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.
5 Comments
Well lets hope your children never get cancer, cause we know you will fry their brains with chemo and they will die anyways. Why not give him a try? Why not approve his drugs and see what happens? Can it be worse than Phen-Phen? or the care given to our food today, there seems to be a recall every week now. I just want to have the choice to take his drugs or not. Why does the government get to decide what I put into my body?
I think the point this post is making is that the government does not decide what you put into your body – there are compassionate use programs designed to give desperate patients access to experimental drugs even before they are approved. And of course there are clinical trials that patients in need of new options can try as well. But neither of those paths should be about making a profit and charging patients hundreds of thousands of dollars – the profit-making piece is reserved for drugmakers who actually get FDA approval.
Trista – how is Burzynski supposed to continue employing the necessary people, cover necessary manufacturing costs, expand, etc. without charging patients and making a profit? It’s not possible. The Phase III trial alone is apparently going to cost ~$300 million (not a typo – $300 million)…
Bit of a stretch for an already-public company with a market cap of only ~$38 million (ruling out most venture capitalists and the investment would be seen as too risky for institutional investors) and a government refusing to provide grants or otherwise allocate capital for his research to see if this thing really has legs.
What makes this outfit truly unethical and dastardly is the obstinate refusal to publish their results and protocols so that the scientific community can assess their claims. The tragedy is that patients and entire communities (because this is where the money comes from, from fundraisers etc) are being scammed. $300million my backside – if Burzynski’s treatments worked as “advertised”, it would be trivial for him to demonstrate its increased effectiveness over proper cancer treatment, or, as in the case of some, spontaneous regression due to time.
Quite why the state board of Texas have not revoked this unethical person’s licence to practice medicine is beyond me.
If his treatment does not work how come a pharmaceutical company tried to steal his patents? And yes the Texas medical board tried unsuccessfully to prevent him from practicing… The board just could not hold the case! Look outside the box! Watch the “Burzynski” documentary (Amazon, Netflix) for a thrilling and shocking unveil of the outrageous and biased relationship of the FDA with big pharma. This man is offering individuals and families an alternative treatment that even if it is not 100% effective it is an alternative to frying peoples’ brain with radiation and destroying their livers and other organs with chemo just to put them in a vegetative state and extend their lives for a few months. And you know what? Hospitals also charge big bucks for chemo and radio. Sometimes you don’t pay a lot for it because other taxpayers do! If nothing else the man has a point and has big cojones! As far as the “Laura Fund” case the author mentioned, just take a look at her blog: her tumor is gone as of Aug 2012 after she used Dr Burzinski’s treatment! And her doctor had never seen a tumor remission like that! As far as the other little girl unfortunately she passed away this year. Again Dr Burzynski is not offering a 100% success rate and his treatment cost money like any other health treatment. All my respect to the Burzynskis and cancer patients of this world.