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, 5 Aug 2010 @ 3:34am

    Re: Re: Re: Re: more details

    You've made a lot of general statements that are debatable, but I'm interested in looking at the specifics of this particular case before trying to draw more general conclusions. First let's be clear about the government funded research in this case; it was not patented by Genzyme, it was patented by Mt. Sinai. Mt. Sinai didn't have to patent it, but they did. They could have simply published it and let whoever could make use of it, do so. They didn't do that and that was their decision, not Genzyme's or pharma in general. Second, Mt. Sinai decided to enter into an exclusive licensing agreement with Genzyme. Genzyme may or may not have made exclusivity a condition for their agreement, but surely they have the right to decide how they run their own business and Mt. Sinai was the one who utimately decided who to license and under what conditions. If there were other companies that were interested and were shut out, it was Mt. Sinai's decision, not Genzyme's. Could Mt. Sinai have done better? Well, you could say that they shouldn't have been in the position to make a decision because they shouldn't have patented in the first place. Given the patent, what else could they have done. There's almost no information on the choices they had. If no other company was interested or everyone was demanding exclusivity, what was their best choice? You claim that there are lots of alternative methods of funding further development and, in general, there are, but in this particular situation, what were the alternatives and how well would they have worked? Again, if there is blame to hand out for not taking advantage of alternatives, it falls on Mt. Sinai, not Genzyme. There are real serious issues in trying to translate basic science not only into useful medicines, but affordable medicines. I think that if progress is to be made, it is vital that facts need to be straight and attention needs to be paid to specific details. Deciding ahead of time who the heros and villians are doesn't lead to any progress.

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