Photo-ops, scientific racism and the spread of zika

One of the three pin-head baby photos in today's New York Times

Sneak preview of one the songs that musicians and lyricists are busy working on for the Song of Contagion show, which will run June 13-17, 2017 at the fabulous Wilton’s Music Hall: the Dengue Merengue. We’re using the contrast between dengue and zika to demonstrate how important media coverage can be in determining how much attention and funding a disease gets.

The New York Times this week ran a long story titled How the Response to Zika Failed Millions. Though scientists get a mixed-to-bad scorecard, the press was highly praised.

“In Brazil, the press was the first to sense that something was going on,” said Dr. Karin Nielsen, a pediatrician at the David Geffen Medical School at the University of California, Los Angeles, who also works in Rio. “It was pushing it even before the medical specialists were.”

Certainly the press is excited about Zika. In the last year,the New York Times alone has written 1,062 stories mentioning Zika. So here’s my question: why does the press not get excited about dengue? The NYT ran just 173 stories mentioning dengue in the last year, and if you sort them by highest relevance, 14 out of the top 20 have headlines that are about Zika, not dengue. And yet both pathogens are spread by the the same mosquito in largely the same areas. Dengue has been around for ever and is getting worse, debilitating around 96 million people every year and sending about half million of them to hospital. Around 13,000 of those will die. Zika has also been around a while, and it doesn’t seem to kill anyone much, and was thought to do little harm. Recently, though, infection in pregnancy has been associated with some 2,311 cases of microcephaly. That’s pin-head babies, and they make for great newspaper fodder. I’ve no doubt that sounds callous, but it’s an indication of the extent to which photo-ops lead news coverage in today’s screen-obsessed world. The Time’s Zika scorecard story managed to include THREE baby-and-parent photos (and one pic of a mosquito-fogger).

It’s also a perfect illustration of two of the other parameters that affect the importance we give to different diseases. One is what in Song of Contagion we’ve been calling the “cuddly-to-icky” spectrum. Deformed babies and their parents quite rightly excite sympathy in people worldwide; that makes it easier to put them on the front page (and to fund) than less endearing “victims”. Dengue affects people of all ages, including kids, but there’s nothing particularly eye-catching about a patient with dengue shock syndrome.

The other parameter Zika illustrates is the “near-to-far” spectrum. Because Zika came to notice in Brazil, in the Americas and just before the Olympics, it seemed much “nearer” to decision-makers in the United States (and journalists at the New York Times) than many other neglected tropical diseases. And with the Olympics planned, people from lots of other countries would draw near to the virus, too. Of course that’s also true of dengue, but without the shock visuals and the hook of an “emerging” epidemic that Zika provides, physical proximity counted for less. Some parameters trump others, in health as in music.

Another aspect of the Times story reflects something I’ve found recently in my research on scientific collaborations. Investigators in low and middle income countries get really cross when researchers from rich countries treat them as second class citizens.

Dr. Ernesto T. A. Marques Jr., an infectious disease specialist at the University of Pittsburgh and at the Oswaldo Cruz Foundation in Brazil, said Brazilian scientists felt let down when they looked for outside help — at first from European donors and health agencies.
“The local researchers’ role was mainly to collect samples,” Dr. Marques said bitterly.
The C.D.C.’s initial reluctance to accept Brazilian scientists’ work also slowed the international response, said Dr. Peter J. Hotez, the dean of the National School of Tropical Medicine at Baylor College of Medicine.
Even when the Brazilians found Zika virus in two women’s amniotic fluid and in the brain of a microcephalic fetus, “The C.D.C. would not accept it until they had done it themselves,” he said.

While racism is not the exactly right word for this sort of inequity, it has the right flavour. In journalism we’d call it “big-footing.” Local journalists toil away for years telling the story of some forgotten place, and then come the revolution, the tsunami or the World Cup, they get “big-footed” by crusty correspondents — usually white men based somewhere much more comfortable — who don’t speak the language or have any useful contacts but who come in to report the big story, snatching all the glory. One day we’ll learn in science as we are gradually learning in reporting that people with deep knowledge of local cultures, politics and ways of communicating are central to great research. I guess this is what Tony, in his musical discipline, calls “authenticity”. It seems creative work in both art and science depends on it.

Help choose Contagion stories: July 11th @ Elizabeth’s

Which diseases will stalk the Hackney Empire next spring? It’s a question we’ve been thinking about since Song of Contagion began. We’ve made a lot of progress to date, with help from many of you. That’s helped refine our thinking, and we’ve a better idea of how the show might work than we did at the start. So we want to ask for a final round of disease input before handing over to the music creatives. We hope to end up with a shortlist that the songwriters and composers can use to start creating the show. If you’ve got ideas, please join Elizabeth for beer, pizza (or other forms of booze and sustenance, depending on how many of you email and say you’re coming) and discussion at her place in north-east London on the evening of Monday July 11th.

Though our discussions so far have been wide-ranging we now want to get focused, not on diseases themselves, but on the different social, political and physical forces that shape our perception of the importance of a disease or illness. We want to choose a handful of diseases which illustrate specific parameters, then develop musical stories in which those parameters can be heard. With input from lots of you, we’ve now come up with a more rigorous list of the parameters which affect our perception of disease. They look like this:
parameters
(click image to download the Word file)

I’m lobbying for a diarrhoea story (Drain Brain?) that starts in 1830 and tells the story of poo-related deaths in London and Calcutta. The British and the Indian music will start off at the same volume because back then, diarrhoea was killing roughly the same proportion of the population in those cities. Then in the 1850s the British music gets deafening — that was the Big Stink and the cholera epidemic that followed. This rattles the Victorians into action, and they start to build drains — represented by the introduction of a didgeridoo as a bass-line to the British music (I’m hoping for a dij because it both looks and sounds like a drain…) As a result, diarrhoea deaths in London plummet. While the dij bass-line carries on, the rest of the British music gets quieter and falls silent. The Indian music, on the other hand, never gets a bass-line. Neither the colonial government nor the many subsequent Indian governments have invested sufficiently in basic sanitation, and tens of thousands of children continue to doe of diarrhoea in Indian cities to this day.
Parameters illustrated: Prevalence, near/far, infrastructure, time.

Other current contenders:
Dengue Merengue (HT Andrew W). Contrasting dengue with zika. Both are viruses spread by the same mosquito, in the same places. Dengue has been quietly killing people for years, and gets virtually no attention. Along comes zika, throwing up pin-head babies at a faster rate than the Brazilians can build Olympic stadiums. Front page news!
Parameters illustrated: visible vs. shocking, cute victims, near/far, press as influencers.

Shell Shocked: the story of mental illness resulting from war and violence. A century ago this was a “pull-your-socks-up” condition. Eventually it became diagnosable (as post-traumatic stress disorder), then pathologised and treated, though arguable only if you are lucky enough to experience it as a soldier from a rich country with a big health-care budget for veterans. The vast majority of civilians in conflict zones are exposed to more shocking violence and loss than intervening troops, but get no care.
Parameters illustrated: Unrecognised to pahtologised, near/far, us/them, Pharma as influencers.

We’ve got a couple more up our sleeves, but you get the picture. We want to hear YOUR suggestions. Please contact Elizabeth with ideas, or if you’re in London, come along at 7.30 on July 11th. If you e-mail info@songofcontagion.com, we’ll send you directions.