Tagged: Georgia

Burzynski Patient Sen. Ed G.’s Story

As Stanislaw Burzynski heads to court again to answer charges made by the Texas Medical Board on behalf of a variety of patients, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now. This one is notable because not only was the patient a State Senator, but he also reported that a probable sign of getting worse was a sign of getting better. Oh, and he testified on Burzynski’s behalf in front of Congress.

In the last week of the 1996 Georgia state senate race, incumbent from Macon Ed G. tried to speak on the phone, but couldn’t. Also, printed letters looked scrambled. While he initially dismissed it as stress related to his campaign, a friend who was a physician sent him to the doctor the next day. An MRI on Nov. 14th revealed not the small stroke they expected, but a brain tumor lodged in the front of his brain.

The decisions that he made in the days following the diagnosis reflect his approach to his treatment:

I went to three of the best neurosurgeons in Atlanta and they seemed to contradict themselves in what the best options for treatment were for me. The last doctor was one of the best neurosurgeons at Emory University in Atlanta. This doctor suggested chemotherapy and radiation and said this might control the growth of the tumor for a while but eventually it would come back and be a lot worse and at that time we would have to see what options were available. Obviously this was not a very good option in my opinion. I decided against chemotherapy and radiation because of the toxic side affects and the increase chance of other cancers they themselves caused. A person that takes chemo and radiation is 25 times more likely to have another form of cancer than the average person.

I talked it over with my wife and we decided to look at an alternative type of treatment. I looked and studied the options for several weeks and decided that Dr. Burzynski had the cure for brain tumors.

This, of course, is the Nirvana fallacy. Chemotherapy and radiation, while not perfect and while they carry real consequences, might actually have been the best course of action. And you reject the best advice of the best neurosurgeons at your own peril.

In mid-December, he went to the Burzynski Clinic, and he reports:

three weeks later 50% of the tumor was gone. After five months the cancerous part of the tumor was completely gone. I have to remain on the IV part of the treatment until the end of this year and then will take the antineoplastons for several years by capsule.

Of course, he was sold on the treatment entirely at this point. Adding to his commitment was a $14,000 start-up fee and $5,000 for the first treatment, according to the Macon Telegraph,  which broke the news of the state senator’s decision to undergo antineoplaston treatment on January 10th, 1997. This announcement seems not to have met any skepticism whatsoever, which is mildly surprising given that at the time Burzynski’s extensive legal troubles were at their height. The Senator’s state-run insurance was not going to cover the treatment, and so a number of public officials banded together to raise money for their unfortunate colleague’s doctor. Lt. Gov. Pierre Howard challenged people to raise funds for the treatment, and by the time the article ran, the church accepting the donations had received $35,000. The monthly treatment would cost an additional $9,000 a month, the church official interviewed reported: “He’s not sure how many months he’ll have to be in treatment. That will be decided as he goes along.”

The same representative reported that the Senator had had a brain scan the previous week:

“It showed that the tumor had not increased in size at all, so the treatment has stopped the growth,” Pardue said.  “He said to us it was moderately growing.”

So (besides it growing and not growing at the same time), even if the tumor had stopped growing, it would not mean that the treatment was having any effect, because of a feature of solid tumors known as Gompertzian growth or “day 2 of your introductory oncology class.” We also hear that the Senator is flying out to Texas every month for treatment. This is interesting because at this time it seems that the Clinic is obeying the rules that federal prosecutors were trying to enforce. The Senator will participate in the upcoming 40-day legislative session but he will be carrying a “fanny pack” that has his infusion pump.

Four days later, the Telegraph reports that the 44-year old Senator has returned from his most recent trip to Texas, and that his sons help him prepare his bags of ANP. He reports:

“I can’t sleep at night sometimes because of the medicine. Sometimes I have to take naps.”

What this public official can’t say in polite company is that the quality of sleep of patients on antineoplaston is heavily degraded because the high sodium load means that the patient has an unquenchable thirst, and he is constantly at the toilet. At the same time, he reports:

“My condition is improving, and the cancer is reducing.”

As the Macon Telegraph reported the next day, the Senator thanked his colleagues in the Senate for their support. Due to their efforts, $45,000 had been raised for the expected $100,000 treatment, projected to last for a year. The paper reported that that he told his colleagues “that his tumor, located in the right front area of his brain has already been reduced by 30 percent. He said he will return to Texas on Feb. 20 for another treatment and is hoping that doctors will find his tumor gone.”

We get an update from the Macon Telegraph on the 12th of March about the Senator’s progress:

“Ninety-two percent of the worse part of the tumor is gone,” he said. “I think God is going to heal this thing in his timing. […] Burzynski is predicting that the ‘worst part of the tumor’ will be gone in a month, [the Senator] said. The treatment will run another eight months[.]

It’s a strange qualification. 92% of the worst part? How does that relate to tumor size? Nonetheless, the Senator is now fully behind Burzynski, as you might expect. The same day, the paper would report, he presented a bill to the Senate that would allow patients to take “experimental treatment” without facing legal repercussions, though the article mentions that doctors could already prescribe experimental treatments to patients. The Senator says it will protect doctors, but the Medical Association of Georgia opposes it:

“This is misguided public policy,” said David Cook, director of governmental relations for the Medical Association of Georgia. “In the bill, a doctor could tap dance around your bed and that could be the cure for cancer.”

At least the tap dancing doctor could be entertaining and someone would be getting some exercise. ANP doesn’t show even those benefits. The bill passed the Senate 74-2. It passed in the House 146-19, the Telegraph reported on the 26th of March. It was rushed through by the urgency of the Senator’s situation.

By June 26th, Burzynski has already exacted all of the money raised by the Senator, and another fundraiser is in the works, this time to raise $100,000. One of the guests at the fundraiser is future Georgia Gov. Sonny Perdue. Half way through the article, the Senator reports something horrible:

[The Senator] said the treatments have shrunk the tumor to the point that brain scans now pick up a ‘2-inch circle of fluid or something. It’s not an additional mass,’ he said. ‘It’s actually eaten through the brain.

And there it is. Another patient reporting that a cyst in a tumor is a sign of improvement, not a sign that the tumor has outgrown its blood supply and that the ANP has not arrested its growth one jot. Patients have repeated this horrible, unconscionable, misleading prognosis for what is ischemic necrosis for decades.

Why? I bet it has something to do with the 100,000 that the future governor is raising.

At this time, it seems that the Senator will be on treatment for up to two years, and that he has another 8 months at least hooked up to the IV pump. He here confirms that he is experiencing the most noticeable side effect of treatment: “The only thing that I have is a tremendous amount of fluid going going through my body. It just wears you out.”

The fundraiser nets only $25,000 for the Senator. “It just means we’ll have to have another one,” he says in the July 8th edition of the Telegraph. In November, the poor guy is asking for another $25,000. The paper reports that:

“[…] recent tests show his brain tumor is completely gone, but he must continue is treatment for several more months ‘just to make sure.’ He now needs $25,000 to pay for the intravenous and oral medications.”

This seems difficult to believe, especially given what’s coming.

In September, the Senator is one of the delegation who travel to Washington to appear before Congress on behalf of the man who is bleeding him, his family, his church, and his colleagues dry. In his testimony in front of the Government Oversight and Reform Committee, the Senator says:

After learning of alternative treatments and the problems they were having with the FDA, this past January during the Georgia General Assembly I introduced and was successful in getting passed an Access to Medical Treatment Act. The citizens of Georgia believe that patients ought to have the access to the treatment of their choice when their lives are threatened. Because I am a State Senator my name has been in many stories nationwide associated with Dr. Burzynski. This has led many potential patients to call and ask me about the treatment and for help getting into a protocol.

The most disheartening thing about the whole ordeal with the FDA is that while the FDA is allowing the antineoplastons to go through clinical trials to test their efficacy, they are making patients take treatments they do not want to take before they can become a part of a clinical trial. One reason we choose Dr. Burzynski is that his medicine is nontoxic. For the FDA to make a patient take radiation before they can become part of a clinical trial for antineoplastons is unreal.

The FDA will not allow patients that don’t fit the protocols to take the antineoplastons without a fight. One gentleman from Texas had high blood pressure and because the medicine is a sodium based medicine taking the normal dose the way the protocol requires would have caused him more problems. This gentleman needed a special treatment unique to him. It took six weeks of fighting with the FDA and getting his Congressman involved before he could take the treatment.

When the FDA was created it was with good intent. The citizens of this country needed help with determining whether drugs were safe or not. But if I allowed my two boys to grow up without supervision they would become something different than they are now. They would be arrogant, belligerent, undisciplined and uncaring much like the FDA has become. I believe it is time that Congress steps in and brings some discipline to this department and restore some integrity.

Of course, a protocol is called a protocol for a reason, so that you can get reliable data by comparing like cases. A patient who has high blood pressure (and presumably a brain tumor) should probably not be on one of the sodium bombs that Burzynski’s Clinic administers.

On 20 August of the following year, the Senator decides to not run for another term in office, as reported in the Atlanta Journal Constitution:

State Sen. Ed [G], Republican from Macon, has changed his mind about running for re-election. [Senator G] was diagnosed with a brain tumor two years ago, and has withdrawn from the race for health reasons.

[Senator G] had no opposition in last month’s primary. The state Republican Party’s executive committee has nominated Susan Cable, a Macon community activist and former Bibb County school board member, to run in his place for the 27th District seat. The Democratic nominee in the race is Floyd Buford, a Macon attorney.

[Senator G] said he plans to serve out the rest of his term. However, he said the rigors of campaigning, combined with the medication he’s taking will prevent him from seeking re-election. “I probably wouldn’t be able to do it — not as well as I should,” he told the Macon Telegraph.

Since his diagnosis, [Senator G] has been traveling to Texas for alternative therapy that he said has resulted in significant improvement in his condition.

Yet he’s too sick to continue. What happened to the “disappeared tumor”?

The Senator died on Nov 8, 1999 according to the AP, “of brain cancer.” He was 46-years old. If the Senator was in a clinical trial, it remains unpublished to this day.

For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.