Profits come before cures

IN HIS new film Extraordinary Measures, Harrison Ford plays a character that is the opposite of his most famous role, the whip-wielding Indiana Jones. Ford is Dr. Robert Stonehill, a cantankerous, loner scientist who listens to loud rock music in his laboratory in the middle of Nebraska. He is a leading researcher of enzymes.

Brendan Fraser plays John Crowley, a marketing executive for the pharmaceutical giant Bristol-Meyers Squibb. In an early scene, Crowley is on the phone and says something that comes back to haunt him in the course of the film: "It's my job to market drugs to kids. They won't take it if it doesn't taste like bubblegum."

Crowley and Stonehill are destined to meet because Crowley's two children have a rare inherited disorder called Pompe disease. Stonehill's research holds the key to treatment and possibly a cure. Because the life expectancy for Pompe disease is nine years and the kids are fast approaching that age, Crowley flies to Nebraska to meet the researcher.

Crowley learns that Stonehill can't get funding for his research, and he decides to leave his secure position with good health insurance to become a venture capitalist to raise money for the research. The two men go into the bio-tech business, name their company Priozyme, hire a small cadre of committed young scientists and get to work. Stonehill tells Crowley, "I do the science; you make the sale."

Crowley's stay-at-home wife Aileen, played by Keri Russell, organizes the parents of children with Pompe disease to raise money and awareness through the creation of the Pompe Foundation. This is one of the most important aspects of the film and shows that, when people organize, they can make change and also provide much-needed emotional support for one another.

THE CREATION of the Pompe Foundation raises vital questions the movie never answers: Why is it parents need to organize backyard barbecues to raise money to find treatments and cures for diseases? Why isn't the government, which has our tax dollars, or the outrageously profitable pharmaceutical industry doing that research?

Priozyme soon runs out of money, and Crowley makes a deal with the devil and arranges for it to be bought by a pharmaceutical company called Zymagin. Company executives fly from Seattle to Nebraska by private helicopter to discuss the acquisition. Stonehill cynically remarks, "No ordinary people helicopter in."

At the meeting, one of the executives declares, "I need to hear about profitability," and another wants to know what the acceptable rate of patient death is. Crowley is silently horrified--because his children could become a statistic. Once work begins in the labs at Zymagin headquarters in Seattle, the priority quickly becomes evident--bringing the drug to market quickly so that it will make super-profits.

Competing research teams are created to discover the key enzyme. Crowley disagrees with this approach and makes a crucial observation about the drug industry--competition slows down the development of drugs, and what's really needed is cooperation among researchers.

The CEO of Zymagen puts enormous pressure on Stonehill and the teams to bring a compound into clinical trials and threatens to pull the plug on the project. Crowley's desperation grows by the day, as he watches his children become more debilitated and the researchers fail to make any breakthroughs.

The film is full of suspense once the action moves into Zymagen's posh, stainless steel and glass research buildings. The pharmaceutical industry is a shadowy, off-limits-to-the-public parallel universe, where information about medicine is proprietary and patented, and medical "trade secrets" are guarded by armed security officers. When Dr. Stonehill first arrives at the building, he has to get security clearance to use the bathroom.

Crowley's daughter Megan, played with spunk by Meredith Droeger, keeps the film grounded. She zips around the house like any kid--except in a top-of-the-line power wheelchair. Despite her disability, she's integrated into the community, and has friends and a busy social life.

Class determines how disabled children function in the world, and the Crowleys are upper middle class and have the money and help to raise three children, two with profound health impairments. Their spacious home is wheelchair accessible, and they own a van with a wheelchair lift. It is not so for poor and working-class children with disabilities: life is a constant struggle to qualify for basic resources.

Two children with serious medical needs who must be attended to constantly is enormously stressful, despite the realities of class. The film doesn't show enough of how messy and complicated life becomes and instead makes the Crowleys' life look too easy and mostly problem-free.

The film exposes the cold calculations that go into the research and development of new drugs but misses the opportunity to raise deeper questions about the pharmaceutical industry. The main characters don't question why drug companies have no interest in so-called "orphan" diseases--rare diseases that afflict few people, often only in the thousands.

The fact that a disease can even have such a designation speaks volumes about how the industry views its role in the development of life-saving medications. Drug manufacturers aren't interested in bringing drugs to market unless many people will buy them--and therefore ensure lots of profits.

The result is that little to no money is spent on finding treatments and cures for "orphan" diseases, and families find themselves in desperate situations, watching their loved ones die.

Extraordinary Measures, like Lorenzo's Oil, is based on a true story of a family that fought back and organized to demand money for research. But not every rare disease will find a tenacious champion or enough money.

Toward the end of Extraordinary Measures, the story takes several dramatic twists and turns that will keep viewers on the edge of their seats.

The film shows the lengths a family will go to in order to save their children and illustrates the skewed priorities of the pharmaceutical industry. Unfortunately, for millions of people suffering from various diseases with no research being done to find a cure or medication to treat it, there is no happy movie ending.