Zeno's Blog

As a last hope for cancer sufferers, his name regularly appears in the media with many a fund-raising appeal launched to enable sufferers to travel to the US to visit his clinic and be treated by the great man himself.

Even a cursory search of the Internet will find many grateful customers of Dr Stanislaw R Burzynski telling how he single-handedly saved their lives, when the NHS or other cancer experts had failed or who could do no more.

If it was your last hope — or the last chance for your child — then who could blame you for wanting to give it a try?

After an uncritical article in The Observer about the heartbreaking tale of a young girl diagnosed with a brain tumour and whose parents were desperate to raise the necessary money to take their daughter to see Dr Burnzynski for treatment, Andy Lewis — quite understandably — felt compelled to write about it: The False Hope of the Burzynski Clinic.

It was not long before Andy received a threatening email from someone claiming to represent the clinic. The tactics this representative used to try to silence Andy and to force him to take his blog post down can be gauged by the title of Andy’s subsequent post: The Burzynski Clinic Threatens My Family. Despicable.

Because there are so many unanswered questions about his treatment, the spotlight of skeptical thinking has been shining brightly on the controversial promoter of his own proprietary, ‘pioneering’ cancer treatments, but the intensity has been turned up all the way to eleven in the aftermath of these and other recent threats.

There has been an avalanche of blog posts in the last few days and it is to be hoped that the name of Burzynski will be appearing high up in search rankings alongside some more skeptical comment that the clinic might be used to or want. The blogger Josephine Jones is trying to keep the list of posts up to date: Stanislaw, Streisand and Spartacus.

Even Cancer Research UK felt they had to speak up: Hope or false hope?

Going private

In the UK, we have the benefit of a health service that’s essentially free at the point of use — it’s paid for out of our taxes, and you don’t need to have your credit card handy when you’re rushed to hospital.

In the US, there is private health insurance, frequently provided as a benefit by your employer. Not everyone is covered and there are various schemes that take care of at least some basic health needs. But many in the US are left to find the money to pay for treatments, with even a basic visit to a hospital costing $115 or so.

So even in a land where simple ailments may cost you an arm and a leg, what’s the cost of Burzynski’s cancer treatment? Without a doubt, such life-saving treatment can’t come cheap.

We have seen several heart-breaking examples of parents trying to raise upwards of £200,000 to fund a trip to Burzynski’s clinic in Texas in an effort to save their child. Some of this will be on travel and accommodation, but the clinic still must receive a hefty sum for the treatment.

Getting personal…

For something that might be life-saving, you expect it to be tailored just for you. And so it is. In the information sent out to enquirers, they say:

Treatment at the Burzynski Clinic is focused on individual patient’s needs. All patients have to come to Houston for consultation with Dr. Burzynski, where personalized, individual treatment plan will be formulated. Consultation takes about 2 days, the treatment requires to stay in Houston for about 2 to 3 weeks on an outpatient basis.

But at least they give you confidence that they can cope with whatever you’ve got:

Because it is a targeted therapy, it does not matter where the cancer has spread because it shuts the cancer down at the DNA level.

And their response rates are impressive: depending on the cancer and “based on medical records of the first 1770 evaluable patients”, they claim an ‘Objective Response’ rate — ie anything from an ‘improvement’ (defined as “Decrease in size of the tumors, not confirmed yet by the second follow-up radiological measurement”) to ‘complete disappearance of all signs of cancer’ — of anything from 30% for a brain tumour to 64% for non-Hodgkin’s lymphoma. These dramatic claims have never appeared in the peer-reviewed literature.

Click on image to embiggen.

…and costly

I’ll leave it to others to comment on these claimed rates, but what is the cost of this ‘personalised’ treatment?

We are designing personalized treatment plan for every patient because everybody is different. In order to get the most beneficial, most effective treatment, we need genomic testing through the entire genome of 24,000 genes. It is done not by us, but by Caris Life Sciences lab in Phoenix, Arizona. The laboratory will conduct, across the entire cancerous genome, microarray testing for gene expression followed by mutational analysis, FISH, and IHC for selected genes.  The testing will provide a selection of targeted agents, which are associated with clinical benefit as well as agents associated with lack of clinical benefit.  Based on these results, we can prepare a treatment plan.

They charge around 6,000.00 US dollars and the results are ready in 2 weeks.

That’s $6,000 before they even start the treatment.

There is more, of course. A lot more. They tell prospective customers:

Cost and fees structure:

1. Physician review of all medical records before your consultation appointment:

- $500 non-refundable payment to cover the cost of the physicians’ and clinic’s evaluation services.

2. Amount due at the time of consultation is as follows:

- $1,000.00 – which covers the initial consultation appointment

- $4,000.00 – required for lab work.

3. After Dr Burzynski reviews results and determines your course of treatment a $10,000.00 deposit will be due to start basic treatment.

4. Additional deposits for prescribed medications will be required due to the FDA just recently approving some of them. Their cost can be very high. That’s  why we do not know the exact cost for treatment until these medications have been prescribed. (Estimated deposit for these medications can range between $7,000.00 – $15,000.00).

5. When you are discharged to go home the monthly deposit for basic treatment will range from $4,500 – $6,000, in addition to medications. From our experience, the treatment regimen may last between 4 to 12 months on average for the majority of our patients.

To us in the UK, these costs are incredible, and (at the moment at least) inconceivable.

Note that this FDA approval mentioned seems to be only for existing prescribed medications, not for his treatments, which are — as far as I can ascertain — still not FDA approved, and never have been. In the brochure they send out, they something slightly different:

This would seem to imply that the $5,000 to $15,000 ‘Medication deposit’ is for Burzynski’s treatment, not for FDA-approved medications.

It’s worth highlighting the ‘Monthly Case Management Fee’. As it clearly states, this cost of $4,500 to $6,000 per month (this larger number isn’t mentioned in their brochure) does not include any medications. They are extras.

Before you are discharged from our clinic, you will meet with our monitoring staff who will contact you weekly to follow your progress. This will be part of your regular monthly case management recording medications, scans, laboratory tests, and progress as needed to continue your therapy regimen.

This could therefore cost someone between $18,000 for four months to as much as $72,000 at the upper end; more if it is deemed treatment longer than 12 months is required.

Anyway, it’s not entirely clear so we cannot know what the final costs would be, but it’s easy to see how all this might add up to £200,000 or more.

We can’t know how many people he’s treated, but his brochure states the outcomes of 1,770 cases. We cannot even guess what his operating costs are, what his overheads are, and what his production costs are, and therefore what his profits are, but it must be safe to assume they on a par with the size of everything else in Texas.