This is probably a foolish thing to
blog about as it is serious and emotive but this ongoing story of
the mother who “abducted” her son rather than allow him
radiotherapy has caught my attention due to it involving a) twins b)
brain cancer:
http://www.telegraph.co.uk/health/healthnews/9738778/Sally-Roberts-runaway-mother-in-despair-as-boys-cancer-returns.html
Now I am not going to pretend to
imagine what it must be like to have one of your children diagnosed
with an aggressive stage 4 cancer. It must tear a family apart. And
the choices that a parent in this situation faces on behalf of their
child hardly seem like choices at all. Rocks and a hard places spring
to mind. But this story, along with another from my local area, have
made me want to both weep and scream. It is not my place to comment
on this poor family’s plight or to judge their actions – I truly think the parents are doing what they believe to be best. But in
articles I have read there have been mention of the use of
alternative therapies such as homeopathy and special diets instead of
conventional radiotherapy. To me this epitomises why pseudoscience
can be a dark and dangerous thing.
While flicking through my local paper a
few months ago I came across an article about a fund raising campaign
for a 4 year old girl with brain cancer [1]. Her family has so
far raised an incredible £200,000 for her alternative cancer
treatment at the Burzynski Clinic in Houston, Texas. I now need to
add some context: my gorgeous, vivacious Mum was diagnosed last year,
at the age of 55, with grade 4 glioblastoma multiforme (in layman's
terms a f*cker of a brain cancer with a median life expectancy of
12-18 months and a 5 year survival rate of less than 10% [2]).
So have I spent the last year jumping out of planes, scaling
mountains and shaking a tin to raise money for her treatment in
America? Or did she forgo “brain frying” radiotherapy in favour
of crystal healing, a naturopath's diet and a foot massage? No, for
the simple reason that the NHS has (so far) thrown all the resources
they can at her and she has been doing better than can be expected
considering her prognosis.
So it made me question why, with a
local hospitable which has been publicly praised for its care of
cancer patients and the pioneering, world leading Great Ormond Sreet
Hospital just down the road, was this little girl sent to be part of
a drug trial in Texas? I googled the Burzynski Clinic and soon my
hackles were well and truly raised. It became apparent that I have
been very slow to jump on this particular band wagon: the Burzynski
Clinic is extremely controversial. I will try not to go into too much
detail as there is a wealth of information (see links below) for you
to peruse at your leisure. Many of our best contemporary science
writers and bloggers (Simon Singh for example) have written about Dr
Burzynski's methods and they have convinced me that at best this
doctor is desperately trying to help but is sadly misguided.
Dr Burzynszki discovered the peptides
he named “antineoplastons” in 1967 [3]. The Burzynski
Patient Group refers to their use as “non toxic” and a “break
through” treatment[4]...so why hasn't it broken through
yet? If it is “non toxic” why are some of the reported side
effects (such as seriously elevated sodium) so dangerous? Why are the
interactions of antineoplastins with other traditional
chemotherapeutic agents (some of which Dr Burzynski also administers
to his patients) unknown? If these antineoplastons are so brilliant
why has the medical profession not been using them for 43 years? Why
has he published so little in peer reviewed journals? Why do both the
American Cancer society and Cancer Research UK advise against this
treatment[5]? Why have other scientists struggled to
replicate his results? Why has he not conducted randomised,
controlled clinical trials (considered the gold standard in clinical
research)? Why hasn't he got a bloody Nobel Prize?! Could it be
because, just maybe, antineoplastons aren’t actually very
effective? Houston, you may have a problem.
Oh but I can hear it now....like
thunder in the distance are the cries of the conspiracy theorists “it
is the sole, brave maverick against the evil Big Pharma and the FDA”.
Yes, the marverick who tries to use libel laws to prevent the freedom
of speech of bloggers. And yes, there is a lot wrong with
conventional medicine (I could probably discuss it with you when I
put down my chick lit and finally get round to finishing Ben
Goldacre's Bad Pharma). And yes, sometimes doctors do not explain
risk and benefits clearly in layman's terms to terrified families.
And yes, informed consent is a nice idea in principle but in reality
can be difficult to achieve. And yes, cancer treatments (although
better than they were) are still bloody scary with seriously shitty
side effects.
Now I don't have a problem with
patients using complementary methods in addition to their
conventional ones. Some reflexology or reiki may be an enjoyable way
to relax and feel better. But if they are used instead of, or
interact negatively with, conventional treatment surely they must be
considered dangerous. As hard as it is when a loved one may not
celebrate another birthday it is important to remember that a patient
testimonial is not the same as hard clinic data, however heartfelt it
may be. Unproven remedies are just that, unproven: that means they
may not work and could cause harm (either directly or because other
treatments, with known efficacy and levels of risk, are ditched).
Sometimes life deals a curve ball and the choices we are forced to
make are not black and white between hope or non hope but the grey
area between quality of life and longevity.
Science and technology defines us as a
species. It is the questions “how”, “why”, “what if...?”
that allow us to increase our knowledge and understanding of the
universe and in turn manipulate our own environment and destinies.
When done well it epitomises the best of humanity: observant,
empirical, creative and solution-focussed. It is the sharing of
resources and data, openness to new ideas, international
collaboration and well designed and well conducted research that allow us
to make evidence based decisions for the benefit of both individuals
and society. The alternative medicine industry appears to be directly
at odds with this, giving false hope to people at their most
vulnerable.
References:
Further reading:
