Killing Us Softly

by Dr Paul Offit

  The shark cartilage fad took its toll, contributing to the possible extinction of the spiny dogfish shark and the blue shark, both of which are now at risk. Sadly, some people used shark cartilage instead of conventional therapies that would have saved their lives, most notably a nine-year-old Canadian girl with a brain tumor. After the tumor had been removed, doctors recommended a course of radiation and chemotherapy that offered a good chance of survival. Her parents opted for shark cartilage instead. She was dead in four months.

  Shark cartilage is still available in drugstores and on the Internet.

  9

  Sick Children, Desperate Parents: Stanislaw Burzynski’s Urine Cure

  You don’t really understand human nature unless you know why a child on a merry-go-round will wave at his parents every time around—and why his parents will always wave back.

  —William D. Tammeus, columnist, The Kansas City Star

  Although many nonstandard therapies are available, the story of unproven cancer cures at the beginning of the twenty-first century has largely been the story of one man. A man whose early career was promoted by author Gary Null in Penthouse magazine, by Sally Jessy Raphael on her daily talk show, by Geraldo Rivera on ABC’s 20/20, and by Harry Smith on CBS This Morning. A man who, when hounded by the FDA, had the unsolicited support of hundreds of patients and several United States congressmen. A man who, in 2010, was the subject of a feature-length documentary simply titled Burzynski.

  Billie Bainbridge was born on April 25, 2007, in the town of Exeter, England. When she was four years old, her mother, Terri, noticed that something was wrong. “We had a cuddle in bed while she had a nap and I thought she seemed really hot,” recalled Terri. “When she woke up, her head shook in like a mini-seizure and then she threw up.” The next day, Billie was fine. Then she worsened. “Over the next couple of weeks she started talking in a weird voice and I thought it was just her messing around and kept telling her to stop. But then a few days later her eyes seemed a bit droopy and she was starting to [drool]. I thought she was having a stroke.”

  Two days later, Billie was taken to the Royal Devon and Exeter Hospital for an MRI of her head. The diagnosis: brainstem glioma, an incurable form of brain cancer. Brainstem gliomas are treated with radiation, which initially shrinks the tumor and improves symptoms. But the glioma invariably returns, eventually becoming resistant to radiation. Chemotherapy doesn’t work, either. The doctors explained that Billie’s chance of recovery was slim. In all likelihood, she would be dead in a year.

  But Sam and Terri Bainbridge weren’t giving up. They had heard about a miraculous medicine in Houston, and they were going to do to whatever it took to get it. The cost, however, was astronomical, estimated at about £200,000, or $300,000. And Terri was having her own problems, having recently been diagnosed with breast cancer. The Bainbridges took their case to their friends and neighbors. “I refuse to believe that Billie will die,” said Terri. “And I’m going to do everything I can to make sure she doesn’t.”

  Within weeks, everyone in England knew about Billie and Terri Bainbridge. Peter Kay, a British comedian and actor, staged a series of benefit concerts at the Blackpool Opera House. The band Radiohead donated a signed guitar, which sold for £9,000. Other bands, like Badly Drawn Boy, I Am Kloot, and Everything Everything, staged charity shows in Manchester. The Munchkins Day Nursery sold raffle tickets for £100, with a chance to win one year’s tuition, worth £20,000. (The winners, Christian and Alex Brook, donated the money to the Bainbridges and continued to pay their son’s tuition.) The local rugby team, the Exeter Chiefs, grew their sideburns, hoping to raise £2,000. A charity ball raised £12,000. Two cyclists raised more than £5,000 biking from Edinburgh to Exeter. A series of bake sales each raised £1,000. International celebrities like Anthony Cotton, Cheryl Cole, and Michael Bublé also pitched in. An anonymous philanthropist from the United States donated $25,000. In the end, the Bainbridges had raised £200,000. On September 17, 2011, only three months after Billie’s first symptoms, the Bainbridge family was on a plane to Houston. “The Texas Clinic is our last hope,” said Sam. Soon they would meet its director.

  Stanislaw Burzynski was born in Poland in 1943. By the time he had graduated from the Medical Academy of Lublin, in 1967, he had published fourteen papers, a remarkable accomplishment. The following year he received a PhD for his thesis, titled “Investigations on Amino Acids and Peptides in Blood Serum of Healthy People and Patients with Chronic Renal Insufficiency.” Burzynski had an idea. He believed that patients with long-standing kidney disease didn’t get cancer as often as people with normal kidneys. And he believed the answer could be found in their urine. Burzynski reasoned that patients with kidney disease didn’t get cancer because, unlike people with normal kidneys, they didn’t excrete certain lifesaving substances that had an anti-cancer effect; he called these substances antineoplastons (literally, “against new growth”). Burzynski believed that if he could isolate these cancer-preventing peptides from the urine of healthy people, he could cure cancer.

  After completing a residency in internal medicine in Poland, Burzynski traveled to Baylor Medical College, in Houston, where he rose from research associate in the department of anesthesiology to assistant professor. In 1974, he isolated a series of peptides (strands of amino acids smaller than proteins) that inhibited the growth of bone cancer cells in the laboratory. The National Cancer Institute, intrigued by his findings, gave him a three-year grant, which resulted in six publications—the last of which defined his life’s calling. “According to our definition,” he wrote, “antineoplastons are substances provided by the living organism that protect it against development of neoplastic growth [without] significantly inhibiting the growth of normal tissues.” This was a major breakthrough. At last, cancer victims would no longer suffer the tortures of radiation and chemotherapy. They could be treated with antineoplastons, a natural product without side effects. The National Cancer Institute didn’t see it that way, failing to immediately renew Burzynski’s grant.

  When he lost his funding, Baylor administrators gave Burzynski a choice. He could either stay in the department of anesthesiology and do research consistent with its goals (which weren’t curing cancer) or he could leave. Burzynski left, renting a 2,500-square-foot garage in Houston that later became the Burzynski Research Institute. His first task was to isolate large quantities of antineoplastons. So in the heat of the Houston summer, Stanislaw Burzynski collected more than a hundred gallons of urine from public restrooms and local prisoners. From this he isolated antineoplastons that he called AS2.1 and A10.

  Although Burzynski had no specific training in cancer, the FDA granted him permission to test antineoplastons in small clinical trials. He had no shortage of patients, including those with advanced cancers of the brain, colon, pancreas, breast, prostate, rectum, lung, kidney, and bladder—cancers so far gone, the medical establishment had given up on them, cancers that were a death sentence for their sufferers. But Stanislaw Burzynski wasn’t giving up. He had faith in the power of antineoplastons.

  In 1979, Gary Null, a popular critic of mainstream medicine, wrote an article in Penthouse titled “The Suppression of Cancer Cures.” Null told the story of a sixty-three-year-old man with lung cancer that had metastasized to his brain. After six weeks of antineoplastons, the lung cancer was gone. After a few more weeks, the brain metastases were gone, too. According to the article, forty-one patients with advanced cancers had been treated, with “definite improvement in 86 percent.” This was Burzynski’s first major exposure to the media, and it dramatically increased his business.

  Two years later, Geraldo Rivera, a correspondent for ABC’s 20/20, aired a show titled “The War on Cancer: Cure, Profit or Politics?” Again, Burzynski was cast as an unrecognized hero. Rivera compelled his audience with stories of hope and survival:

  “In early 1979, Steve Hipp got the dreaded news,” said Rivera. “Steve had cancer. His doctor in Michigan summed it up this way: ‘We
were waiting for him to exit.’ Steve’s doctor recently confirmed to 20/20 that his tumor has shrunk.”

  “Al Swazeland is from Canada,” said Rivera. “In late 1978, Al discovered that he had bladder cancer. Six operations later, his only chance was removal of his bladder, which meant he would need a urine bag in his abdomen for the rest of his life. Al just informed us that as of now he has no active tumors.”

  “Jocelyn Chancey’s inoperable breast cancer had spread to her bones,” said Rivera. “I talked to about fifteen doctors and the consensus was that she was terminal,” said her husband. But like Steve Hipp and Al Swazeland, Jocelyn Chancey had had a miraculous response to antineoplastons. “Jocelyn Chambers’s bone scan shows that she is in partial remission,” said Rivera, “and a more recent bone scan shows further improvement.” “I sleep good at night,” said Jocelyn.

  Only four years after Stanislaw Burzynski had opened the Burzynski Research Institute, he was curing patients with no hope of a cure. Still, antineoplastons hadn’t entered the mainstream. Rivera knew why. “There is a cancer establishment,” he said, “and it’s basically divided into two parts. One is our most lavishly funded government health agency. It’s called the National Cancer Institute. The other is our wealthiest private charity, the American Cancer Society. To critics, their combined function has a stranglehold effect, creating a kind of monopoly on cancer research and information.” According to Rivera, cancer doctors weren’t sympathetic caretakers; they were ruthless businessmen. “Cancer is not just a disease,” he said; “it’s a political and economic phenomenon, a $30-billion-a-year business”—one that apparently had no intention of including the likes of Stanislaw Burzynski. “If somebody were able to bring some new, innovative idea into the fight against cancer,” Burzynski told Rivera, “then finally the American public will ask the big institutions, ‘What are you doing with all this money? Where are your results?’ Finally, they would have to answer to the American public!”

  The Burzynski miracle marched on. Seven-year-old Dustin Kunnari received antineoplastons for a brain tumor; six weeks later, the tumor was gone. Tori Moreno’s advanced brain cancer was gone in five months. Antineoplastons had also cured the brain tumors of Pamela Winningham, Crystin Schiff, Zachary McConnell, and Thomas Wellborn. And they had cured Randy Goss’s kidney cancer.

  In 1995, Harry Smith, of CBS This Morning, brought several patients cured by antineoplastons onto his show. “It’s like cancer never happened to me,” said Neal Dublinsky, of Los Angeles. “Houston was the city where my life was saved.” In 2001, Thomas Elias wrote The Burzynski Breakthrough: The Most Promising Cancer Treatment and the Government’s Campaign to Squelch It. Elias told the story of Burzynski’s persecution by the medical establishment. And he told the stories of patients who had been saved by antineoplastons despite the best efforts of cancer specialists to ignore the miracle in front of them.

  In 2010, the documentary Burzynski aired throughout the country. Written and directed by Eric Merola, Burzynski featured the recovery of Jodi Fenton and Jessica Ressel from brain cancer and Kelsey Hall from adrenal cancer—all because of antineoplastons, all despite the grim prognoses of so-called cancer specialists. The movie also showed attempts by FDA commissioner David Kessler to shut down Stanislaw Burzynski. “It constitutes nothing less than one of the worst abuses of the criminal justice system I have ever witnessed,” said Congressman Richard Burr of North Carolina. Burzynski sat calmly in the midst of the maelstrom, unwavering, undaunted. He was a modern-day Semmelweis whose demonstration that hand washing could stop the spread of germs was ignored by his peers. “It is obvious that Dr. Burzynski has made the most important discovery in cancer ever,” said Dr. Julian Whitaker.

  By 2011, the Burzynski Research Institute, located in Stafford, Texas, housed four chemists, four biologists, three pharmacists, and an antineoplaston production facility occupying more than 46,000 square feet—the size of a small biotech company.

  So why haven’t antineoplastons become part of routine cancer care? Surely patients haven’t made up their stories—surely people don’t say they’ve been cured of terminal cancer when they haven’t or say they’re still alive when they’re not. A closer look, however, shows that Stanislaw Burzynski’s antineoplaston cure isn’t exactly what it’s claimed to be.

  In November 1982, several Canadian residents who had received antineoplastons wanted to be reimbursed by their insurance company. In response, Canadian researchers Martin Blackstein and Daniel Bergsagel traveled to Houston. This was the first independent review of Burzynski’s program. Blackstein and Bergsagel asked Burzynski to provide four pieces of information: (1) a biopsy proving that the patient had had cancer; (2) records of treatments before antineoplastons; (3) records of treatments with antineoplastons; and (4) radiological studies like X-rays and CT scans. Burzynski provided data from his fourteen most successful cases.

  Although Blackstein and Bergsagel had been clear about what they’d wanted, what they’d gotten was disappointing. Records were scant and incomplete. Two patients had CT scans before and after antineoplastons: no change. Two other patients had been cured by standard treatments before seeing Burzynski. Blackstein and Bergsagel couldn’t find any objective evidence that antineoplastons worked. “We were surprised that Burzynski would show us such questionable cases,” they wrote. “We were left with the impression that either he knows very little about cancer … or else he thinks that we are very stupid and has tried to hoodwink us.”

  Blackstein and Bergsagel also asked to see the records of four other patients whom Burzynski had described in a medical journal in 1977. Again, the results were disappointing. Three of the patients had died from their cancers. The fourth had been cured by surgical removal of a bladder tumor.

  The second independent review of Burzynski came in 1985, again from Canada. This time investigators from the Canadian Bureau of Prescription Drugs reviewed the records of thirty-six patients. Thirty-two had died from cancer without benefit from antineoplastons. Of the four remaining patients, one had died after a slight regression of the tumor; one had died after being stable for a year; and two were still alive at the time of the survey. Of the two who were still alive, one had metastatic lung cancer and the other cervical cancer—neither had been cured.

  In 1988, Sally Jessy Raphael, a popular talk show host, interviewed four patients treated by Burzynski whom she described as “miracles.” Four years later, Inside Edition followed up. Two of the four had died of cancer, and a third was in the midst of a recurrence. The fourth had been cured of a bladder cancer that had had an excellent prognosis.

  In 1990, the United States Congressional Office of Technology Assessment reviewed journal articles published by Burzynski and concluded, “Despite a substantial number of preliminary studies, there is still a lack of valid information to judge whether this treatment is likely to be beneficial to cancer patients.”

  As patient testimonials mounted, independent researchers offered to test antineoplastons. One was Joseph Jacobs, director of the newly created Office of Alternative Medicine (OAM), later to become the National Center for Complementary and Alternative Medicine. Burzynski resisted. “OAM was willing to buy the research assistance for [Burzynski] to design a good protocol and to set up a data-monitoring committee,” said Jacobs. “There have been plenty of opportunities. And those clowns—his supporters—were doing everything they could to wreck those opportunities.”

  In 1991, two investigators from the National Cancer Institute visited the Burzynski Research Institute and, after reviewing clinical histories, pathology slides, and radiological studies from seven patients, concluded that he might be onto something. They agreed to fund an expensive clinical trial in patients with brain tumors. This was Burzynski’s single best chance to convince the FDA to license his drug.

  After years of haggling with Burzynski about which patients should be included, the National Cancer Institute published its study. The collaboration involved researchers from the Ma
yo Clinic in Rochester, Minnesota, the Memorial Sloan-Kettering Cancer Center in New York City, and the National Cancer Institute, in Bethesda, Maryland—three of the most prominent cancer centers in the world. It was the first time a meaningful publication about antineoplastons didn’t have Stanislaw Burzynski’s name on it. The results were disappointing. All nine patients treated with antineoplastons died; none had had any evidence of a response to treatment. And despite Burzynski’s claims to the contrary, antineoplastons were toxic: some patients suffered nausea, vomiting, headaches, and muscle pain; others, excessive sleepiness, confusion, and seizures. Burzynski was furious. Convinced that the National Cancer Institute had purposefully ruined his work, he said, “They sabotaged the trial. They were trying to give the treatment for a very short period of time, like for instance a couple of weeks or months. And then, of course, the patient was dying after that. It was completely unethical. It was horrible.”

  In 1992, Saul Green, a biochemist, summarized what was known about antineoplastons AS2.1 and A10 in a paper published in the Journal of the American Medical Association. He explained that AS2.1 was phenylacetic acid (PA), a potentially toxic substance produced during normal metabolism. Typically, phenylacetic acid is detoxified by the liver—where it becomes phenylacetylglutamine (PAG)—and is then excreted in the urine. A10 is essentially PAG. Burzynski had claimed that AS2.1 and A10 worked by inserting themselves into DNA and changing the genes that cause cancer. However, PA and PAG are too big to fit into DNA. Green concluded, “The treatment for cancer with substances called antineoplastons actually involves the use of two simple commercially available organic chemical compounds, PA and PAG. None is a peptide, none has been shown to ‘normalize’ tumor cells, none has been shown to actually [insert] into DNA, and none has been shown to be active against cancer in experimental tumor test systems.”