hearings

2/4/98 Testimony

2/12/98 Testimony

Moss's Editorial on Hearings

Ralph W. Moss, Ph.D. is director of the The Moss Reports for cancer patients. Dr. Moss is the author of eleven books and three documentaries on cancer-related topics. He is or has been an advisor on alternative cancer treatments to the National Institutes of Health, the National Cancer Institute, the American Urological Association, Columbia University, the University of Texas, the Susan G. Komen Foundation and the German Society of Oncology. He wrote the first article on alternative medicine for the Encyclopedia Britannica yearbook. He is listed in Marquis Who's Who in America, Who's Who in the World, Who's Who in the East, and Who's Who in Entertainment (as a film documentarian). This Web site does not advocate any particular treatment for cancer. We urge you to always seek competent medical advice for all health problems, especially cancer. Before consulting our site please read our full Disclaimer statement.

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