Washington, DC--Congressman Dan Burton (R-IN) held hearings on
February 4, 1998 that focused on problems in the availability of non-conventional
cancer treatments. [A second day of hearings was
held on February 12, 1998.]
Speaking to an audience of patients, physicians and concerned citizens
who packed a lofty hearing room in the Rayburn House Office Building, the
Indiana Congressman told of his own wife's agonizing experiences with cancer--and
with the intransigence of Food and Drug Administration (FDA) officials.
"Today we will begin a series of hearings to examine issues and
problems related to alternative medical treatments for millions of desperately
ill Americans," the Congressman began. "We will also look at deep-seated
flaws in the process of the Food and Drug Administration (FDA) that
governs access to some of these treatments.
"Dedicated Members from both parties have raised concerns about
patient access. We owe it to the millions of patients, their families
and loved ones who are not satisfied with conventional treatments."
[Rep. Burton's complete statement.]
The Committee on Government Reform
and Oversight has existed in one form or another since 1816. Abraham
Lincoln served on one of its predecessor committees. Formerly the Committee
on Expenditures in the Executive Department, it was thoroughly overhauled
in 1995 following the Republican capture of the House of Representatives.
Chairman Dan Burton is nationally known for his investigation of campaign
fundraising during the 1996 election. However, he is also known as a champion
of the rights of cancer
patients to receive the treatment of their choice.
After the Chairman's impassioned remarks, the Committee heard from three
panels: the first consisted of former Rep. Berkley
Bedell (D-IA), who after his own battles with Lyme's disease and prostate
cancer became a tireless advocate of freedom of choice for all patients.
The second consisted of patients whose own access to non-conventional treatments
had been seriously jeopardized by FDA actions. Finally, in the afternoon
the committee heard from a group of experts who have seen first-hand the
suppression of alternative therapies. The author was among those testifying
in this group.
Most speakers endorsed legislation that is pending in the Congress, called
the Access to Medical Treatment Act. This bill, designated H.R. 746 in the
House,was introduced by Rep. Peter DeFazio (D-OR) and Joe Barton (R-TX)
and is cosponsored by a bipartisan coalition of 38 other House members.
It would give patients more options in choosing their health care and doctors
more freedom in what non-toxic treatments they can prescribe in their own
offices. It was Mr. Bedell who first conceived the idea of this historic
legislation, helped draft its wording, and is among its main proponent outside
the halls of Congress.
WAXMAN OPPOSES
Much of Mr. Bedell's testimony was taken up in interchanges with Rep.
Henry Waxman (D-CA). Mr. Waxman, who gained national attention for
his struggle against the tobacco industry, is a stubborn opponent of the
freedom-of-choice legislation. Although he professed sympathy for the assembled
patients, the main thrust of his argument was a defense of the FDA against
any and all charges relating to their handling of alternative medicine.
In fact, he didn't stay to hear the patients or experts testify. (This antagonistic
attitude may be fueled by the sharp partisan debate that has raged in the
Committee over extraneous issues, namely the question of campaign financing.)
We have learned that on the previous day, Mr. Waxman had arranged a separate
briefing with the FDA for Democratic members of the Committee only. The
Republican Chairman's staff was not even informed of this meeting and only
found out about it at the last minute. FDA came prepared with dossiers
on most of the people who were testifying, including the author. It
is also believed that Mr. Waxman had a hand in convincing most of the committee
Democrats to stay away from the Hearings, and in fact very few of them attended.
Rep. Edolphus Towns (D-NY) went so far to issue a statement denouncing
the hearings and defending the FDA from all charges.
In all, the Republicans who attended the hearings included Constance
A. Morella (R-MD), whose district includes the NIH, Stephen Horn
(R-CA), Mark E. Souder (R-IN), Mike Pappas (R-NJ), and Vince
Snowbarger (R-KS). On the Democratic side, the only member who attended,
besides Waxman, was Danny K. Davis (D-IL). Bernie Sanders (Ind-VT)
also attended.
PARTISAN POLITICS?
It might therefore appear from this that medical freedom of choice is
now a partisan issue, with Republicans in favor of it and Democrats opposed.
No doubt certain opponents of alternative medicine are trying to frame the
debate in this way. Such a partisan division would certainly doom the bill
to defeat. (We might note that some Republican friends of freedom of choice
have also promulgated that view, for sectarian reasons of their own.)
In fact, however, the issue of medical freedom is entirely a non-partisan
one. Remember that Mr. Bedell was a liberal Democratic member
of Congress for 12 years. Peter DeFazio, who introduced the bill
in the House, is another progressive Democrat. Other cosponsors of the bill
include Ron Dellums of California, Elenor Norton of the District
of Columbia, Major Owens of New York, and Gary Ackerman of
New York--none of whom is exactly known as a political conservative. In
the Senate, the staunchest friend alternative medicine has is Tom Harkin,
Democrat of Iowa. Senator Tom Daschle, the minority leader, was the
original sponsor of the legislation in the Senate and remains committed
to its passage. On the Committee itself, a cosponsor of the legislation
is Mr. Sanders of Vermont, the only independent in the entire Congress
and a professed socialist.
And so, attempts to present this legislation as a "right-wing"
cause are either misguided partisanship or else a cynical attempt to divide
and conquer those favoring medical freedom, and thereby maintain the status
quo.
PATIENTS TESTIFY
A highlight of the hearings was the testimony of the patients themselves.
The first speaker was Mr. Jack Kunnari, who told
of his family's struggles with cancer. His son, six-year-old Dustin Kunnari,
was stricken with a deadly brain cancer called medulloblastoma. The family
sought out of the help of Houston physician Stanislaw R. Burzynski, MD,
PhD, who put the tumor into remission
During Mr. Kunnari's testimony, Dustin sat patiently in his lap. At the
end, however, he requested a chance to speak. "Dr. Burzynski is
my hero," he said softly into the microphone. "I am only a six
year old boy. But if you take my medicines away, I might die."
You could see tears welling up in the eyes of many in the audience as well
as the Congressmen on the dais. It was an unforgettable moment.
Becky Nippert, R.N. testified about her own
bout with breast cancer, which had metastasized (spread) to 13 locations
in her bones. Yet her latest bone scans show a complete disappearance of
all tumors, which she attributes to a combination of several immune-modulation
therapies. She told how the now unavailable immune agent LK200 was yanked
from sale after the manufacturers were raided by the FDA. (We have been
told that our article on LK200 was included in
the FDA's dossier on us.)
Luckily for her, Becky found her way to another treatment, but almost
nobody else who was responding to LK-200 had such luck, and they are all
dead now.
Ms. Genevieve Sherman told about her own
struggle with advanced breast cancer, and her treatment by an innovative
physician in New York. (The physician asked not to be named, and remains
anonymous.)
Ms. Ann Fonfa also had breast cancer and
told of her use of the Gerson dietary program as well as megadoses of vitamins
A and E. She has not had a recurrence of her cancer in over a year.
Ms. Mary Jo Siegel was diagnosed with stage
IV non-Hodgkin's lymphoma. Avoiding conventional treatments, she was treated
by Dr. Stanislaw Burzynski and is today in complete remission. During the
Burzynski trial she was seen many times in television, telling her compelling
story and crusading tirelessly on behalf of her physician.
All in all, it was an impressive presentation, with many very moving
moments.
EXPERT TESTIMONY
The committee then broke for a vote on the floor of the Congress. When
they returned they heard from five experts with knowledge of this area.
The first wasJonathan W. Emord, an attorney who has represented
many patients in their struggles to receive non-conventional medicines.
Next came Dr. Charles B. Simone, an NCI-trained
oncologist, who uses dietary modification and food supplements in his New
Jersey practice. Next came the author (Ralph W.
Moss, Ph.D.), whose testimony focused more on the abuses of power by
the National Cancer Institute than on the legislation per se. In particular,
Moss urged the Congress to block the $2.2 billion appropriations to the
NCI until it implements the POMES process it began last August.
Moss was followed by Arnold Eggers, M.D.,
a researcher at Downstate SUNY Medical School, whose innovative work in
treating brain cancer (based on the concepts of William B. Coley) have been
frustrated and shut down by the F.D.A. And finally, there was testimony
from Mr. Thomas J. Moore, a senior fellow at the
Health Policy Institute of George Washington University.
MOORE'S OPPOSITION
Mr. Moore was alone on the panel in opposing the legislation. We have
learned that he was there at the request of Rep. Waxman, who felt that his
presence would help "balance" the presentation. However, oddly,
Mr. Waxman then absented himself during Mr. Moore's testimony and the subsequent
questioning by Mr. Burton leaving Moore--in the words of one observer--"twisting
in the wind."
(The oddest part of this was that Mr. Moore is author of several scathing
exposes of the FDA, including Deadly Medicine, a book that was virtually
ignored by the mainstream media but received a very
favorable review here at the Cancer Chronicles website. Many observers
found it difficult to reconcile Thomas Moore the author who has exposed
so many of the misdeeds of FDA with Thomas Moore the policy analyst who
leaped to their defense at these Hearings.)
Overall, the Burton Hearings represented an important step forward in
the progress of the Access to Medical Treatment Act, and also in the education
of the Congress as to the true nature of the cancer struggle. Hopefully,
it will be a first step for the Government Reform committee as it attempts
to carry out meaningful reform of the war on cancer.
--Ralph W. Moss, Ph.D., Feb. 7, 1998 (revised 2/13 and 2/14)
