The Cure reads like a Stephen Cook medical thriller. Or perhaps one of those Readers’ Digest drama-in-real-life cover stories, with its subtitle, How a Father Raised $100 Million and Bucked the Medical Establishment in a Quest to Save his Children.
The Cure was made into the movie Extraordinary Measures, starring Morgan Freeman and Matt Damon, earlier this year.
It’s the story of John Crowley and his struggle to save his two children afflicted with a rare genetic disorder called Pompe disease. The book was written out of Wall Street Journal reporter Geeta Anand’s interactions with Crowley, then CEO of a small Oklahoma-based bio-tech start-up called Novazyme. Crowley had invested his own savings to launch Novazyme along with a professor, William Canfield, of the University of Oklahoma Health Services Centre. Novazyme was working on an enzyme replacement therapy for Pompe disease and in 2003 made history when it was bought out by Genzyme Corporation, the world’s third-biggest biotechnology company, for a stupendous $137.5 million.
The Cure is an extraordinarily American story, as Nina Raben, a biochemist from the National Institute of Health, tells Anand: “It’s about hope, it’s about willpower, it’s about belief in happy endings.” And it’s got a true blue American hero. John Crowley attended the United States Naval Academy, went to the Notre Dame Law School and then to Harvard Business School; he’s handsome, with wavy hair and toothy grin (going by the photographs at least), has a way with words, goes to church every Sunday and has a bright career ahead of him. Anand goes to considerable pains to establish Crowley’s inherent potential for great things, the perfectness of his life — beginning the book with his speech as Class Day speaker on graduation day — the better, one suspects, to bring out the unfairness of what happens to him later.
Not that Crowley comes out entirely clean. In portions of the book, he comes across as obdurate, selfish, inconsiderate and even foolish.
But first the barebones of the story. Megan Crowley was only 15 months old in 1998 and her brother Patrick, five months, when they were detected with Pompe’s, a progressive neuro-muscular degenerative disorder, and given at best a few years to live. Not only was the disease extremely rare, but John and Aileen Crowley were also stumped by the fact that scientists were very far from a cure. Determined to save them, John Crowley does everything — trawls the net, liaises with scientists working on a promising line of treatment — before finally zeroing in on a line of action: to get his children enrolled in clinical trials for one of the experimental drugs being developed.
This is the most interesting bit of the novel, one that has valuable lessons for the modern pharmaceutical industry and the treatment of rare diseases. Crowley’s quest to get his children the experimental drug first leads him to float a foundation — a Children with Pompe foundation, so no one could accuse him of bias — so as to raise funds for their treatment. Later, seeing that his foundation wouldn’t get him anywhere — or at any rate he’d been beaten to it by another father who had started a foundation called the AMDA or the Acid Maltase Deficiency Association for his Pompe-afflicted daughter — he joins hands with Dr Canfield, who’d been working on a line of treatment that promised to stabilise the disease.
But the enzyme Canfield was working on would take some time to get to the trials stage, and in a year’s time, Novazyme was sold to Genzyme and Crowfield joins the company as a director in charge of the Pompe programme. The experimental drug — what he calls “special medicine” to his daughter Megan — does get made, but Crowfield is, however, no nearer to getting it to his children because now questions of corporate strategy and favouritism come in: the drug being very expensive to make, it can only be given to children under one year and so on.
This is the most poignant part of the novel, as Anand draws out the heart-breaking frustration of a father, who helplessly sees the drug being given to other children afflicted by Pompe, and they responding to it. In his haste to get the long-winded clinical-trial application process that the FDA mandates started, Crowley even takes a few rash business decisions that backfire disastrously.
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Crowley may be a hero, but he also has feet of clay, ones that Anand does not entirely try to hide. The most damaging one is the issue of the efficacy of Canfield’s enzyme, the basis of the high valuation Genzyme paid for Novazyme. As it turns out, the enzyme proves not very effective after all; more damagingly, the bio-chemical results that the start-up had submitted turn out to have been miscalculations. Worse is Crowley’s abandoning
Canfield while at Genzyme, forsaking the man who’d grown to be his friend.
But Anand doesn’t dwell here, concentrating instead on the children. The book ends with Megan and Patrick getting their first dose of “special medicine” and flourishing into teenage.
THE CURE
Geeta Anand
Random House India
467 pages; Rs 399