If you have any further suggestions for this article (for example, nominations of reputable cancer charities outside the UK or any new ideas), then please get in touch.
Skeptics for the Protection of Cancer Patients are fundraising for St Jude’s Chilren’s hospital in honour of Dr Burzynski’s 7oth birthday on January 23rd 2013. They aim to raise at least $30,000 by then (the cost of entering one of #Burzynski’s trials) and will then challenge Dr Burzynski to match the total sum.
- Happy Birthday, Dr Burzynski The Houston Cancer Quack, 04/01/13
Here are some other suggestions:
- Cancer Research UK
- Childhood cancer: searching for the genes behind the disease, Cancer Research UK
- Macmillan Cancer Support
- Marie Curie Cancer Care
Contact the 21st Floor
Keir Liddle asks
do you know of any support groups, charities and other organisations that exist to help support those who have been taken in by snake oil salesmen?
- Not Forgotten Keir Liddle, The Twenty-First Floor, 30/11/11
There are two petitions for you to sign:
- Petition the US FDA to investigate the Burzynski Research institute here
- Petition the clinic to release their trial data – details here
Contact the Texas Medical Board
The Alliance for Natural Health say here:
Please write to Gov. Rick Perry, who appointed a number of members of the TMB, including its heads, as well as the members of the House Committee on Public Health and the Senate Committee on Health and Human Services, which oversee the TMB. Tell them not to flush decades of important gene-targeted cancer research down the drain in the name of protecting the profits of an industry that doesn’t want Burzynski to survive
Perhaps we should write to them too.
(Please note that the ANH form is designed for US citizens only and that those using it must fill in contact details).
Contact the FDA
This page gives contact details for people who deal with complaints relating to FDA-related clinical trials. Complaints should be reported to the office handling the type of study involved. For example:
(Division of Scientific Investigations, Office of Compliance, CDER)
You could also write your own personal letter to the FDA, as set out here:
Ask the FDA to Inspect Burzynski Research Institute Majikthyse, 30/11/11
Contact the IRS
The Burzynski Research Institute is not a registered charity. The Burzynski Clinic ask for donations to be sent to Dr Stanislaw himself. Complain here. Claim a reward here – and then donate it to one of the charities listed above.
Should you invest in Burzynski stock? anarchic_teapot, Short and Spiky, 29/11/11
Contact the MHRA
Antineoplastons do not have a license (marketing authorisation), nor is there any reliable evidence of efficacy. But they are still medicinal products.
9.—(1) Subject to regulation 11, no person shall issue an advertisement relating to any relevant medicinal product which contains any material which—
(b)suggests that the effects of taking the medicinal product are guaranteed, are unaccompanied by side effects or are better than, or equivalent to, those of another identifiable treatment or medicinal product,
(c)suggests that health can be enhanced by taking the medicinal product,
(e)is directed exclusively or principally at children,
(h)suggests that the safety or efficacy of the medicinal product is due to the fact that it is natural,
(l)mentions that the medicinal product has been granted a product licence.
Here are some relevant pages from the MHRA website:
Contact Trading Standards
The Cancer Act UK (1939) states that
Prohibition of certain advertisements.
(1)No person shall take any part in the publication of any advertisement—(a)containing an offer to treat any person for cancer, or to prescribe any remedy therefor, or to give any advice in connection with the treatment thereof;
Contact the ASA
The UK Advertising Standards Authority take action against misleading, harmful or offensive advertisements. Complain to them here.
Please note that the The ASA’s remit does include charities (this is not a reference to patients’ fundraising campaigns, but to charities promoting the Burzynski clinic).
Write to newspapers
Uncritical articles promoting fundraising campaigns for Dr Burzynski’s Clinic are more common than you might think. Most of them appear in local newspapers (there are a few examples here). Examples of letters of complaint are available here.
I am happy for you to use my own letter as a template if you wish.
As discussed here, the MHRA advise journalists and patients organisations that:
There are a number of legal safeguards on advertising medicines intended to protect public health. These apply to materials which fall within the definition of an ‘advertisement’, which broadly speaking is anything “designed to promote the prescription, supply, sale or consumption” of a medicine.
The safeguards include a ban on advertising medicines which have not been granted a marketing authorisation and on advertising prescription only medicines to the public. They also state that advertisements must present medicines objectively, without exaggerating their properties and that advertisements must not be misleading.
The key point is that these controls (and the penalties for breaches) apply to any person who promotes a medicine – not just the manufacturer. This can potentially include newspaper or magazine articles or information disseminated by a patient organisation.
If the MHRA consider a promotional news article to be ‘advertising’, does this suggest such an article would also be within the remit of the Cancer Act? I don’t know, but it’s certainly worth bearing in mind.
Please note that uncritical newspaper articles do not generally come within the remit of the UK Advertising Standards Authority, who will refer you to the Press Complaints Commission.
Contact the charities
(EDIT 02/12/11 This section has been edited to clarify that it does not refer to the patients’ fundraising campaigns. I believe they are well aware of the controversy and to keep reminding them of it would be insensitive.)
A Google search reveals that there are several UK charities promoting the Burzynski clinic.
You could write to the charities in question expressing your concern. If you are not happy with their response you could…
Contact the Charity Commission
I’m unsure whether the remit of the Cancer Act extends to charity websites that are promoting treatments.
However, any of the following issues should be reported to the Charity Commission, as they explain here:
- significant financial loss to the charity;
- serious harm to beneficiaries and, in particular, vulnerable beneficiaries;
- criminality within or involving a charity;
- sham charities set up for an illegal or improper purpose;
- charities deliberately being used for significant private advantage;
- where a charity’s independence is seriously called into question;
The Charity Commission can be contacted here.
Write to your MP
Support the campaign for Libel Reform
It is quite possible ‘UK bloggers’ were singled out by the Burzynski press release because of the crippling libel laws in this country.
Spread the word!
Write a version of this post on your own blog then publicise it as best you can.