Healthy Skepticism Library item: 10089

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.

Publication type: news

Cooke R.
Kuru Awareness Week
ABC Radio National (Australia) 2007 May 10
http://www.abc.net.au/rn/perspective/stories/2007/1916383.htm#transcript

Notes:

Transcript of broadcast on Radio National’s “Perspective” programme.

Full text:

Today is World Lupus Awareness Day. It’s also Motor Neurone Disease Awareness Week, National Mothering Week, Addison’s Disease Awareness Week, Neurofibromatosis Awareness Month, Playgroup Awareness Month in the UN International Year of the Dolphin.

In NSW alone, there are now more than 140 awareness events each year. They range from the obtuse (Sleep Awareness Week) to the obscure (Diethylstilboestrol Awareness Week), and are charted on a document called the Health Calendar, printed and distributed by the NSW Department of Health. They’re also published on the department’s website. One of the events advertised in June last year, was called International Kuru Awareness Week, organised by a body called the International Kuru Foundation. I know this because I am the International Kuru Foundation.

Kuru, also called “laughing sickness”, is very rare, very unpleasant and invariably fatal disease related to mad-cow disease. The only good thing about kuru is that it’s easy to prevent. All you have to do is not eat anyone. The only known cause of kuru is cannibalism, and the only people who get it are Fore people of the Papua New Guinean highlands. It’s almost extinct, though there are a few researchers still interested in it. If Kuru can get an awareness week in Australia, then anything can.

To test this theory, I made a website for the foundation, created a fake email address for its “founder” – I called him Dr Robert Graham, a reassuring name – and gave the foundation a motto “Trying to Save Lives”. Then I sent off an email, from Dr Graham’s address, asking that International Kuru Awareness Week be added to the 2006 Health Calendar and the department’s website in June. The response was almost immediate:

Hi Robert

As requested your event has been added to the NSW Department of Health Conferences and Events list.
Please check everything is correct…

Regards … etc etc

So it was up to me to check. Had anyone at NSW Health checked, say by calling Dr Graham’s US phone number, they would have reached a Santa Cruz gentlemen’s club called the Bird Cage. I have never been to the Bird Cage (I doubt whether any gentlemen have been, either), but any anatomical research done there is strictly non-medical.

The application then was the whole process. “There is no checking process,” an employee told me.

The obvious retort, though NSW Health didn’t make it, is so what? So what if a few charities and patient-advocacy groups want their day in the sun? Scrutinising each applicant would only be a waste of time and resources.

And that’s true, for the most part. Many awareness weeks are fundraising for reputable charities, and many more obscure events are just conferences that call themselves awareness weeks because everyone else does. It’s a naming convention for conventions.

But there is another common type of awareness campaign, where drug companies fund patient-advocacy groups to act as proxy lobbyists. Take Headache Awareness Week (24-30 September this year). It’s run by the Brain Foundation and Headache Australia (the people who brought us the self-defeatingly named Brain Awareness Week). It’s funding comes from the drug company Pfizer, who had previously commissioned a report into headaches, conducted by the Brain Foundation. The results were astonishing: “severe headaches” were afflicting 9 million Australians a year, a number described as an “epidemic”.

The report’s conclusion was that “the role of a doctor is vital”, and the aim of Headache Awareness Week is “having headaches taken seriously”. In other words, the market for headache treatments can be expanded by changing consumer behaviour, and the easiest way to do this is to create patient anxiety about headaches.

Awareness campaigns funded by drug companies often aim to have treatments listed on the Pharmaceutical Benefits Scheme. If free promotion is a form of subsidy, then governments are subsidising drug companies’ campaigns to lobby the governments for subsidies. Other industries get a free ride too, like Dairy Australia, who supported a Healthy Bones Week campaign, which claimed that osteoporosis killed more Australian women than cancer. This laughable claim was due to a “human error” by the sponsor. It’s hard to imagine the same error underselling the figure.

NSW Health could start looking into these events, sticking with the deserving charities, and clearing away the obvious confections But I think they might be relying on a fact that everyone is aware of: that no one pays the slightest attention to awareness campaigns. How could they when there are 140 of them a year?

Unfortunately, no drug companies opened their pork barrels for the International Kuru Foundation. But it did receive one donation. It was an offer to attend a play, a two-act comedy entitled Kuru. If you were in Long Beach, New Jersey, on 8 August last year, you could have heard it read. There was a ticket reserved for Dr Robert Graham of the International Kuru Foundation, and he was unable to attend.

Guests
Richard Cooke
Writer for The Chaser
Freelance journalist

This is an edited version of piece that was originaly in The Monthly

Further Information
International Kuru Foundation

Producer
Sue Clark