A one-minute video of Congresswoman Alexandria Ocasio-Cortez has been going viral on social media; she highlighted how public money invested in drug development ultimately gets privatized:
https://twitter.com/AOC/status/1091126335274143751
This week I conducted my first-ever line of questioning at an Oversight committee hearing, which focused on the skyrocketing costs of pharmaceuticals. Here’s what happened
Last summer, I wrote a blog post on this topic titled, Biomedical Knowledge Must Be Mobilized to Save Lives, Not Privatized in the "Last Mile" that was originally published on the Society for Participatory Medicine (S4PM) blog, and subsequently picked up almost in its entirety by the prestigious The Health Care Blog (THCB) -- sometimes informally referred to as the New New England Journal of Medicine.
(with this
subsequent post S4PM had me write, sharing the announcement that "we the patients" are being heard.)
I highlight the theme of private entities profiting by privatizing research that is originally publicly funded, but expand the theme further by underscoring a number of other ways knowledge generated from lots of people's experiences and lots of people's work gets privatized in the "last mile". Leading patient advocates and privacy advocates have shared this blog post.
Here was my closing paragraph:
A decade ago, Internet hacktivist Aaron Swartz published the “Guerilla Open Access Manifesto”. Whether or not one agrees with his proposed solution, his statement of the problem merits repeating: “Information is power. But like all power, there are those who want to keep it for themselves. The world’s entire scientific and cultural heritage, published over centuries in books and journals, is increasingly being digitized and locked up by a handful of private corporations.” Mobilized and actionable biomedical knowledge is literally the power to save lives. Now is the long overdue time to catalyze a national (or international) dialogue vis-à-vis democratizing this power; in dollars and in human lives, we cannot afford the cost of failing to do so.
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