Anyone who has received healthcare in the United States can tell you how expensive it can be, even with insurance. Cost is a significant factor in decisions not to seek medical care, including medication. EpiPens can cost $700, insulin can cost $1000/month, and a 12-week course of hepatitis C medication can cost $95,000. West Health Policy Center reported that 1.1 million Medicare patients could die over the next decade due to inability to afford needed medications.
Patents are one of the ways that pharmaceutical companies protect their investments in the medications they design and produce. Such protections are provided by law as an incentive for innovation in medications. As librarians, we have an ethical mandate to protect intellectual property. That mandate is usually applied to copyright as applied to the circulating materials in our libraries, but does include patents and other forms of IP law. We are bound by ethics to not include instruction manuals for how to violate the intellectual property rights of others within our stacks.
But there are those who take a different ethical stance: that withholding medication from people who need it to survive, including behind a paywall, is unethical behavior and that following laws that enforce such paywalls is similarly unethical. Groups like the Four Thieves Vinegar Collective publish information on creating home biochemical reactors and instructions for using them to create medications like Sovaldi, which carry a price tag of $84,000, from the comfort of one’s own home. While making one’s own medication carries risk, when the alternative is an inability to access that care at all, it’s a risk many are willing to take.
So, if someone offered you plans for a do-it-yourself bioreactor with instructions on how to make medications, would you include it in your collection? Do the rights of IP holders outweigh the right to life of people in your served community? Does the potential liability for user error factor into your decision? How does this compare to “home remedy” options already in your collection? What if the medicinal options presented were those used by indigenous peoples prior to colonization? Do you think making this information more widely available will impact pharmaceutical companies enough to dissuade them from creating new drugs?
I don’t think there’s an easy ethical answer to this balance question. However, I do believe that current legal policy strongly favors large pharmaceutical companies at the expense of everyday people, and that as a librarian I have an ethical duty to advocate for a power shift in the opposite direction.