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.
