REP. BURTON HOLDS HEARINGS
ON MEDICAL FREEDOM OF CHOICE

© 1998 by Ralph W. Moss, Ph.D.

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 was Jonathan 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)


Go to Testimony of 2/12/98

Moss's Editorial on Hearings

Big Changes Underway at NCI


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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