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CANCER: THE BRAND

Troubleshooting a career and a life...

8/13/2018

 
There is a lot of money to be made in a wide variety of therapeutic areas. There was a time when all of this excess made me angry. If you have ever held the hand of a loved one as they sighed their last breaths perhaps you understand. It doesn't seem like a time to be evaluating what the market will bear. And yes I understand market theory and commodity pricing but this doesn't apply to the pharmaceutical industry or situations when undue risk is a burden disproportionately handed to those underserved in our communities.

When I had my first son I was shown a luxury birthing suite. The nurse seemed utterly sacerdotal while demonstrating the ascension of the computer from bedside back to ceiling--easy access for  entering additional information needed on the fly. Fast forward a few decades and we all recognize  hospital speak--billing and accounting for every piece of gauze and bandaid. 

This video by Kevin (at bottom of post) is the best thing I have seen on LinkedIn for ages. First off, the video adds something. He is engaging and not using video solely because he owns one. It works. The idea of a user manual for leadership style wins the platform. I included his video for you to see what I mean. I also created my own mini guide in case we haven't met.

Often cheeky when asked by clients to find data that supports a preconceived claim; I won't do it.  Either we look at all the data and see where it leads or no bueno and you need to find another data guide. Where do you put your prohibition icons?
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Writer, data analyst, human: a user guide

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Kidding aside, some days it gets hard keeping the faith. I know many of you personally and a percentage of you support the platform through your generous donations, encouraging comments, or the shared commitment to always remember the patient. The most frequent comments are private accolades from many that have salaries that depend on them believing something different. Apologizing for not "liking" or "commenting" or "sharing" because to question the very industry that generates their salaries is too risky. I get it.

My secret sauce though is assimilating technical information from canonical documents written by scientists and industry experts. At the very least, I have questions. Questions that often are not answered by the edited clinical reports I am permitted to review. You know what I mean. We collectively read the immune-oncology phase II claims of success as the FDA keeps pharmaceutical companies giddy with expedited reviews that may or may not work--and may or may not harm the patient.

​I have colleagues that point to the success of the 21st Century Cures Act but I recall the diversion of $3.5 billion dollars from the ACA health care prevention fund over a 10 year period.  

"By law, the Prevention Fund must be used “to provide for expanded and sustained national investment in prevention and public health programs to improve health and help restrain the rate of growth in private and public health care costs.”
Does this bother you? How are you built? What would your user manual say about you?
Maybe we all need to create a user guide. What motivates us? Is it really about profit? Don't some of us "see" the patients through the web of hospital systems, government agencies, payers, and insurance companies? Do you have a compassionate heart and quiet belief that we can do better, listen more reverently, and love more deeply? Not just our own families, but people we may or may not meet each day.

I want to invite you to read a beautiful blog written by a man and woman I do not know. He knows he is dying but isn't afraid to lean into the stillness and wonder of a life albeit too brief but wondrous all the same. Let Life Live Through You is not selling you anything. The blog is a story and a conversation. We are truly being gifted an opportunity to think differently. Don't waste it. 
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I believe that when you read about Doug--not simply a patient with cancer but a father, husband, and grandfather--you might question the data you are being shown. Question the methodology, the mathematical model, the risk--the cost of a life as you price your device or drug. We are not "increased market share", we are people that live humbly and love deeply.

There are real people hoping and silently praying for a miracle. A well thought out health system that is willing and motivated to reduce their consumer base by healing all of us with clean air, clean water, healthier foods, better choices, and better odds.
​
This feels more like a glide path: I experience an inexorable loss of capacity, with some small short term dips along the way: these are the pains and odd symptoms that just have to be endured: constant exhaustion and shortness of breath, balance and numbness in extremities, little purple spots in weird places. I can deal with these.
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And, there is a larger set of symptoms that we have to talk about, consult with our Hospice care-givers, and make decisions about. Creeping paralysis in my left arm and right leg. Newly cracked rib which makes my right side hurt and reminds me of my very real fragility. Numbness on the left side of my tongue (this one is breaking news: feels like I was at the dentist three hours ago and the novocaine is wearing off. But I didn’t go to the dentist, and it’s likely a new site of muscle paralysis, which I’m at all happy about.) My voice is slurry, so I sound drunk, but I’m not. My lucidity and cognitive function are definitely decreasing, I fall asleep at the drop of a hat, and I feel much more focused on the mundane than on the poetic or philosophical.--Doug Silsbee

​Thank you Doug for reminding me why I show up every day. And why that matters. Sleep sweet...

Comments are closed.
    Bonny is a data enthusiast applying curated analysis and visualization to persistent tensions between health policy, economics, and clinical research in oncology.
    Follow @datamongerbonny

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  • Data & Donuts (thinky thoughts)
  • COLLABORATor
  • Data talks, people mumble
  • Cancer: The Brand
  • Time to make the donuts...
  • donuts (quick nibbles)
  • Tools for writers and soon-to-be writers
  • datamonger.health
  • The "How" of Data Fluency