Discover and read the best of Twitter Threads about #MEDX
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Here are some of my favorite books, usually memoirs, written by authors showing how life-changing disease transforms us physically, mentally, and spiritually. These are my inspirations in my writing:
First is brain surgeon Paul Kalanithi’s memoir “When Breath Becomes Air.” The 2017 Pulitzer Prize finalist chronicles his journey through fatal lung cancer. It’s about all the things that make worth living and how to best use our dwindling time on earth
Another key one is @rgay’s “Hunger.” In reading a queer woman of color’s lifelong relationship to obesity and body shape, a few childhood traumas drove a lifetime of eating behaviors. Each of us has an “unruly body” somehow. Acknowledging that validates our humanity
Considering that every email I get from @statnews includes a "sponsored by @PhRMA" banner, seeing this does not surprise me. Nor does PhRMA's willingness to lie about their true purpose: shareholder value outstrips human life.
Also high on @PhRMA to-do list is making sure only T1Ds with $$, Hep-C patients ditto, and CF patients too. And let's not forget cancer patients, including children, who find themselves on the receiving end of shortages - yes @TevaUSA I'm looking at you - or straight up cut-offs.
Correction, only T1Ds w/$$ et al CAN ACCESS LIFESAVING MEDICATIONS.
This is a perfect illustration of what "tokenism" looks like in a "patient advisory council."
Folks, it's tokenism if it looks fascinating but you have no power to influence decisions that you think are important. NOT FREAKING SHOE COLOR. Or lobby waterfalls. #MedX
Folks, it's tokenism if it looks fascinating but you have no power to influence decisions that you think are important. NOT FREAKING SHOE COLOR. Or lobby waterfalls. #MedX
#MedX Here's a great tweet with a classic image of Arnstein's Ladder of Citizen Participation (1960s). On rungs 6-8, the citizen has actual power to decide what gets discussed and what decisions get made. Below that is defined as token participation. Tokenism.
#MedX AND here's the URL to that tweet with the classic image.
