This is a letter I sent to President Obama asking him to couple his stem cell bill with a ban on genetic patenting.
Mr. President: I applaud you for signing a bill that allows scientists to perform the needed research to save lives. But now you must take the next, far more difficult, step: you must outlaw gene patenting or the bill you have signed today will be our nightmare tomorrow.
Today, universities and major private corporations have partnered to patent life itself. These conglomeration are halting research, preventing medical testing and keeping vital information from you and your wife.
In your Audacity of Hope you speak of how you felt when your little girl was ill. The truth is that she might well have had a needless crisis; she might have been in an emergency room because some corporation, somewhere patented a more effective treatment and/or test that did not require hospitalization. Of course I am just guessing about that.
But these are well-documented facts: A simple test for breast cancer which should cost $1,000 costs over $3,000 and the owner of Hepatitis C (the Chiron Corporation) is paid millions annually by people who simply want to study it. (That incidentally is also why it is so prohibitively expensive to treat Hepatitis C–and why virtually not a single person who is middle- or low-income is treated for this deadly and infectious disease.) If you or your loved ones get Alzheimer’s it will be virtually impossible for you to get treatment because Athena Diagnostics has patented Alzheimer’s. But of course you are the President of the United States. So you might manage to get treament for yourself and your family. And that treatment might kill you.
This is because certain medications and certain treatments work only with certain people. But the drug companies who own the disease of Alzheimer’s will not tell us (not even if you happen to be the President of the United States) whether the treatment that has been shown to be effective for Alzheimer’s in some people will work for you–or whether it will kill you. Disclosing such information will jeopardize their bottom line. They would rather we die. Literally.
A few years ago, during the outbreak of the SARS disease the three companies that held patents to the three strands of SARS would not allow their scientists to collaborate on a treatment because doing so might have jeopardized their bottom lines. Thousands died needlessly and millions were crippled for life but the pharmaceutical companies in question are doing better than the troubled banks.
And why should these companies own a disease in the first place? They didn’t invent it. But they do–in fact, they own not only many of the most common diseases but 20% of our bodies. If anything goes wrong with that 20% we need the pharmaceutical companies’ permission to get treatment for it. That percentage will grow (and rapidly) now that pharmaceutical companies can play with stem cells.
So, Mr. President I applaud you for giving so many people hope with the stem cell legislation. But now comes the hard part: you must outlaw gene patenting or the hope you have given today will be the nightmare of tomorrow.
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