[As Stanislaw Burzynski goes in front of the Texas Medical Board again to face a list of abominable charges in November, and as we expect many of the patients who have defended him in the past to be used as human shields again, we have been bringing you the stories of patients who defended him but won’t be at this hearing. It is indeed a rare pleasure to be able to publish the story of someone who defended him only to discover what type of operation Burzynski runs. Cari U.’s story, which is reprinted here in its entirety, was first published in Health in 1998. We are very grateful for her permission to publish it here and glad to report that she is doing well, cured by what was then an experimental treatment. She experienced two clinical trials, a legitimate one and Burzynski’s, and she offers a rare, crucial perspective on the differences between the two. All footnotes are editorial additions that were not in the original. –eds.]
Diagnosed with incurable cancer, I had to fight the FDA for the alternative treatment I desperately wanted. I won–and that’s when my problems began.
At the end of February 1996, I sat in a large hearing room on Capitol Hill, staring at the elevated seats soon to be filled by the dark-suited members of the Subcommittee on Oversight and Investigations. The topic of the hearing was whether my doctor, Stanislaw Burzynski, could keep treating patients with the drug that seemed to be ridding me of cancer.
Two years before, at the age of 21, I’d been diagnosed with a slow-growing non-Hodgkin’s lymphoma. The diagnosis had come almost by accident. A routine scan following a bout of food poisoning had shown tumors throughout my gastrointestinal tract. After doctors at several oncology clinics said they had nothing to offer me, I began taking Burzynski’s medication, called antineoplastons (derived from the Greek for “against cancer”). After a few months I received good news: Scans revealed the tumors were shrinking. But the likelihood of my being able to continue the treatment was shrinking as well. The Food and Drug Administration had just won an indictment of Burzynski on 75 counts of mail fraud and interstate commerce of an unapproved drug.
I, along with dozens of other patients, decided to protest. Since another patient and I lived in Washington, D.C., we took to Capitol Hill, toting our bags of medicine around to elected officials as we asked for help. Most of the senators and congresspeople listened politely, stiffly said they would look into the matter, and nodded good day. A handful, however, welcomed us into their private offices, served sodas, and spoke with us at length. After such a meeting with Rep. Joe Barton (R-Texas), he called this hearing. Barton is one leader of a new movement to give Americans more freedom of choice on their medical care. He favored a bill to speed approval of drugs for serious illness and had just cosponsored the Access to Medical Treatment Act, a bill that would give patients the right to try any alternative therapy, even an unproven one. Barton wanted our saga to illustrate his point. For us, the hearing was a chance to expose what we saw as a witch-hunt of our doctor.
Patients, former patients, and their family members arrived in Washington by the dozens, some flying cross-country to attend. I arrived with Michele, with whom I had been lobbying for the past month and who had become a good friend. Seven years earlier Michele had been diagnosed with a rare liposarcoma that, despite numerous tries at chemotherapy and alternative treatments, kept resurfacing. In front of me sat Maria, whom I had befriended in Burzynski’s waiting room last year. She and her two teenage children had traveled to D.C. from Pennsylvania. Maria had an astrocytoma, a brain tumor that had gradually shrunk to a sliver after she went on antineoplastons. On my other side was a father from New Jersey whose 12-year old daughter had been diagnosed with a brain tumor. “Only a couple weeks after she started on antineoplastons she was out of the wheelchair!” he proudly reported to me.
The entire back row of the hearing room swarmed with cameras and reporters. Barton took his seat at the center of the panel and, in his soft drawl, described the hearing’s purpose and announced that FDA officials had turned down his invitation to testify.
Burzynski’s most vocal supporters then paraded in, taking their seats at the front, where they would, one by one, tell their stories. Over the past year I’d gotten to know them: the wealthy businessman and his wife who had transformed their dining room into pro-Burzynski headquarters after antineoplastons cured her of the same type of cancer I was battling; the mother who would bounce her toddler son on her knee as she spoke of how antineoplastons had dissolved his brain tumor; and the decorated policeman whose baby, one of twin girls, also experienced remission from a brain tumor after treatment with antineoplastons, only to die of brain damage caused by her previous long run of chemotherapy and radiation. They all spoke in quivering, choked-up voices, some with tears streaming down their cheeks. Finally the policeman’s remaining twin daughter, her long white-blond hair tied with a bow, asked into the microphone, “Why can’t we throw away the bad medicine and keep the good medicine?”
Anyone who’d ever had cancer or known anyone with cancer began to cry. Anyone who was a parent and could imagine having a child with cancer began to cry. The congresspeople shifted uncomfortably in their seats.
Except for a couple of reporters scribbling on steno pads, I was possibly the only person in the room with dry eyes. Maybe I was unaffected because I had heard the stories a dozen times. But more likely I didn’t cry because I was angry. I was angry that Burzynski’s patients had to keep resorting to tears to get heard. I was angry for all the time and energy I had devoted to fighting off the FDA rather than to getting better. But I was also angry for a reason I was just starting to uncover: that our problems with the FDA could be traced to Burzynski himself.
What I didn’t realize was the scope of our actions. We were affecting the course of alternative medicine as a whole, being used as a voice for the Access to Medical Treatment Act. Yes, I’d like to think every American should have the right to the treatment of his or her choice. Yet I can’t help but see my story as a cautionary tale. Had I only known then what I do now.
I first visited Burzynski’s privately owned clinic in Houston after top specialists at Stanford and Harvard gave me the same advice: Do nothing-a strategy called watch-and-wait. Chemotherapy doesn’t work against slow-growing tumors like mine, they said, and radiation would damage nearby organs. When the cancer’s growth speeded up-in a year, five years, 20 years, no one could say for sure–then a bone marrow transplant might be the route to take. But perhaps, they suggested, if I sat tight for a while, one of the exciting experimental drugs being tested by the FDA would be approved. Unfortunately, I couldn’t get into any of the clinical trials; those spots were reserved for people who had been failed by at least one method of mainstream treatment.
But, at age 21, waiting was not easy. It was unsettling to know I had cancer and was doing nothing about it. Out of frustration, my parents and I began researching alternative treatments, from massive doses of vitamin C to macrobiotic diets to the unproven regimens of doctors from Canada to Mexico.
Given Burzynski’s notoriety, it didn’t take long for us to come across the subject of antineoplastons. We sent away for Burzynski’s materials and also contacted the Lymphoma Research Foundation of America, which, after noting that many people at its support group meetings were Burzynski patients, had compiled a list of those willing to share their experiences. We tracked down a dozen who had used or were using his treatment for the same diagnosis as mine. Amazingly, all said taking antineoplastons had led to a significant decrease in tumor size if not a complete and lasting remission. Over and over they repeated ‘one word: nontoxic. Even if antineoplastons didn’t work for me, I concluded, they wouldn’t cause harm.
I consulted my oncologist, who, after reading the information I provided and speaking with colleagues, took a deep breath and said, “I understand how frustrated you must be and why you would like to try this. I wish there was something here I could offer you, but there isn’t. I can’t tell you to go to Houston, but there is nothing I can find that would make me say, ‘Don’t go.'”
The scientific evidence for and against antineoplastons was thin. Burzynski had written papers that detailed impressive-looking results in individual patients, but they hadn’t been published in major peer-reviewed journals. Other oncologists who had examined records of brain tumor patients treated with antineoplastons had seen enough to recommend research, but they had looked at only seven cases. (Single-case reports can’t fully account for the fact that some tumors may wax and wane even without treatment.) And then there were the troubles of which I was well aware: Burzynski’s history with the FDA.
Fifteen years ago the FDA sought and won an injunction to stop Burzynski from shipping an unapproved drug across state lines. Two years later the FDA raided his clinic, taking patients’ CAT scans, MRIs, and other records. Burzynski had subsequently appeared before three grand juries but hadn’t been indicted. However, problems with the FDA seemed almost standard for the alternative doctors I researched. Many had resorted to practicing in another country.
Burzynski described antineoplastons as a mixture of peptides and amino acids found naturally in blood and urine that could cure brain tumors, lymphomas, and several other types of cancer without serious side effects. The premise was that antineoplastons reprogram cancer cells by switching off the genes that instruct them to multiply out of control and by switching on the genes that tell the cells to self-destruct.
A Polish-trained physician, Burzynski began treating patients with his mixtures in 1977. Initially he developed antineoplastons using his own urine; eventually he had gallons of urine shipped from public urinals. By the time I visited him he’d treated a reported 2,000 patients and was making synthetic antineoplastons in his own lab in Texas. In most cases antineoplastons weren’t covered by insurance plans, so patients themselves paid the medical bills, which started around $200 a day. I was one of the lucky ones. My insurance agreed to pay half.
I spent most of my first day at Burzynski’s clinic sitting in the large waiting room with three dozen other cancer patients and their families. This waiting room was different from the many others I had visited. Most obvious, it was filled with reporters and TV news crews, their lights bombarding us all. Words were unnecessary, as the youngest children told the story of antineoplastons’ appeal best. The children were victims of mainstream medicine. They wore the tattoos of those failures clearly: half-shaven heads zigzagged with scars; swollen, steroidal faces; and weak, wheelchair-imprisoned bodies. Then the cameras shifted to the children who’d been taking antineoplastons for months or even years. With full heads of hair, they ran and laughed and played with the toys in the waiting room, all the while hooked up to IV bags of antineoplastons.
Another difference was that people talked. No one had spoken in the waiting rooms at Stanford or Harvard or any of the other oncology offices I’d visited. Yet here there was an immediate sense of comradeship, and the common bond, it seemed, was that we all had heard unfavorable prognoses, even death sentences, from mainstream doctors. We needed the support of others who had sought out Burzynski as a last shot.
“I was diagnosed eight weeks ago with a brain tumor,” Maria volunteered the first time I met her. “I was skiing, and I had a seizure right there on the slope.”
“I’m here with my sister, all the way from upstate New York,” an older woman said. “She has kidney cancer and is back with the nurses now. Dr. Burzynski said he didn’t know if the medicine would help.”
I spoke with a man, bald with pasty yellow skin, who’d been diagnosed with a lymphoma. “We followed the advice of the first doctor we saw, and he got a bone marrow transplant,” his wife explained. “But before he was even released from the hospital the lymphoma came back. The hospital just dismissed us. They said, ‘Well, we tried. Just go home and get your things in order.'” The wife was 28, the husband 30.
I cringed when a woman asked me outright, “What brings you here? What were you diagnosed with?” But looking around the room at the people chatting, exchanging phone numbers, making dinner plans, and hugging each other, I realized it was a question everyone asked and got asked. For families who were sacrificing savings, jobs, and even homes to pay for this treatment, the security of friendship was all they had left.
In the waiting room that first day, I scrawled my signature on numerous documents releasing Burzynski from responsibility for anything that might happen as a result of antineoplaston treatment.
When I was finally introduced to Burzynski, he gave me a squinty-eyed smile, the corners of his mouth stretching toward long sideburns. A short man with a heavy Polish accent and a tendency to mumble, he exuded friendliness as he studied my chart. “Usually this treatment has very good success with slow-growing non-Hodgkin’s lymphomas. Every four hours you would get a dosage of two types of antineoplastons. You would get a CAT scan after you had been on the treatment six weeks. The treatment would continue for four months after you have a clear scan because we need to ensure that all of the lymphoma is gone and will stay away.”
I had heard similar promises of a simple cure at other alternative clinics and had fled. Yet the words of the patients I’d spoken with before coming to Houston echoed in my head, compelling me to begin.
The following morning in another clinic, I had a semipermanent IV surgically inserted in one of my largest veins, directly above the heart. The slender white tube was held externally by two stitches and completely concealable under clothes. Back at Burzynski’s clinic I was ushered into a large room filled with leather recliners, a sort of classroom where patients were taught correct administration of antineoplastons. On one wall hung newspaper clippings about Burzynski, one describing how he was called during Jacqueline Kennedy Onassis’s final days of battling lymphoma.1 He was not allowed to bring antineoplastons to her bedside in New York, however, since the first civil trial had ruled he could practice the therapy in Texas only.
Despite the ruling, it was no secret that the majority of Burzynski’s patients were not from Texas. The clinic operated on a “don’t ask, don’t tell” basis. I gave a Texas address of distant cousins to whom my monthly supplies of antineoplastons would be mailed. My cousins would then ship them to me. Many patients had similar arrangements. Others restocked by flying to Texas frequently with several empty suitcases.
I received my pump, attached by thin translucent tubes to my first bags of medicine. The pump looked like an enlarged calculator with a number pad and a digital display. It fit snugly into a blue tote the size of a camera case. The nurse connected the medication to the catheter with a simple, painless twist, programmed the pump, and began infusion of the clear, sticky antineoplastons. Because of their urinelike composition, the medication smelled of an overused public toilet. As Burzynski had promised, I felt nothing as the drugs entered my system.
Over a few days at the clinic I learned how to connect and disconnect the IV bags, change the tubing, and set the pump. I also experienced my first side effects: I couldn’t eat because my stomach was churning, and I was too tired for anything much besides reading in bed. Finally a nurse gave me a shot of an anti-inflammatory steroid, told me my reactions were good-signs of “tumor breakdown”-and, with Burzynski’s consent, sent me home, where I returned to college for my senior year.2
Twelve weeks later my CAT scans revealed the first signs that the tumors had shrunk. I called everyone I knew, relaying the news as tears of relief dripped onto my IV bag. Each scan that followed showed more reduction, and by eight months my scans, read by my radiologist and oncologist in D.C., showed a 35 percent decrease.
Word from Burzynski’s office, though, was that my response was slow, and so I was instructed to increase my dosage steadily. I began feeling the toll: My joints hurt to the point that it was painful to bend, type, or write; I could hardly eat; and I often slept the entire day. Worse, though, was the thirst. No matter how much water I drank, I was always on the verge of dehydration. I complained to my oncologist about all the side effects, and she recorded them. I complained as well to Burzynski’s nurses who called each week to check up on me. They said they, too, were recording them. I didn’t mind that no one suggested remedies. The pain seemed small payment for steps closer and closer to a cure.
Then one day I got a call from someone on the phone chain set up by Burzynski patients, relaying the news of the doctor’s indictment. As I listened to the shaky, panicked voice, I sized up my dwindling supply of antineoplastons. It would last a few weeks. I hurriedly phoned the clinic, asking to have six months of medication reserved for me. The place was in disarray. Some staffers were reluctant to speak freely, fearful the phones were bugged. Newcomers were filling in for the usual receptionist who, after traumatic cross-examination during her grand jury testimony on Burzynski’s behalf, suffered a heart attack while driving home. Because of the commotion and demand, the clinic was allotting each patient a two-month supply of antineoplastons, which had to be picked up in person at the clinic in Houston.
“Only a two-month supply?” I pleaded. “It’s finally working, and that’s not enough.”
Even when a drug is backed by a large pharmaceutical company, the FDA approval process is arduous and expensive. Rather than “innocent until proven guilty,” the premise is essentially “ineffective until proven effective.” And effective means results within precise standards from several phases of trials determining a drug’s safety, whether it works in the test tube, then on animals, then on humans, and then the best possible protocol. Most trials eventually involve not just a drug company but doctors in multiple hospitals working together to test the drug on hundreds if not thousands of patients.
To the FDA, Burzynski was someone who had flouted this system, who by not collaborating with oncologists, a major medical center, or a drug company was refusing to play by the rules. After the injunction in 1983, Burzynski had applied to the FDA to begin clinical trials, but the agency said his application was incomplete. In 1989 Burzynski got the go-ahead for a clinical trial with breast cancer patients, but the FDA says he never submitted any data. Trials were approved again in 1993, this time testing brain tumor patients, but the agency says Burzynski refused to enroll enough patients and the trials were canceled. All the while, at his clinic, Burzynski continued to treat hundreds of patients at a time with antineoplastons.
Shipping an unapproved drug across state lines to patients who aren’t enrolled in a clinical trial is a federal offense. (States regulate medicine within their own borders.) After a decade of trying, the FDA had finally convinced a grand jury that Burzynski was doing just that.
The day after I received the call I skipped work and graduate school, and flew to Houston with my mom. We hauled cardboard boxes filled with IV bags of antineoplastons out of the clinic, into our rental car, and to UPS. Then we met up with the dozens of other patients who had dropped everything to come to Burzynski’s aid. We organized a picket for the following morning at the federal building in downtown Houston.
The wealthy businessman and his wife, the mother and her saved little boy, and the decorated policeman, as well as other patients, relatives, and friends, paraded around and around, shaking homemade signs and chanting, “FDA, go away! Let us live another day!” Parents pushed their-children in wheelchairs. The children chanted through puffed-up cheeks and waved signs as best they could with swollen hands.
Our efforts appeared to succeed, as the clinic stayed open. I returned to D.C., where Michele and I, along with lobbyists working on Burzynski’s behalf, took to Capitol Hill every week.
Now that I was being quoted in the press, I started receiving calls from members of Congress, reporters (from as far away as London), and even interested scientists. Some were anonymous tips on who our friends were on the Hill. But others wanted to keep me abreast of allegations against Burzynski that were surfacing. One caller had heard that Burzynski had been given an opportunity to affiliate with the prestigious M.D. Anderson Cancer Center in Houston but had balked. Another claimed that Burzynski’s annual take-home pay topped a million dollars.
As the charges multiplied, I asked Burzynski’s staff and the people leading our activist efforts for background information so I could accurately refute them. Had Burzynski refused help from a leading cancer center? Was he pocketing millions supplied by patients who had given up everything? But I was shunned. “You are beginning to remind us of E.,” I was told. E. had been blacklisted by the group for asking questions that leaned toward “the other side.”
Burzynski’s patience was waning, too. When a New York Times reporter asked him why a top medical journal had never published findings on his drugs, he responded, “To hell with them.” He went on to compare himself to Albert Einstein and Louis Pasteur and said, “[Treatments like mine] have never happened before in medical history, so if the New England Journal of Medicine refuses to publish my paper, why should I waste my time with these fools?”
There, in black and white, my doctor was admitting he’d lost interest in making his treatment more scientific. All this time I’d campaigned on Burzynski’s behalf, I had cast him as a victim of the FDA and its conventions. But now I wondered whether it was actually the other way around. Might Burzynski be getting in the way of science more than it was getting in his way?
Taking a chance on this insight, I telephoned acquaintances at the FDA. They said that in trying to set up clinical trials in 1993 Burzynski withheld information, was evasive and hard to work with, and had only six patients in the trial until a judge ordered him to enroll more. Their message: Your doctor is the one making it difficult. Then I phoned Burzynski’s clinic and spoke with the clinical trials director, Dean Mouscher. He had no medical training. After his father had become a patient of Burzynski’s for a brain tumor, Dean had felt the calling. “Do you know how much paperwork the FDA wanted?” he asked me. He explained how the agency kept asking for minuscule, nitpicky information, how the clinic would have had to hire extra help to meet the FDA’s demands, how it had a limited staff. He said the FDA also had to okay every new patient and was turning away people who needed treatment but didn’t fit the guidelines. Mouscher’s answer in effect confirmed the FDA’S view: The clinic wasn’t willing to follow the rules.
Still, our political efforts had shaken the FDA, and soon after Barton’s hearing the agency agreed to approve a new set of clinical trials on antineoplastons, enrolling each and every one of us-an unprecedented break with the usual practice of studying only patients who fit specific protocols.
But Burzynski was still facing trial on mail fraud charges. Ironically, as he was scheduled to appear in court for illegal shipment of antineoplastons, he was at the same time legally sending them to all 400 of his patients around the country as part of the FDA-sponsored trial.
As the court date neared, our campaign gained more momentum. Patients bought angel pins for “Dr. B.” and his staff to wear. TV news shows covered our effort. “If you convict the doctor,” asked Ted Koppel on “Nightline,” “are you sentencing his patients to death?”
Meanwhile, my side effects worsened. Burzynski’s staff of doctors continued to tell me my increasing pain wasn’t a sign of toxicity but was more “tumor breakdown,” evidence that the high doses were working. To assuage my pain, they filled me with prescription painkillers, steroids, and anti-inflammatory agents, toxic medications to counteract effects of the “nontoxic” treatment.
Nothing helped. I rarely slept since the medication forced me to get up nine or ten times a night to go to the bathroom. Because antineoplastons contain a lot of sodium, the more I upped my dosage, the more thirst became the center of my life. I would drink a gallon of water during the day and go through another gallon at night. And I was still thirsty.
My regular oncologist was also growing frustrated since she had no basis on which to judge my progress in conjunction with my increasing side effects. She didn’t know what to expect, what was typical, or how long to continue therapy before deeming it unsuccessful. Burzynski seldom had answers to these questions. Although the clinic’s nurses called me regularly (daily when the FDA tightened its reins), I was losing confidence that my reactions were being analyzed and compared with those of other patients.
Exasperated and unable to control my nausea, I found myself back in the office of the gastroenterologist who had originally diagnosed the lymphoma, begging for help. He immediately ordered biopsies, tests he said should have been required months before.
He was right. For what showed up in the biopsies was that the cancer cells had turned aggressive, spreading fast. From all my research, I knew what that meant: The lymphoma was now much more dangerous, but was also likely to respond to chemotherapy. In a couple of weeks I had stopped antineoplastons, moved to be closer to my parents, and, at Northwestern Memorial Hospital, begun six rounds of standard chemotherapy.
Standard. Just the word relaxed me. I snuggled into the comfortable arms of an established scientific therapy, where I was fully informed of my exact protocol, not to mention any and all anticipated effects gleaned from years of research and painstaking documentation.
People laugh when I tell them that despite losing my hair, chemotherapy was simple. Now I realize I was comparing the treatment to all I had been through while taking antineoplastons.
Though the chemotherapy was not completely effective, its failure finally made me eligible for a spot in a clinical trial on the promising treatment called monoclonal antibodies. The therapy was touted as a magic bullet, infusing human antibodies and doses of radiation directly to cancer cells, eliminating the toxicity and side effects that normally accompany cancer treatments. Conducted at Northwestern, this was just the sort of trial that the Stanford and Harvard specialists had advised me to watch-and-wait for.
Suddenly I was experiencing the drug development process as it was meant to be. At Northwestern I was grilled relentlessly on my symptoms, poked and prodded, and bombarded with tests. Yet after my experience with Burzynski I felt grateful to be monitored so closely. When the next patient complained of a side effect, I knew the doctor could research the exact day, the exact hour, I’d experienced the same problem. With Burzynski, the patient after me who complained of a side effect like mine was probably told: “It’s tumor breakdown.”
In two weeks the treatment was complete. A few months later I heard the words I’d waited three years for: “There is no sign of lymphoma anywhere.”
Burzynski’s criminal trial began in February 1997. The media, swamped the courthouse. Patients launched rounds of letter writing, took out huge newspaper advertisements, and raised hundreds of thousands of dollars for the legal defense. In May, when my local newspaper ran a photo of a smiling Burzynski trailed by the little boy who was saved, I knew without reading the story that Burzynski had been acquitted.
Two years have passed since I stopped using antineoplastons. I still catch my former doctor on television news and tabloid shows. He is always posed the same way, standing authoritatively next to MRI brain scans, pointing out the changes. First scan, deadly tumor. Second scan, after treatment, no tumor.
Every now and then a desperate patient sees my name in an old newspaper article and calls, seeking information about Burzynski, just as I had done with patients before me. I am never quite sure what to say. Such hope and yearning wait on the line, it is not right to squelch it. I think of Maria, who is still infusing antineoplastons for the remaining sliver of her brain tumor but who is alive and relatively active years past her prognosis for survival. This person on the phone does not have a brain tumor, though; she has ovarian cancer, something that Burzynski, I assume, would say he’s not sure antineoplastons can be effective on. But he’d be willing to try.
Willing to try. How can someone facing death disregard those words from a doctor? A part of me wants to tell the caller just to enjoy what’s left of her life, not to bother with long shots that might make those last months miserable and cost her family’s savings or her house. But I can’t say that. Even if the chance of antineoplastons working is one in 100, what if I’m discouraging that one?
My response would be so much simpler had Burzynski lived up to his responsibility as a scientist and healer by working with others to collect statistics on his medicine. But he didn’t.
After I discontinued his treatment, I requested that a copy of my records be sent to me. Flipping through page after page of recent daily entries, I read, “Condition unchanged… Patient doing well,” “Patient feels good.” I checked the name at the top; it was mine, although I couldn’t remember a single time in the past six months I had felt “good.”
The FDA released preliminary data from the clinical trial earlier this year showing that more than half of the treated patients had high levels of sodium in their blood. The condition may have contributed to seven deaths. Burzynski disputed the finding.
The wealthy businessman and his wife were among the patients at another congressional hearing this spring. This time they rallied passionately for the Access to Medical Treatment Act, which is currently being decided in Congress.
I can see both sides of the argument, for I have lived them. I believe in letting cancer patients try unproven treatments; had I been free to try monoclonal antibodies when I was first diagnosed, the lymphoma might have been wiped out in a few months rather than a few years. Yet when I look closer, the proposed law scares me. It means any doctor could claim to have a cure and prey on people desperately seeking help. It removes incentives for alternative doctors to conduct trials and contribute to science.3
I don’t know who’s right. But I do know that for 15 years the FDA and Burzynski have chased each other, spending precious time and money on legal battles rather than on contributing to science. Had everyone involved focused on what was truly important, antineoplaston therapy could have been proven or disproven as a viable treatment by now.
Instead, the cancer patient loses. And it shouldn’t take a brain surgeon, or an oncologist or the commissioner of the FDA to figure this out.
- This article apparently appeared in a tabloid. If this in fact happened, unless the Clinic had specific permission to release patient information, this would seem to be a big violation of patient privacy. It strikes us much in the same way the Clinic ghoulishly latched onto the story of Brittney Maynard, a cancer patient who made national news after electing physician-assisted suicide. According to a report in USA Today on 14 February 1994, when asked if Jackie was taking alternative therapies (which she was known to be interested in) her spokesperson replied, “I don’t believe so. She has great confidence in her doctors.”
- Nurses at the Burzynski Clinic have said things like this for some time, apparently. According to a 2000 article in US News and World Report which covered the story of Burzynski Patient Andrea W., who had a different tumor:Over the following six weeks, [Andrea’s mother] says, her daughter suffered side effects ranging from disorientation and high fevers to constant thirst. She and her husband […] repeatedly complained to clinic personnel. Each time, she says, “the nurses were jubilant. They said this [side effect] was a sign the tumor was breaking up.”Andrea was dead within the week. Burzynski’s staff have been feeding people this line for decades: getting worse is getting better. See the cases of Evan W, Justin B, Georgia M, Cody G, Leslie S, Domenica P., and Chase S. Think of Amelia S. And then think of the nurse who told John D.:“[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”Now we can add Cari U. to this list of patients who were misled.
- This is precisely the problem with so-called “Right to Try” laws. One such law just passed in Texas this summer.
Again, and as always, special thanks to the skeptical research ninja whose tireless work has made this article possible.