A cursory glance at the website of the Burzynski Research Institute Inc. turns up nothing unusual. The website showcases smiling patients and its shiny, mirror-windowed building. There's a contact number for patients to call and a prominent "Donate" button, implying that the institute is a nonprofit.
Look deeper, though, and you find a ruthless for-profit operation that gouges its patients, has been repeatedly slapped down by the FDA and the state medical board, makes unsupported scientific claims, and has bafflingly irregular financial statements. Do they go home at night and kick their dogs, too?
The institute is a train wreck in progress. One with an airplane crashing on top of it. And in a nearby farmhouse, there's a gas leak, and the farmer is just about to light a match. (Like that old Calvin and Hobbes strip.)
The institute drew attention in the science blogosphere recently when its self-appointed, unauthorized representative began issuing legal threats to bloggers that had criticized it, including 17 year-old Rhys Morgan, a high school student from Wales and a blogger for The Guardian. The Institute subsequently apologized for the inappropriate threats and dismissed the contractor responsible, but asserted the scientific validity of its product.
And it seems the more pressure that Burzynski receives from regulators and the scientific mainstream, the more he is adored by credulous patients looking for a miracle cure.
Take the Hope for Laura Fund, for example.
The Hope for Laura Fund is trying to raise £150,000 (US$235,410) to pay for antineoplaston treatment for Laura. According to the Hope for Laura website, the costs for the experimental treatment break down as follows: Initial "one-off" costs run £28,000 (US$43,943) to start treatment in the U.S. Those costs are described as tumor DNA testing, equipment and supplies, consultations, treatment plan, scans, blood tests and four weeks of training to administer treatment.
That's right, they're asking their own experimental subject to pay them to administer her experimental treatment to herself so that they can get the data from her and use it to develop a commercial product.
The actual therapy will cost Laura £60,000 (US$94,164) for 12 months of therapy. The treatment course is 12-18 months. And she'll pay another £6,500 (US$10,201) for MRI scans every four weeks at a private clinic in the UK.
Laura is a UK resident, as is the other current high-profile Burzynski patient, four-year-old Billie. The Billie Butterfly Fund has raised the required £200,000 (US$313,806) for Billie's antineoplaston treatment for her diffuse intrinsic pontine glioma.
Billie's uncle, Luke Bainbridge, published an essay about Billie's cancer and the fundraiser for her therapy at the Burzynski clinic in The Guardian on Nov. 19
In his TV documentary, Stanislaw Burzynski, founder and president of the Burzynski Research Institute, charges the FDA and the pharmaceutical industry with colluding to extort billions of dollars of research money from the federal government and the public by withholding the "real" cancer cure. He claims that his institute is safely and effectively curing cancer without the toxic side effects of conventional chemotherapy.
The accusation of suppressing the "real" cancer cure has gained a great deal of traction over the years, and has ironically made the medical establishment hesitant to speak out against unproven alternative therapies, because to do so plays into the conspiracy theories. It's practically a seal of approval in the minds of those who believe that big pharma is hiding a real cure. And it encourages people who want to believe there is a real cure outside of conventional medicine.
It's unconscionable to take advantage of the fears of dying patients. The Burzynski Research Institute may look like a biotech company, and it may have a pretty convincing website. But I have never known a legitimate biotech company that would exploit its patients and steal the legacy that would otherwise put their orphaned children through college.