Seeking experimental treatments: There is a difference between conventional trials and unconventional clinics

An unusually balanced piece about cancer treatment options that makes a whole lot of sense even if it paints Burzynski’s treatment a bit too rosy. It’s more about seeking out those genuine trials that may be appropriate, why people will go far and why they are willing to try.

Faced with a terminal diagnosis, North Vancouver cancer patient goes to extreme lengths to find treatment.

Medical tourism is a growing phenomenon. With easily accessible information on the Internet, many who can afford to nip across the border for hip revisions or joint replacements do so rather than join a waiting list.

Others, like [Chelsea] Steyns, seek more experimental or unproven procedures.

[...]

They weren’t ready to accept that Chelsea would die; within a matter of days, they had heard through friends of the Burzynski clinic; a quick search online brought them to his website. Steyns’ sister Emma filled out an online application, sent in a package of Steyns’ medical information, and two weeks later the sisters were on a flight to Texas.

They didn’t balk at controversy surrounding the doctor, or the cost: $35,000 up front and up to $30,000 a month for the targeted gene therapy treatment.

[Sarah Sample, patient and family counsellor at the BC Cancer Agency] “I don’t dissuade anyone from taking extreme measures but I would want to ask them questions about the costs and benefits of something. It’s not just the cost of money, it’s the quality of life, the impact on their family, the time and energy and their caregivers’ ability to hold on.”

The article goes on to mention how terminal patients may be vulnerable to the promise of unconventional cure and subject themselves to difficult and painful procedures in the process.

Dr. Chris Daugherty, an oncologist and international authority on medical ethics and end-of-life decision making at the MacLean Centre in Chicago, draws a line between patients pursuing treatments based on “real trials” and Burzynski, who he says is “off the bell-shaped curve 95 per cent of us practice on.”

Daugherty said it would be unfair to compare Burzynski, whose treatments have not been shown in any randomized study to be effective, with doctors conducting clinical trials at more traditional medical centres, but in those cases Daugherty said, “Seeing patients make very difficult decisions we have to make sure we are not taking advantage of them for our own personal gain, fame or fortune. There are conflicts of interest any time research takes place.”

A VERY good point. To read more about the different with Burzynski, do not miss this piece detailing ALL the problems and issues with the ANP treatment. This type of information needs to be made clear to those considering the trip to Texas and the huge expense for a drug “trial” that is not traditional.

UPDATE: (11-Nov-2012) Burzynski critics have gone viral again. The disinfo post has made it to Boing Boing.