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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. identicon
    DrZZ, 4 Aug 2010 @ 3:34am

    Re: Re: more details

    Well, since the patent does exist, any statement about what would have happened if the patent didn't exist has to be at least some guesswork. It's not hard, however, to see why a company would want exclusivity. A good chunk of the costs are fixed; you have to come up with a manufacturing method and you need to prove that the method can produce consistent, safe product. In this case, you also had to fund all the clinical trials necessary for FDA approval. None of these steps are guarenteed success and there is a very small patient population to absorb these costs. If the patient population needs to be shared, it makes the risks that much greater. Did all this add up to a situation where Genzyme decided that if they didn't get exclusivity, they would not make a deal? I don't know for sure, but I would not be at all surprised. Did any other company express interest and did they demand exclusivity? Or did Mt. Sinai take the offer that gave them the most money? I would be very interested to find out.

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