by Mike Masnick

Filed Under:
fabrazyme, fabry, health care, patents


Patents Getting In The Way Of Saving Lives; Fabry Disease Sufferers Petition US Gov't To Step In

from the patent-problems dept

Whenever I read stories like this one, it just makes me wonder how people can defend patents in certain situations. Genzyme is a pharma firm that has a patent on a drug, Fabrazyme, which is used to treat Fabry disease, an enzyme deficiency that can create very serious problems in those who have it -- including kidney failure and heart attacks. The problem? Genzyme apparently can't produce the supply needed by patients. Now, in a true free market, when supply was less than demand, a competitor would step up production, but (oh wait!) there can't be any competitor, because the patent means that Genzyme is currently the only one legally allowed to make the drug. Now a group of patients who have been forced to ration their dosage at one-third the usual amounts, leading to serious health problems and at least one death, has petitioned the government for the right to break the patent.

They're not trying to completely strip Genzyme of the patent. They're merely asking the government to let others produce the drug, and pay Genzyme a mandated 5% royalty. Now, I know the typical response from patent system supporters: without the patent, perhaps this drug wouldn't even exist. The only problem with that is that it's almost certainly not true. The actual research for Fabrazyme was actually done by the Mount Sinai School of Medicine financed by the National Institute of Health. Yes, you read that right. This drug was discovered with taxpayer money... but they were still able to get a patent and then license it to Genzyme.

Chances are this petition won't be approved. These petitions are never approved. But it does highlight the ridiculousness of the current patent system potentially putting people at risk. It's a travesty that federally funded research has been locked up under a patent and limited to only one producer, leading not only to very high prices for the drug, but also excessively limited supply that is putting people lives in danger, and may have already killed one person.

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  1. icon
    Hugh Mann (profile), 3 Aug 2010 @ 3:53pm

    Re: Re: Only Genzyme can produce the drug?

    Well, is the assertion that there are companies ready to manufacture the drug in sufficient quantities, and Gensymze is refusing to license to them?

    And is a 5% royalty customary in pharmaceutical patent licensing deals?

    Regardless of good intentions, I get very nervous when the government is called on to sieze or otherwise control private rights or property. Should we also put salary caps on the doctors who will then administer the drug to the patients?


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