Comment by Greg Rose and Sonia Mayers
When we first met the executive director of the National SIDS Council, Rob Lamb, in 1990, he was sorting some prototype red noses and checking the latest cartoon car logo. Being a little silly, he said, means we raise more money and so we can save more children from sudden infant death syndrome — cot death.
But there are some people who have been claiming that the red plastic clown nose is nothing but a sick joke. One body dissatisfied with Red Nose Day is the Health Care Reform Group.
Since 1988 Australia has been littered with plastic red noses. They hang from city buildings, cars, billboards, government vehicles and even the faces of prime ministers' wives. This extremely successful public relations stunt (which isn't even original; it was stolen from Britain's Comic Relief) has raised $27 million (excluding this year's tally). The campaign is great image-making stuff for both the corporate sector and the government, which donate hefty sums and in return get to display gargantuan red bubbles to show they care.
Where does the money go? $21 million of the total $27 million raised has been spent on houses, cars, furniture and equipment, investments, administration and salaries and fundraising costs ($5 million).
An article by Ben Hill in the Sydney Morning Herald in August pointed out that thousands of dollars have just disappeared. Other money is keeping people employed in jobs previously done on a volunteer basis. Much money is simply sitting in bank accounts in case the fundraising stops. Only $6 million has been spent on medical research, counselling and education — 22 cents in every dollar donated.
Originally, SIDS organisations were non-professional groups. Parents worked to help other parents who'd lost children. In the late '80s a new umbrella group, the National SIDS Council, sought professional fundraisers. It was a coup of sorts. Power was taken from the parental grassroots groups, and the new corporate-style administration began the first Red Nose Day. By the early '90s, SIDS was wallowing in money.
For many, even the idea of red noses is offensive. The former president of the Sudden Infant Death Association of NSW, Bob Head, boycotted Red Nose Day in 1988. While red noses were sold in NSW via other states, he rejected any financial benefits from
the campaign. He was very suspicious that the money would be mischannelled, that it wouldn't go to the most valid research.
What is being funded? Adrian Walker of Melbourne's Monash University is studying respiratory muscles in sheep. Caroline McMillan and Giusseppe Simonetta of the same university are also studying sheep, but in the foetal stage.
When asked why he applied for a Red Nose grant, Simonetta replied "because I wanted to do something to do with humans." He has no medical background. Simonetta began studying SIDS by placing stressors on foetal sheep. He wants to see if stressors on sheep influence neural and hormonal development. He admits sheep are not physiologically, biochemically, histologically or hormonally like humans but says he is only using them as a model.
Professor Colin Sullivan at the University of Sydney is being funded to study dogs' breathing patterns during sleep. Dogs don't die of SIDS. In fact, their genetic make-up has no correlation to humans' whatsoever.
The laboratory animal has a different physiology, tissue make-up, biochemistry and immunology to the babies that it is purported to represent. Also, since the animal does not spontaneously encounter SIDS, researchers must artificially create SIDS situations.
Clinical research (the study of sick and healthy babies) and epidemiology are the only ways to witness the baby in its own environment and therefore all the potential factors, including environmental causes, which could trigger cot death. The majority of Red Nose research has a hunch as its basis and stabs in the dark by experimenting with this hunch on the wrong species.
One study funded by Red Nose Day is following a scientific method. The Menzies Centre in Tasmania is conducting a longitudinal study of babies in that state, reporting details of the subsequent SIDS deaths from the study group. But even this study is fraught with inconsistencies, in particular around the claim that the research showed more babies died of SIDS lying on their stomachs.
The Menzies Centre claims a 50% drop in SIDS deaths since their announcement. This fails to take account of a huge campaign warning that smoking may be linked to SIDS and that breastfeeding helps to prevent SIDS.
The study also failed to point out that 21 of 28 babies were ill prior to death, usually with a minor cold. Doctors Glen Dettman and Archie Kalokerinos consider even the most minor cold to be potentially fatal to a weak child.
These two doctors have been studying SIDS for 20 years and have, on several occasions, requested assistance and recognition from the SIDS organisations. In their studies they have found SIDS to be linked to any form of noxious substance that may enter the child's environment. These include pesticides, cough mixtures containing antihistamines and sedatives and even early childhood vaccinations — which has caused more than a ripple in the medical field and a hostile reaction from the National SIDS Council.
"They don't even want to prove us wrong. They'll all be out of a job", remarks Dr Dettman.
Nothing concrete has come out of $27 million raised and a quarter of a century of officials SIDS research. The Red Nose Appeal has raised more questions than it has been able to answer.
Rob Lamb can't see an end in sight. "We want people to know that money just isn't being frittered away. The SIDS problem isn't going to be over in five years or 10 years ... We want people to support us not just now but tomorrow, and well into the next century."
[The authors are members of the Health Care Reform Group, PO Box 421, Glebe NSW 2037.]