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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.
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