Last week, the Observer published an article about a family being torn apart by cancer and the devastating effects it has had on not just one, but two members of their family.

Terri Bainbridge was suffering from breast cancer. Whilst receiving chemotherapy treatment, her daughter Billie began to show signs of an unknown neurological illness. She was later diagnosed with a tumour of the brain stem, a type of cancer called Diffuse Intrinsic Pontine Glioma. The prognosis for this type of cancer isn't very good at all. Children diagnosed with this type of tumour have a life expectancy of 12-18 months from diagnosis.

Understandably, the family were distraught and wanted to do anything they possibly could to help their four-year-old daughter get better. They did some research on the internet and came across a clinic in Houston, Texas called the Burzynski Clinic, a cancer clinic headed by a man called Dr Stanislaw Burzynski that claims to provide "Innovative and cutting-edge Personalised Gene Targeted Cancer Therapy" as well as "customized treatment for over 50 types of malignancies" [see footnote]. On reading this, in the knowledge that your daughter had no hope of living, why wouldn't you go here?

The Observer article was not the first time that the Burzynski Clinic has been in the news recently, however. Other cases that attracted similar media attention include the Hope for Laura campaign as well as a similar initiative to send a teenager from Dublin to the clinic. The reason they need to raise so much money is that Burzynski's treatment does not come cheap. Alan Henness of the Nightingale Collaboration has taken a closer look at the cost of Burzynski's treatment in this blogpost.

First come the lab tests on your genes: $6000 before you even start the treatment, according to patient information documents sent by the clinic. Before the initial consultation, there is another payment of $500, so that a doctor can read through your medical notes. When it comes to the consultation, $1000 needs to be paid to cover the consultation itself as well as another $4000 to cover the cost of lab tests. Next comes the deposit, after Burzynski has reviewed your results, of $10,000 to start what they term "basic treatment". Then comes the deposit for the medication, which according to the clinic can range from $7000 to $15000. The costs don't even end here. You then have to pay $4500 to $6000 a month, not including medication costs, for "basic treatment". They state that a treatment regime lasts on average 4-12 months.

These are significant costs, but if you thought they were going to save the life of your four year old, you'd do all you could to raise the money, right? That's exactly what Billie's family and friends did. Numerous celebrities joined in to help raise the cash to send Billie to this clinic.

But there is a little known, unmentioned caveat with Burzynski's antineoplaston therapy – the treatment he developed in the late 1960s. Burzynski noticed that cancer patients had significant differences with peptides (amino acid chains) in their blood compared with healthy people. He also noticed that they were present in urine of healthy people. He decided to extract these chemicals from the urine and give them to patients in the hope that they would be treated of their cancer. He started to run a number of clinical trials.

However, no independent studies have confirmed what few results Burzynski has published. His treatment has been called "scientific nonsense" by Dr Howard Ozer, director of the Allegheny Cancer Center in Philadelphia. As antineoplaston therapy is still in clinical trials and not licensed as a treatment of any disease, Burzynski isn't allowed to sell them. He is, however, allowed to continually run more and more trials. In this setting, he can charge for the privilege of joining these trials. It's not looking promising for this treatment.

A number of people, including Cancer Research UK, have raised concerns about Burzynski and the endless campaigns to raise hundreds of thousands of pounds to send seriously ill cancer patients half way across the world to be treated with drugs that haven't been proved to work. I wrote a scathing post about his treatment in August.

However, two months later, I received a threatening email from a Marc Stephens, claiming to represent Burzynski, the Burzynski Clinic and the Burzynski Research Institute. He was threatening me with a libel lawsuit if I didn't immediately remove any and all references to his clients from my blog and Twitter. Other bloggers, sceptical of Burzynski and his antineoplaston therapy received similar threats from Stephens. Andy Lewis of quackometer.net has written about his dealings with Stephens here.

It seems that instead of dealing with criticisms about his treatments, Stanislaw Burzynski is only interested in silencing those with opinions contrary to his by using libel laws. Again, this is another case demonstrating the need for libel reform. Scientific disputes should not be determined in courts, but in journals.

I leave you with a quote that sums up exactly how I feel about using libel laws in this way:

"[Plaintiffs] cannot, by simply filing suit and crying 'character assassination!', silence those who hold divergent views, no matter how adverse those views may be to plaintiffs' interests. Scientific controversies must be settled by the methods of science rather than by the methods of litigation. … More papers, more discussion, better data, and more satisfactory models – not larger awards of damages – mark the path towards superior understanding of the world around us." – US Chief Justice Frank Easterbrook, Underwager v Salter 22 Fed. 3d 730 (1994)

• This article was amended on 3 December 2011. The author

states that one family "did some research on the internet and and came

across a clinic in Houston". The family has asked us to make clear

that members of the family completed a long and thorough period of

research across a wide range of conventional and alternative

treatments, both in the UK and abroad, before approaching the clinic.

They say thay are fully aware of the controversy surrounding these and

many other experimental treatments.