In an industry noted for greed, sharp tactics and lack of social conscience, the drug company Genzyme has managed to set a new standard for depravity.
Yes, depravity. Genzyme’s latest strategy for amassing outsize profits, proudly described by company executives in today’s Boston Globe, is, in my judgment, nothing short of morally depraved.
Genzyme, as its name implies, has pioneered the use of genetic engineering techniques to create and manufacture drug treatments. The greatest potential of genetically engineered drugs lies in treatment for so called “orphan” diseases, those they afflict very few people, not nearly enough to form support groups, charities and public advocacy groups that pay for treatment. Although many companies have had success in creating novel, highly effective treatments for orphan diseases, they find it hard to profit from such treatments, because demand is very low.
Orphan diseases, by their very nature, are often difficult to diagnose and require sophisticated medical equipment and training to even identify. The chances of an orphan disease being diagnosed in the third world, let alone being treated, are extremely remote. Genzyme’s new corporate strategy is to search the third world for children suffering rare diseases, provide the technology and equipment to make the diagnosis and then attempt to force the government of the third world country into paying for the extraordinarily expensive treatment by diverting money that would otherwise be used to provide basic medical care for large numbers of people.
The idea is pure genius. By identifying a specific child who will die without treatment, by informing the child’s family that a lifesaving treatment exists, but will be withheld without full payment the drug company is able to exert far more pressure on the specific government than they could by a simple announcement that 1 or 2 children in any given third world country might benefit from the treatment.
The Globe details how this technique works in practice. Consider Tania, the Costa Rican girl, who is dying of the rare genetic disease Gaucher’s. Tania’s family did not know what was killing her, and they would never have known, if it were not for Genzyme’s efforts to find and identify Tania, and inform her family of the treatment that could save her life, the drug Cerezyme, at the cost of $160,000 per year:
Genzyme created divisions within the company to find overseas patients …
Costa Rica was part of this plan, a nearby country whose government, though poor, dedicates much of its budget to healthcare. Company executives began flying to the region and meeting with the person most likely to diagnose a Gaucher patient: Dr. Manuel Saborio Rocafort, who runs the only medical genetics department in Costa Rica. So when Saborio heard about Tania, not only did he know that he should test her for Gaucher disease, but he had the testing kit ready: Genzyme had provided it.
But Genzyme did not go to the trouble and expense of finding and diagnosing Tania in order to save her life. Their avowed corporate strategy involves letting her die, unless Costa Rica will pay the full $160,000 per year for Cerazyme. Absolutely no discount is allowed.
Lest anyone doubt that this is a deliberate corporate strategy, consider:
In Genzyme’s new glass Kendall Square headquarters, the president of the firm’s international group, Sanford Smith, keeps a brass gong outside his office. Every time a foreign government agrees to pay for one of the company’s drugs, he takes out a mallet and rings it.
Presumably, they rang the gong for Tania when Costa Rica agreed to pay the full price, the only price at which Cerezyme can be obtained. Yet the Costa Rican government is not without misgivings:
The Costa Rican healthcare system has survived paying for Tania’s medicine. What worries its leaders is the precedent. Energized by Genzyme’s success, more companies have developed high-tech drugs for other rare diseases. Genzyme’s pricing approach has become the standard for similar drugs…
It is difficult to imagine a corporate practice that is more ethically and morally depraved: deliberately identifying third world children whose lives can be saved by extraordinarily expensive drugs, refusing to provide those drugs at a discount or for free, and then ringing a brass gong to announce that another third world country has been blackmailed into diverting a large share of its healthcare budget to one child, and away from simpler medications and strategies that could save thousands of lives.
The executives responsible for this strategy should be ashamed.
Anyone know if Genzyme is writing off expenses related to identifying and diagnosing patients?
Treating, not curing.
I would cringe, but not be outraged if the cost of curing someone of a genetic disease was over $100k. I’m sure Angelina Jolie would be overjoyed to have her BRCA-1 gene fixed for that price. I’m sure that insurance companies would be happy too.
Alt med types will insist through the magic of “quantum” and “epigenetics” that you can fix genetic defects via supplements and diet.
If only that was true.
It’s pinpoint accuracy targeted marketing.
Wow I never heard this term this must be what idiopathic hypersomnia is.