April 2007

The Nation Reviewed

Kuru awareness week

By Richard Cooke
Illustration by Jeff Fisher.

The US Vice President, Dick Cheney, took an unwelcome guest home with him from his recent Australian trip. Never a healthy man (he has had four heart attacks and a quadruple bypass), the VP complained of calf pain on his return and, sure enough, an ultrasound revealed a deep-vein thrombosis (DVT). Some newspapers questioned the wisdom of the 40,000-kilometre trip, and suggested that the ailment could provide a fig leaf for Cheney's resignation. A few reports finished up by noting an irony: he had succumbed to a DVT in DVT Awareness Month.

Depending on where you live, it was also National Orthoptics Week, Multiple Birth Awareness Week, Red Cross Calling Month, National Problem Gambling Awareness Week and Patient Safety Awareness Week. It was International Ideas Month, International Listening Awareness Month, and International Mirth Month everywhere, as well as the International Year of the Dolphin, thanks to the always self-parodying UN.

The US has 34 separate bodies laying claim to the month of March. In New South Wales, there are now more than 140 awareness events each year - a modern, secular adjunct to the Gregorian calendar, where ailments have replaced saints' days (except when the saint is St Vitus). 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 are also published on a section of the department's website. In June 2006, this site publicised International Kuru Awareness Week, organised by the International Kuru Foundation. I know this because I am the International Kuru Foundation.

Kuru is a very rare, very unpleasant and invariably fatal disease, closely related to mad-cow disease. Those infected spend months in agony before madness, paralysis and eventually death set in. It has a cruel symptom which gives it one of its informal names: laughing sickness. The only good thing about kuru is the ease with which it can be prevented. Unless you are one of the 8000 or so South Fore people of the Papua New Guinean highlands, your chances of contracting it are nil. Even if you are one of the Fore, you can avoid kuru through a simple dietary restriction: don't eat your dead relatives.

The only known cause of kuru is ritualistic mortuary cannibalism. The Fore have, understandably, ceased practising cannibalism, and there are now only a handful of kuru cases. While it will soon be extinct, kuru is still of interest to researchers, because it can be used in studying prion diseases, like Creutzfeldt-Jakob disease. Kuru can also be used to see whether an abstruse, unworthy and patently bogus awareness campaign can still be officially recognised by NSW Health. It is the definitive answer to the question, Is there anything so obscure that it can't have an awareness week?

Working on the principle that anything which exists is on Google and that anything which is on Google exists, I established a website, www.kurufoundation.com, half-filled it with material cribbed from Wikipedia, and created a fake email address for its "founder", to whom I gave the reassuring name of Dr Robert Graham. The web designer who helped me then added a hopefully worded banner over the edifice: Trying to Save Lives.

Using Dr Graham's email address, I submitted a request to NSW Health, asking that International Kuru Awareness Week be added to the 2006 Health Calendar and the department's website. 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 all is correct at:


Regards ...

Had anyone at NSW Health called Dr Graham's US phone number, listed both on the foundation's website and in my email, 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 undertaken there is strictly non-medical.

When I laid Dr Graham to rest and began probing NSW Health about how awareness campaigns were vetted, the response was a distinct  recalcitrance. Questions about the budget allocated to these campaigns, the checking process and the proportion of applications which were knocked back were ignored or batted away. The firmest answer was a piece of bureaucratic boilerplate from the original application form, patronisingly highlighted for convenience: "we consider whether it ... sends proactive health messages and raises awareness of particular health issues". It was clear that awareness campaigns had to be awareness campaigns. The process to get an event listed - on the website, at least - was straightforward: you simply applied. "There is no checking process," an employee told me.

The impression given by NSW Health was not that the department had something to hide, but rather that it was uninterested, maybe even a little embarrassed. And while no one voiced it, the obvious retort to my enquiry was, So what? So what if a few charities and patient-advocacy groups want their day in the sun? What would be gained from running a nefarious campaign, anyway? Scrutinising each applicant would only be a waste of time and resources.

For the most part this view is correct. Most awareness campaigns have nothing to hide. World AIDS Day, Bandana Day, Daffodil Day and the like are simply fundraising techniques for reputable charities. Many more obscure events, such as National Orthoptics Week, are actually conferences that call themselves awareness weeks because everyone else does, and they make no attempt to solicit funds. It has become a naming convention for conventions.

There's little incentive for abuse in these campaigns. But it is present in another sort of awareness campaign, in which drug companies fund patient-advocacy groups to act as proxy lobbyists. Meningitis Awareness Week is one example of this type of arrangement. A drug company, in this case Wyeth Australasia, gives substantial funding to a group or institution, in this case the Meningitis Centre, which runs a campaign focusing on treatment and prevention - that is, medication. Often the grand prize for both parties is the inclusion of a medication on the Pharmaceutical Benefits Scheme. In the case of meningitis, the result was a vaccination program for a strain of the disease that kills about ten Australians a year. A press release of 2004 gives an idea of the campaign's strident tone: "WILL GOVERNMENT SENTENCE 10 MORE CHILDREN TO DEATH THIS YEAR?"

The merits of vaccination against a rare disease might be debatable, but at least the Meningitis Centre has a sincere and credible position, and Meningitis Awareness Week has a serious aim. The same can't be said of Headache Awareness Week (24-30 September this year), a soft-marketing confection concocted by Pfizer in association with the Brain Foundation and Headache Australia (the people who brought us the self-defeatingly named Brain Awareness Week). Pfizer had previously commissioned a report into headaches for the Brain Foundation, with astonishing results: "severe headaches", a catch-all category that included tension headaches, were afflicting 9 million Australians a year, an "epidemic".

The report quoted Gerald Edmunds, the national executive director of the Brain Foundation. "Severe headaches can be a precursor to more serious health problems, such as stroke and neurological conditions," he said. "This is a cause for concern as headache is a complex condition." The message was clear: "the role of a doctor is vital," an insight that made it as far as Channel Nine's A Current Affair and Alan Jones's radio show. 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. The primary aims of Headache Awareness Week are "having headaches taken seriously" and increasing Headache Australia's membership.

If you take the view that free promotion is a form of subsidy, then governments are subsidising drug companies' campaigns to lobby governments for subsidies. Other industries also get a free ride, like Dairy Australia, who supported a Healthy Bones Week campaign which claimed that osteoporosis killed more Australian women than cancer. The false claim was due to a "human error" by the sponsor. It's hard to imagine an error underselling the figure.

Perhaps, though, instead of weeding out conflicts of interest and pruning the campaign list back to deserving charities, health departments are relying on a fact that everyone is aware of: no one pays the slightest attention to awareness campaigns. There's something oxymoronic about having 140 or more of them each year. In the public sphere, awareness really means attention, and attention wanes, especially when there are so many competing calls for vigilance.

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, written by someone called Josh Manheimer; he even emailed through the script. Should you be in Long Beach, New Jersey, on 8 August, you can hear it read. There is a ticket reserved for Dr Robert Graham, and he is unable to attend.

Richard Cooke

Richard Cooke is The Monthlys contributing editor. 


Cover: April 2007
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