Compared to, say, espionage or alien warfare, the drug development business rarely appears on the big screen, and its few cinematic portrayals generally involve sinister white-coated characters doing shadowy experiments. In that sense, the new film Extraordinary Measures, in which a desperate father and biochemist race to develop a cure for a rare genetic disease, marks a refreshing departure. Although not exactly the stuff of industry jingles, there are no bad guys here, either.

Brendan Fraser plays John Crowley, whose two young children suffer from the inherited acid maltase deficiency, Pompe’s disease. As his kids descend to death’s door while the doctors helplessly wring their hands, Crowley, a drug company marketing executive, decides to take matters into his own hands.

Faced with a similar dilemma, Denzel Washington’s character in the 2002 film John Q held an entire emergency room hostage; while Susan Sarandon and Nick Nolte as distraught parents in 1992’s Lorenzo’s Oil did groundbreaking research. Crowley, a businessman who has "everything under control", as his wife smoothly intones, opts for the miracles of the market. In partnership with curmudgeonly biochemist Robert Stonehill, played by Harrison Ford, and a slew of supercilious venture capitalists, Crowley launches a biotech startup aimed at bringing a lifesaving Pompe drug into clinical trials.

Loosely based on Crowley’s real-life role in the development of Genzyme’s drug Myozyme (alglucosidase alfa)-as described in Geeta Anand’s fine 2006 book, The Cure-the film chronicles an array of challenges on the path to the wonder drug. Stonehill’s academic research is promising, but his university pays its football coach more than his entire research budget, despite his brilliant scientific breakthroughs. Tight-fisted venture capitalists won’t underwrite Crowley and Stonehill’s startup unless the drug can be brought into clinical trials within the impossible timeframe of 12 months. The biotech giant that ultimately buys the startup won’t develop the drug until convinced they can capture a profitable market.

Much of this will be enlightening material for viewers unfamiliar with the travails of drug development. To its credit, the fi lm neither shies away from the heartless calculations of commercial research, nor condemns them; after all, regulators must be appeased and the costs of doing business recouped. And there’s some good fun to be had watching an old action-hero star defend the virtues of scientific freedom.

It’s too bad that the fi lm’s emotional depth rivals that of an afternoon TV special. Keri Russell, who plays Crowley’s wife Aileen, cares for two dying children in wheelchairs with a bland perkiness. You’d think she’d spent the afternoon vacuuming.

Brendan Fraser’s soppy portrayal of Crowley has him meeting every business setback with the woeful dutifulness of a dog delivering a wet newspaper. Stonehill’s character is particularly shallow. He’s meant to be an eccentric academic-we know this because he’s shown blasting Grateful Dead and guzzling Budweisers while scribbling mathematical gobbledygook on his chalkboard-but he comes off more like a petulant diva, fl ouncing off whenever anyone off ends his delicate scientific sensibilities. He expounds on his commitment to research-"I don’t care about money! I’m a scientist! I care about more important things than that!"-and yet dumps his university lab for a $6 million cheque and a job at a biotech company.

But what really had me scratching my head was the film’s presentation of the obstacles to creating a drug for Pompe’s disease as primarily economic, rather than scientific and technical. The technical challenges in synthesising enzyme-replacement therapies are legion. Genzyme is still plagued with manufacturing difficulties, with the US Food and Drug Administration (FDA) discovering particles of trash and viral contamination in some of its enzyme-replacement drugs last year. By contrast, economic obstacles to development are minimal. Regulatory authorities provide generous incentives for orphan drugs, and insurance companies can be shamed into paying astronomically high prices for them.

That’s why Genzyme and its cinematic counterpart already had three drugs for Pompe’s disease in the pipeline before buying Crowley’s startup (the one they ended up launching was not Crowley’s). And it’s why about a third of all new drugs approved by the FDA last year were the so-called orphan drugs, aimed at rare diseases. Myozyme, priced at $200 000 a year, netted Genzyme over $300 million last year. What demands superhuman action is launching drugs and interventions that aren’t profitable for drug companies, such as those that are off -patent, or which cater to the illnesses of the poor and poorly insured. John Crowley is undoubtedly a driven, heroic figure. But for bringing a lucrative drug like Myozyme to market, few "extraordinary measures" are really required.

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From my grandmother's second-floor back porch in dusty Coimbatore, I could see the villagers squatting on the crest of the hill, their naked bums neatly lined in a row for the daily purge. At age seven, this was a mesmerizing sight. I gained a reputation for dreaminess, for nobody knew what I was really looking at, resting my head on my arms and staring off into the distance for hours at a time. Up north, at my father's mother's tenement flat in Mumbai, there were toilets to use, but these were located at the end of the open-air hallway, next to the wet, reeking terrace where the building's servants sloshed water on dal-spattered steel plates. The doors to the stalls were covered in a living carpet of brown and green. I avoided them as much as possible, resulting in daily stomach-aches, to be soothed with neem oil. To indulge me, I was sometimes allowed to shit on newspapers in the bedroom, which were then wrapped up and tossed out the window into the alley.
People, I knew, slept in the alley. I had stumbled across a child down there, once. The bottom half of his leg was greyed and pimpled, bloated into a fat cylinder by filarial worms. His toenails stuck out from under the heavy folds and flaps, tiny shards.

As an American-born child, sent to stay with relatives in India every summer, all of this was shocking, and fascinating. Back at home, wads of gossamer-thin, perfumed paper tissue, imprinted with lacy designs, were used to cushion each tiny smear of snot as it swirled down the commode's shiny porcelain. Here, people cleared their nasal passages directly into a stinking gutter. All of this-the poverty, the disease, the disparity-must be related, I thought. For a seven-year-old, every mysterious thing in the world is secretly connected. Growing up meant figuring out how. - Sonia Shah, February 2006

Sonia Shah is an investigative journalist and critically acclaimed author whose writing has appeared in The Washington Post, The Boston Globe, New Scientist, The Nation and elsewhere. Her 2006 drug industry exposé, The Body Hunters: Testing New Drugs on the World's Poorest Patients (New Press), has been hailed by Publishers Weekly as "a tautly argued study…a trenchant exposé…meticulously researched and packed with documentary evidence," and as "important [and] powerful" by The New England Journal of Medicine. The book, which international bestselling novelist and The Constant Gardener author John Le Carré called "an act of courage," has enjoyed wide international distribution, including French, Japanese, and Italian editions.

Her 2004 book, Crude: The Story of Oil (Seven Stories), was acclaimed as "brilliant" and "beautifully written" by The Guardian and "required reading" by The Nation, and has been widely translated, from Japanese, Greek, and Italian to Bahasa Indonesia. Her "raw and powerful" (Amazon.com) 1997 collection, Dragon Ladies: Asian American Feminists Breathe Fire, still in print after 10 years, continues to be required reading at colleges and universities across the country.

Shah's writing, based on original reportage from around the world, from India and South Africa to Panama, Malawi, Cameroon, and Australia, has been featured on current affairs shows around the United States, as well as on the BBC and Australia's Radio National. A frequent keynote speaker at political conferences, Shah has lectured at universities and colleges across the country, including Columbia's Earth Institute, MIT, Harvard, Brown, Georgetown and elsewhere. Her writing on human rights, medicine, and politics have appeared in a range of magazines from Playboy, Salon, and Orion to The Progressive and Knight-Ridder. Her television appearances include A&E and the BBC, and she's consulted on many documentary film projects, from the ABC to Channel 4 in the UK. A former writing fellow of The Nation Institute and the Puffin Foundation, Shah is currently writing a book on the history and politics of malaria for Farrar, Straus & Giroux.

Shah was born in 1969 in New York City to Indian immigrants. Growing up, she shuttled between the northeastern United States where her parents practiced medicine and Mumbai and Bangalore, India, where her extended working-class family lived, developing a life-long interest in inequality between and within societies. She holds a BA in journalism, philosophy, and neuroscience from Oberlin College, and lives with molecular ecologist Mark Bulmer and their two sons Zakir and Kush.



 

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