Tuesday June 13th to Saturday June 17th
Wilton’s Music Hall, Whitechapel, London E1 8JB
Tickets £10 – £17.50 (concessions available)
Box Office: 020 7702 2789 www.wiltons.org.uk
More details: http://grandunion.org.uk/song-of-contagion.php
What do third-rate ecstasy, flames and superbugs have in common? An organ. This became apparent a a party given by the genius crew at Guerilla Science at which I encountered the Fire Organ, created by maverick engineers
It’s an image regular readers of Contagion may recognise: MDMA put through a mass spectrometer, showing all the particles in the Ecstasy pill (including a lot of shit that shouldn’t be in any pill that a human is likely to swallow). The reason I’ve got it hanging around is that I was looking for mass spec images or real and fake antimalarial drugs. The real ones save lives. The fake ones don’t. Worse, because they often expose bugs to small doses of medicine, they prompt resistant bugs to build up their strength and spread. In other words, they help breed superbugs.
Since mass spec images also look a lot like the output of electronic composition and editing programmes, I turned the Bad Drug graphs over to our music tech partners at CM Sounds, to see if they could reverse-engineer the sound of it. When I saw the fire organ (and as one beer led to another) it seemed too perfect not to close the circle by then trying to play that music back into the fire organ, to recreate the graph in flames. If it works, you’ll be able to see AND hear the difference between good smack and bad, and between medicines that will cure you and those that might kill you. It would bring David McCandless-type beautiful information together with some of the sound nerdiness collected by the folks at the Programming Historian. Wouldn’t that be trippy?
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.
The Song of Contagion project continues apace. Tony and the musicians have been working through musical ideas and now it’s time to think about the lyrics for the songs.
We’ll get together this Saturday, November 5 from 2 PM to 5 PM at The Chapel, 15b Old Ford Rd, London E2 9PJ (Map)
We’ll be kicking around ideas for lyrics for the Song of Contagion performance. On the cards: The Dengue Merengue (why you know more about zika than dengue); Infectious Activism (how HIV activism went viral); A Tale of Two Cities (cholera in London and Calcutta) and much more. All welcome. Please come, bring your friends and your ideas.
Last week, nearly every country in the world got together at the United Nations General Assembly to commit to doing something about the spread of superbugs: bacteria, viruses and other pathogens that are evolving their way around the medicines that treat them. It’s an important step, and one the UK has taken credit for, not without reason. At a bunch of side meetings ahead of the big political discussions in New York last week, speaker after speaker said that the threat of antimicrobial resistance (or AMR, for those who want to avoid the mouthful) had been neglected because it was “not urgent, like Ebola”, “not visible, like zika”, “there are no activist groups shouting about it, like HIV.” It could have been an introductory talk for the concept behind Song of Contagion.
What eventually put AMR on the global agenda was essentially the dedication and clever strategising of a single “champion” — Dame Sally Davies, the UK’s Chief Medical Officer. She looked at the evidence: we’re overusing antibiotics in both medicine and farming, they’re developing resistance fast, and there are no new ones in the pipeline because it’s more profitable to develop drugs that people have to take every day. She decided it was important, and rallied the UK Prime Minister to the cause. Then, very cleverly, Dame Sally outsourced a lot of the lobbying to an economist, Jim O’Neill. Bestower of BRICS, Goldman Sachs superhero and (briefly) UK Treasury minister, Jim is listened to by many in the corporate world (and in the all-important Chinese and Indian governments) who wouldn’t take much notice of even the most energetic health official. Lord O’Neill was the public face of a hard-working team that put together a lot of scary info-graphics based on a lot of solid evidence (and some less solid but certainly scary “blue sky” estimates) that captured the front pages of newspapers as influential as The Economist.
We didn’t actually specify “Champions” on the list of parameters that we think influence decision-making about health priorities.
But thinking more about the “human influencers”, well, they very rarely act as an undifferentiated group. Sally Davies is a technocrat, certainly. But many technocrats before her recognised the threat of AMR without getting 193 nations to sign up to work together to do something about it. She is a technocrat who is also a visionary, a strategist, and a bit of a terrier. She just doesn’t give up until she gets what she wants. So it was with the early AIDS activists. Which raises a question for the musicians engaged with Song of Contagion: what do “champions” sound like?
After a summer researching various options, we’ve come up with a shortlist of disease stories (.docx) that we think provide good illustrations of some of the key factors affecting which diseases are considered “important”. (There’s a one-page summary sheet here(.docx).) AMR is not currently on the list — somewhat ironically, because it is the issue Song of Contagion epidemiologist Elizabeth Pisani is working on right now. So that might change…
We expect to gather anyone who’s interested together to start writing lyrics the first week in November — please contact Sheelah (email@example.com) if you’d like to join in. Soon after that, it’s over to the musicians — we welcome all-comers with open arms. There will be a few music workshops and rehearsals over the winter, ahead of a performance in spring 2017.
My personal Groundhog Day is the biennial AIDS conference, bustling with passionate activits, hopeful researchers, singing orphans. This year’s conference (held in Durban in July) had a greater sense of deja vu than most. After a brief blip of “End of AIDS” optimism at the 2014 conference, even Bill Gates was brought back down to earth: biomedical solutions alone won’t work.
Actually, with 17 million people on effective treatment, we’re much closer to the end of AIDS than we imagined when the AIDS circus last came to Durban 16 years ago. We’re just not any nearer to the end of HIV. As deaths drop off, the number of people living with the virus rises. If you take a squint at the graphs that the musicians are “playing” in the video below, you can see the shape of AIDS deaths (dramatic peak, steep decline — the data are for the US) but also the steep and continuing rise in cost of treatment. Not shown, but even more dramatic, is the rise in the number people who have HIV and are sexually active. So despite the fact that effective treatment reduces the chance of passing on the virus, the number of new HIV infections added to the global pool each year is not falling: around 2.1 million new infections in 2015.
The video comes from Song of Contagion’s very first music workshop; we’ve moved on a bit since then but it does look like HIV will be one of the disease stories we’ll be taking on. (By “we”, I mean the talented musicians shown in this introduction to the incomparable Grand Union Orchestra.)
You can see from their final performances how much work composer Tony Haynes puts in to each piece. Here, with a cast that includes public health nerds and some fine HIV researchers, you can see the very first seeds of what I hope will eventually turn in to one of those classic Grand Union performances:
The image above comes from a book with the sort of snappy title the Victorians were good at: “Sanatory progress:- being the fifth report of the National Philanthropic Association for the promotion of social and salutiferous improvements, street cleanliness; and the employment of the poor : so that able-bodied men may be prevented from burthening the parish rates, and preserved independent of workhouse alms and degradation.”
Basically, it’s about drains. Good plumbing is a one-off investment that saves lives across all age, income and ethnic groups. You need maintenance of course, but basically, decent sanitation is switch we could flick to end cholera and other water-borne killers in much of the world. Which is why I’m still a bit surprised to find studies like this one, published a couple of weeks ago in the New England Journal of Medicine, trying out a single-dose cholera vaccine.
If you’re a adult in Bangladesh, it turns out, a single dose vaccine reduces your chance of getting cholera any time in the next six months by around half. Researchers don’t know how long the effect of a single dose of the vaccine might last; earlier research on a two-dose vaccine suggested that it reduced the risk of getting cholera by half for somewhere between two and 5 years, but the results only included the people who took all of their vaccines at the full dose. In the real world, getting people to come back for a second dose of vaccine after two weeks is a pain. That’s why they’re trying a one-dose regime. But the new study suggests that if you’re a kid under 5 — the group most likely to get cholera in the first place, the single dose vaccine had no measurable effect. And of course the cholera vaccine has no effect on all the other causes of diarrhoea and other infections that are water-borne.
Dreaming up new vaccines, developing and testing them, then delivering them to millions of people — potentially every few years — is a noble (if expensive) enterprise, heavily underwritten right now by the Grand Masters of 21st century philanthropy, the Bill and Melinda Gates Foundation. But we know from the history of cities such as London that investments in “salutiferous improvements” by an earlier generation of philanthropists achieved broader and longer-lasting benefits than a single- disease-specific vaccine, and in a relatively short time. So why the obsession with drugs not drains?
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:
(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 firstname.lastname@example.org, we’ll send you directions.
Yesterday, I had the great pleasure of seeing PJ Harvey perform. Her most haunting song was probably “Dollar dollar”, a song about a boy begging at traffic lights in Kabul. It wells up out of an experience that clearly moved this thoughtful singer deeply when she was collaborating with photographer Seamus Murphy. But for me, standing under London sky pregnant with thunder, it was a song about Nairobi. I could feel my low grade irritation with matatu drivers rising; I could feel my foot hovering over the brake of my tiny (tinny) Jimny jeep; I knew that I hated being confronted with hungry kids with no prospects in life and with a pot of glue hanging from their top lip; and I knew that I hated myself for hating it.
It reminded me that music can prompt emotions (and express injustices) that are at once so universal and so deeply personal. The very emotions that swept me when I first saw the Grand Union Orchestra performing Undream’d Shores, and that led to the Song of Contagion collaboration.
Think we should invite PJ Harvey to contribute some disease music to Song of Contagion?
(Originally published by Elizabeth Pisani on June 13, 2016)
I spent Sunday hanging out with the good musicians of CM Sounds, who showed us what the sitar and the sax could look like if you turned them into musical graphs. What they looked like, in fact, was Ecstasy, when you put it through a mass spectrometer. So many parallels between music and well-being…
(Originally published by Elizabeth Pisani on May 25, 2016)