First do no harm……

It so happens that I grew up knowing that I would have had a cousin who, if she had lived, would have been much older than me.

I was told she was a very beautiful child who looked normal in every way but could do very little for herself. She had some kind of incurable brain disorder but I don’t know what it was.

I was told that my aunt travelled the world far and wide with her ill daughter looking for a cure.

I have no idea whether any doctor said they could help or whether they told her nothing could be done.

I have no idea how much money she spent looking for a cure or whether she encountered any medical quacks on the way. If she did I have no idea whether she paid them money for their quackery.

I often think about the sickness burdens that people have to bear, and how normal it would be to want, in desperation, to travel to the ends of the earth looking for a cure for your child. It often strikes me also, how vulnerable such people are when they are offered false hopes in exchange for financial gain.

Last weekend there was quite a little flurry of potential legal activity on the medical blogosphere. Copyright law, harassment law and heaven knows what other kinds of law were entering the scene.

By far the most moving of these fracases involved a child from the UK with a rare brain tumour who is attending a clinic in the USA known as “The Burzynski Clinic”

It has a website:

http://www.burzynskiclinic.com/

It looks as if it is a major, important, well-funded centre of excellence.

The child is a little girl whose name is Billie, and people are rallying round to raise money to help her travel to and from Texas to obtain treatment that they feel may help her. It is treatment that is not available in this country. The Billy Butterfly Fund has been set up.

The Observer newspaper on 20 November carried an article about her.

To be honest, The Witch Doctor was completely unaware of this establishment, or the treatment it offers. The name of the treatment sounds convincingly scientific. It is known as Personalised Gene Targeted Cancer Therapy, using certain peptides known as Antineoplastons.

If Antineoplastons are so important in the treatment of cancer, why has The Witch Doctor never come across them before?

When she first heard the term she knew what the word implied, but she hadn’t a clue what the damned things were!

Is she an ignorant, poorly trained, out of touch witch who does not read the journals and doesn’t keep up to date?

Possibly.

After all, she missed that they are mentioned on the National Cancer Institute’s website:

Why are they not being used in the UK? Has NICE stepped in and decided the treatment is too expensive?

NICE may have its faults, but depriving a child of effective treatment for a rare brain tumour is not one of them.

Has Dr S R Burzynski made a cancer breakthrough?

If so, we should all know about it, because that is the nature of research and The Scientific Method.

Or….

Is there something rotten the State of  Texas?

It seems some bloggers who are more educated than The Witch Doctor on these matters are well aware of Dr Burzynski’s antineoplaston therapy and have been keeping an eye on it for some time.

They are expressing views that are not favoured by those working in the Burzynski Clinic.

Bloggers have been very seriously threatened and, as a consequence, antineoplaston therapy has gone viral!

It is good that controversial views are being aired publically over this clinic because it is definitely in the public interest since it involves patients worldwide including some from the UK. If, as it is alleged, that a lot of money is passing from the hands of vulnerable cancer patients and their relatives, or charities set up to help them, to those making bogus claims over a useless cancer drug, information is now available on the WWW that can be followed up and any Wibblers of Woo that are around can be exposed.

Alternatively, if the clinic concerned has indeed found a treatment that can significantly help cancer patients, even if it is not a cure, and the oncologists worldwide are ignorant of it, then that is good news too. After all, ethical doctors can have no secrets when it comes to sharing cancer research that might benefit patients worldwide.

Either way, opening the conversation up in the blogosphere is in the public interest.

No doubt it will eventually become apparent whether this is a scam, a fanatical belief in the power of a useless medication, or a genuine cancer drug that offers hope to at least some cancer patients.

However, questions need to be asked about why a spokesman for the Burzynski Clinic is threatening a group of bloggers who, in the public interest, want to learn more about the Scientific Method being used to asses the treatment being offered by this clinic.

Here are links highlighting among other things, the bloggers who have been targeted by Marc Stephen, head of marketing for the Burzynski Patient Support Group.

BURZYNSKI FANATIC THREATENS BLOGGERS

THE BURZYNSKI CLINIC THREATENS 17 YEAR OLD BLOGGER

THREATS FROM THE BURZYNSKI CLINIC

THE BURZYNSKI CLINIC THREATENS MY FAMILY

SCIENCE BLOGS

D C SCIENCE

RADIOHEAD SIGNED GUITAR BILLIE APPEAL

It all makes interesting reading.

It needs to stay viral until the research surrounding this therapy has been revealed and published in the medical journals and has been thoroughly peer reviewed.

The Witch Doctor – Link to a random page

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LINK TO UK MISSING KIDS WEBSITE

LINK TO MISSING PERSONS WEBSITE

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