Killing Us Softly Page 15
Further investigations led to further disappointments.
During the 1990s, three independent reviewers evaluated 963 patients who had received antineoplastons. All three were cancer specialists: Howard Ozer, director of Allegheny University Cancer Center in Pittsburgh; Henry Friedman, professor of pediatrics at Duke University and chairman of the brain tumor committee of the Pediatric Oncology Group; and Peter Eisenberg, a community oncologist practicing in Marin County, California. All agreed that Burzynski’s protocols were poorly designed, his data uninterpretable, and the toxicities of antineoplastons potentially dangerous. Most upsetting was Burzynski’s treatment of a four-year-old boy with a potentially curable brain tumor. Treated with antineoplastons only, the boy’s cancer worsened.
By 1995, the FDA had had enough, charging Stanislaw Burzynski and his clinic with seventy-five counts, including criminal contempt, mail fraud, and violations of the Food, Drug, and Cosmetic Act. Congressman Joe Barton of Texas rushed to Burzynski’s aid, holding a hearing that allowed others to tell their side of the story. Patients and parents carried placards proclaiming, “Say No to Chemo,” while chanting, “FDA go away! Let me live another day!” In 1997, the government failed in two attempts at conviction: one trial ended in a hung jury, the other in a not-guilty verdict.
For many cancer sufferers, Stanislaw Burzynski had become a countercultural hero. But not to everyone. “It’s a travesty of everything we fought for as activists,” said Fran Visco, president of the National Breast Cancer Coalition. “If this is the type of research that is permitted to go forward, it’s a threat to our lives and a threat to continued support of science. How is he getting away with it?” Ellen Stovall, executive director of the National Coalition for Cancer Survivorship, agreed: “From this moment on we are not going to let him rest. He is insulting the intelligence of the American people by calling his therapy nontoxic and alternative. I would like to see Dr. Burzynski’s congressional patrons apologize to the American people.”
During the 1980s and ’90s, three companies showed interest in antineoplastons: Sigma Tau Pharmaceuticals of Italy, Chugai Pharmaceuticals of Japan, and Elan Pharmaceuticals of Ireland. One by one they dropped away. The medical director of Sigma Tau wrote, “Dr. Burzynski was informed on January 31, 1991, that Sigma Tau did not intend to proceed with the development of the antineoplastons. We have studied antineoplastons A10 and AS2.1 … in human and [mouse] tumor cell lines. … On the basis of these results the project has been discontinued.” Burzynski saw the rejections as a conspiracy among cancer doctors willing to lie to save their careers. “Most of the oncologists—I’m talking about reputable oncologists—they work for pharmaceutical companies,” said Burzynski. “They work in clinical trials; they receive various types of incentives from pharmaceutical companies. They will do everything they can to lie. … We have a lot of evidence about some of these doctors who are dishonest, who are liars, who cheat.”
In truth, it’s not that hard to prove that new cancer therapies work. Paul Goldberg, editor of The Cancer Letter—a Washington, D.C.–based publication covering cancer research and drug development—has commented on the strange case of Stanislaw Burzynski. “Drug approval is a technical, time-consuming, and costly process,” he said. “Nonetheless, thousands of anticancer compounds have been shown to be effective—or dismissed as ineffective—over the decades since Dr. Burzynski initiated his experiments.” Henry Friedman, the oncologist from Duke University who had independently reviewed Burzynski’s data, agreed: “Despite thousands of patients treated with antineoplastons, no one has yet shown in a convincing fashion … that the therapy works. You have to understand how incredible that is. Because normally you can do a cancer study on as few as thirty or forty patients.”
One cancer drug’s story is particularly instructive. In 2002, an article was published in the scientific journal Nature showing that malignant melanoma cells contained an abnormal gene called BRAF. Investigators reasoned that a drug that blocked the protein made by this gene could work. In response, a small biotech company in Berkeley, California, called Plexxikon—not much bigger than the Burzynski Research Institute—took an interest. They made a drug called PLX4032 and—under the auspices of Paul Chapman, an oncologist at Memorial Sloan-Kettering Cancer Center—tested it on thirty-two patients with advanced melanoma. All saw their tumors shrink. The standard chemotherapy at the time, dacarbazine, slowed tumor growth in 15 percent of patients for two months. PLX4032, on the other hand, halted tumor growth in 80 percent for eight months. Encouraged, company researchers performed a definitive trial. They randomly assigned 680 patients to receive either dacarbazine or PLX4032. The results were clear: patients who received PLX4032 lived longer. On August 17, 2011, the FDA approved PLX4032 for the treatment of malignant melanoma. The process took only a few years and involved fewer than a thousand patients.
Stanislaw Burzynski has administered antineoplastons to thousands of patients for decades and has never published a definitive study comparing his drug with standard therapy. “He’s convinced there’s no need for studies,” says Peter Adamson, chairman of the Children’s Oncology Group at the Children’s Hospital of Philadelphia and professor of pediatrics and pharmacology at the Perelman School of Medicine at the University of Pennsylvania. “He runs a risk with no benefit. Everyone who comes there is paying him to do it, so he has absolutely nothing to gain and everything to lose.”
In the world of alternative cancer cures, Stanislaw Burzynski is a strange case. Not only is he a brilliant man—one of the youngest to hold both MD and PhD degrees from his native Poland—he also presents himself as a caring man. Craig Malisow, of the Houston Post, wrote, “Patient testimonials almost always contain the phrase ‘treated like family.’ His warm bedside manner, and that of his staff, is often in stark contrast to patients’ experiences in mainstream hospitals.” For these reasons, authors like Thomas Elias and filmmakers like Eric Merola and celebrities like Sally Jessy Raphael and Geraldo Rivera and reporters like Harry Smith paint Burzynski as an unappreciated hero. But too many things about Stanislaw Burzynski don’t add up. He claims to have a cure for cancer, but when the Office of Alternative Medicine offered to test it, he balked. And when researchers at the National Cancer Institute gave him a chance to bring his ideas into the mainstream, he argued they didn’t know what they were doing. As a result, four decades have passed and we still don’t have any convincing scientific evidence that antineoplastons work.
Still, one could argue, where’s the harm? Burzynski rarely takes care of patients with treatable cancers. He takes care of patients, like Billie Bainbridge, whose prognoses are grim. “He’s not treating children with leukemia or Wilms tumor,” admits Peter Adamson. But false hope, he argues, isn’t a gift: “When I meet with families whose cancer has no curative path, the discussion is ‘How can we leave as many options open as possible?’ When an experimental option shows some promise, we move it up the list. But when an experimental option—like Burzynski’s—is ineffective, we take it off the list. It doesn’t take that many children to know that something doesn’t work.”
John Maris, chief of the division of oncology at the Children’s Hospital of Philadelphia, agrees. “If you’re diagnosed with brainstem glioma [like Billie Bainbridge],” says Maris, “your chance of cure is very low. But there are therapies that can extend life and extend life with quality. What many of us in the area of refractory cancers are trying to do is take a page out of the AIDS paradigm—try to make it a chronic disease and hope that science can catch up and offer new realistic therapies. I worry when patients who could benefit from evidence-based investigational therapies bail out and go to Houston [to see Burzynski]. I am quite certain as a scientist that antineoplastons are completely worthless. And I say that as someone who has spent a fair amount of time looking for new therapies for cancer, because I’m sick of watching children die from this disease.”
In September 2011, Billie Bainbridge began antineoplaston therapy. During t
he first five weeks of increasingly greater doses, she got sicker and sicker. She lost her appetite and started vomiting. At one point she had to be admitted to Texas Children’s Hospital. Facing severe dehydration, malnutrition, and weight loss, Billie had to have a feeding tube placed into her stomach. Because the Burzynski Clinic doesn’t have a clinical facility, and because Burzynski doesn’t have admitting privileges to Texas Children’s Hospital, her care was out of his hands.
Perhaps no one has a better view of Stanislaw Burzynski’s operation than Jeanine Graf, an associate professor at Baylor College of Medicine and medical director of the pediatric intensive care unit at Texas Children’s Hospital. Graf has taken care of several of Burzynski’s patients at the end of their lives. “Why do this?” asks Graf, arguing that Burzynski’s treatments only lead to greater tragedy. “It only removes families from their home, putting incredible stress on them. I’m forced to say that ‘we don’t have anything to offer, and now your child is in an ICU, and do you want to have your child die in an unfamiliar place with people who don’t know you, no family around?’ That is just not the right way to end your life.”
Graf occasionally faces the task of figuring out how to get critically ill children whose parents are now broke back to their homes, surrounded by family and friends. “We have picked up the tab to transport some of these children back home because they’ve come from so far and they’re absolutely depleted of their finances,” says Graf. “Luckily, we have a robust charity committee. I can make a case that this is a compassionate thing to do for this family and we do it.”
In October 2011, Billie returned to England, continuing to receive antineoplastons intravenously—and continuing to suffer from the drug. “It is making her more and more tired,” said Terri, “which is making it difficult to get her to eat enough.” By late October the vomiting had again become so severe that her treatment was stopped and she was admitted to a local hospital with dehydration.
In England, where Billie Bainbridge continued to receive national attention, child advocates and bloggers commented on the case. One science blogger, referring to the £200,000 raised by the Bainbridges to pay Stanislaw Burzynski, wrote, “Peter Kay is right to raise money for this family. And good luck to him. But it would be a dreadful wrong for this money to end up in the hands of someone [else]. The money could make a big difference to this family. It could allow both mother and daughter to be looked after in comfort, without worrying about mortgages or jobs. It will allow them to be together. It will not perform miracles. Nor will it make the pain go away. But such a simple gift will indeed be an act against cynicism and false hope.”
On June 1, 2012, one year after her diagnosis, Billie Bainbridge lost her battle with cancer. “She was incredibly brave,” said her family, “and never complained or asked why.”
Burzynski’s most recent activities have been even more demoralizing. He now claims that antineoplastons treat not only cancer but Parkinson’s disease, AIDS, and neurofibromatosis. Burzynski has also taken a step that puts him firmly in the cabinet of sideshow hucksters who have been selling their cure-alls since the first traveling carnival. He is promoting a line of creams and capsules with the brand name Aminocare, described as “The Genetic Solution for Anti-Aging.” For $120, you can buy Aminocare A10 gel caps, which “aids the regulation of normal cell division”; for $50, Aminocare Skin Cream, which “slows the signs of aging by stimulating natural cell division”; and for $60, Aminocare Brain Longevity Forte, which “helps maintain normal brain function.”
Perhaps no one has offered a bigger stage for Stanislaw Burzynski’s antineoplastons and other alternative cancer cures than Suzanne Somers, who is promoting them in her books as well as on CNN, MSNBC, and Fox. In Knockout: Interviews with Doctors Who Are Curing Cancer and How to Prevent Getting It in the First Place, Somers touts antineoplastons, coffee enemas, and miracle diets. The book stands in stark contrast to another book published at the same time, Siddhartha Mukherjee’s The Emperor of All Maladies: A Biography of Cancer. Both tell the story of cancer. And both have sold well. Only one, Mukherjee’s, won the Pulitzer Prize. And only one, Mukherjee’s, tells the story of cancer from a scientist’s perspective.
Mukherjee pulls no punches. From ancient times to the modern era, the story of cancer treatment has been one of collateral damage. Surgery removes cancerous tissue as well as normal tissue. Radiation and chemotherapy kill cancer cells as well as normal cells. But Mukherjee’s book also describes a new trend in cancer therapy: specificity.
During the past few decades, scientists have begun to identify cancer-causing genes called oncogenes. And they’ve developed drugs like Herceptin and Gleevec that target the products of these genes, a major advance. Because these drugs are specific for cancer cells, their side effects are far more tolerable than those from standard chemotherapy. Gleevec, for example, has changed the face of one type of chronic leukemia in adults, a diagnosis that at one time was a death sentence. Now patients can survive for decades.
Nowhere in Somers’s book do we learn about oncogenes and their products, and nowhere in Mukherjee’s do we learn about coffee enemas and miracle diets. It’s as if they were written in parallel universes. In Mukherjee’s universe, drugs have to be science-based, thoroughly tested, and proven to work before they’re licensed by the FDA. In Somers’s universe, treatments aren’t science-based, proven to work, or licensed by the FDA; rather, they’re promoted with testimonials and sold on websites.
What is perhaps most disappointing is that television producers have consistently chosen Somers over Mukherjee to educate their viewers. Siddhartha Mukherjee is a Rhodes Scholar, an assistant professor of medicine at Columbia University Medical Center, and a graduate of Stanford University, the University of Oxford, and Harvard Medical School. He has devoted his life to caring for cancer victims and researching ways to cure them. Suzanne Somers was Chrissy on the hit TV series Three’s Company and the promoter of the popular Thigh-Master. She has spent much of her life extolling unproven cures in books and selling them on her website. To producers, the choice of Somers over Mukherjee has apparently been an easy one.
Part VI
CHARISMATIC HEALERS ARE HARD TO RESIST
10
Magic Potions in the Twenty-First Century: Rashid Buttar and the Lure of Personality
Me and Shrek took some magic potion, and now we’re sexy!
—The Donkey, Shrek 2
My father was the head of a sales force that sold men’s shirts. Every six months, salesmen from across the country would meet in Baltimore and my father would teach them how to sell. His message was clear: salesmen weren’t selling shirts; they were selling themselves.
Even though I was just a little boy, my father let me go to those meetings. (I went for the food.) But I still remember the names of most of those salesmen. I really loved those guys. They were funny and affable and kind. And even though I knew that their stories were exaggerated or fabricated, it didn’t matter. I enjoyed being around them.
My other childhood memory of the lovable huckster came in the form of a Twilight Zone episode that aired in October of 1959. Titled “One for the Angels,” it featured two veteran actors: Ed Wynn, the rubber-faced comic who starred as the Toymaker in Babes in Toyland and Mr. Dussell in The Diary of Anne Frank, and Murray Hamilton, best known as the mayor of Amity in the 1975 movie Jaws.
The episode opens with Wynn standing behind a suitcase propped on a wooden stand. “Right here, ladies and gentlemen,” he shouts. “Special July clean-up sale!” Rod Serling, host of The Twilight Zone, sets the scene: “Man on the sidewalk named Lou Bookman. Age: sixtyish. Occupation: pitchman.”
Bookman slowly closes his suitcase, folds up the stand, and returns to his stoop, where he is immediately mobbed by several children. “What are you selling today, Lou? Toys?” asks one, an eight-year-old named Maggie. Bookman, who loves children, gives a wind-up robot to each of them.
When Bookman returns to his apartment, he fin
ds Murray Hamilton sitting on a chair, thumbing through a small notepad. Hamilton is the angel of death. After confirming Bookman’s age, birthplace, employment history, and parents’ names, he says, “Your departure is at midnight.” “My departure?” asks Bookman, horrified. To remove any doubt about his intentions, the angel touches a flower, which wilts and dies.
Bookman pleads for his life. “But I have some unfinished business,” he says. “Between you and me, I’ve never made a truly big pitch, enough for the skies to open up. You know, a pitch for the angels.” The angel relents, allowing Bookman one last pitch. But Bookman has no intention of keeping his promise. When the angel realizes that Bookman has conned him, he selects an alternate.
On the street in front of Bookman’s apartment, the sound of screeching tires is followed by screams. Maggie, unconscious, is lying on the ground. Seeing the consequences of his actions, Bookman recants. “Take me!” he pleads. “She’s just a little girl. She’s only eight years old.” But it’s too late. The angel of death tells Bookman he’ll be back at midnight to claim her.
Fifteen minutes before midnight, the angel arrives at the stoop of Maggie’s apartment. Bookman, who has been waiting for him, opens his suitcase and takes out an ugly cotton tie. “Take this lovely tie here, for instance,” he says. “What does this look like to you?” “It looks like a tie,” the angel deadpans. “Ladies and gentlemen,” expounds Bookman. “If you will feast your eyes on probably the most exciting invention since atomic energy. A simulated silk so fabulously conceived as to mystify even the ancient Chinese silk manufacturers—an almost unbelievable attention to detail. A piquant intervening of gossamer softness.” Riveted, the angel buys the tie.