Sunday I wrote about the accelerating environmental changes I’m seeing, and how hard it’s become to think ahead. I wrote about a series of wire tree sculptures I saw in a shop that day, which instantly conveyed how it feels to push forward in that environment.
The next day I drove to Vermont to meet artist Randy Adams, selected this one and bought it. (Each sculpture is unique.) It’s perfect for the mood of the time: stiff, strong, resistant.
Today’s post views the tree from the opposite perspective: as hard as we push, the problem’s nature is to resist transformation. For me the tree represents both the strength of the winds of change and the need for resolve in facing them. The structure of our system, economically and culturally, will not adjust willingly. But that doesn’t mean there’s no hope. It does mean it’s up to the individual to think and act responsibly.
For me the odyssey started with a 2009 post that I ran across last week from my old blog “The New Life of Patient Dave,” just after cancer. I had barely started thinking about healthcare, but this post about money was spot-on in every way … except that the problem’s not as pliable as I thought back then. After eight years of exploring every idea I could find, in 2017 I wrote my “hitting a brick wall” post: American healthcare is a malignant tumor that can’t stop killing its host.
Here’s that first glimpse of the mission, ten years ago. At bottom I’ll comment.
A thousand points of pain
February 14, 2009
E-patients, listen up. We have work to do, work we can do.
First, the challenge. Imagine you’re trying to untangle a massive, knotted ball of a thousand strings, and every time you tug on one, you hear a scream of pain.
Now imagine it’s an economic knot, and every scream is a billion dollars of pain.
And now imagine there are a thousand strings in the knot … a thousand points of pain.
That’s the reality we face in American healthcare. It’s a $2.4 trillion knot [2018: $3.65 trillion], severely dysfunctional in that it costs more and has poorer outcomes than any other developed country. Yet as Tom Daschle’s book Critical details excruciatingly, every time we try to improve it by tugging on one part of the problem, powerful parties scream in pain, because they have a lot of money at stake.
(Strictly speaking, it’s 2400 points of pain, each a billion dollars. I’ll stick with the “thousand points of” meme.)
$2.4 trillion is 40 times bigger than Microsoft and Google put together. Imagine if you had to try to fix something that big. How long would it take?
Another view: it’s been said for years that healthcare costs 50% more here per person than in most developed nations. If we could fix that with the wave of a hand, our total spending would drop by one third. And that means we’d instantly cut out $800 billion of business (1/3 of $2.4 trillion). Somebody would be spending $800B less, and somebody would be getting $800B less.
Citizens, that’s going to hurt. And a lot of people are going to fight against it – not because they don’t want better healthcare, but because they have a lot at stake, and it’s tangled.
This is a big issue, but we do need to fix it: lives are at stake. Patients and their families are facing lethal diagnoses every day, and we/they need the system to work better than it does today. And that brings up another way to look at “a thousand points of pain”: there are 1,000 cancer diagnoses in the US every six hours.* We need the system to serve us well. (And that’s not to mention other life-changing diagnoses: Cushing’s Syndrome, diabetes, and so many others. Did you know rare diseases are more common than the most common disease? Rare Disease Day is Feb. 28. Might be a thousand points of pain every hour – in the US alone.)
Personally, I’m starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.
Those thousand points of pain will work on their aspect of the need, and we need them to: I may be an e-patient, but I wouldn’t have dreamed up the high dosage Interleukin-2 treatment that stopped my disease.
So let’s get moving – let’s show ’em how e-patients can git ‘er done! Let’s gather our facts, band together, create new tools, and spread the word to each other.
Shall we band together? I’d love to build a killer-fine list of noise-making, world-changing empowered patient blogs! As new Web tools come online, we can help each other build the new world of participatory medicine.
End of 2009 post
Ten years later, what’s changed? None of those realities has changed. The numbers are bigger but every aspect of the pattern is unchanged.
Even the massive change that ObamaCare brought, which so many fought against tooth and nail, only gave more people access – to the same system, which still costs more and has worse outcomes than any other nation.
All is not lost. Within the system, many individual workers (at all levels) do wonderful things all the time. But that metaphor of a knot of strings, each screaming at any attempt to change the system, is still true. (Take another look at this month’s What’s up with the US health system?)
Everything may be great in your care (as it generally is in mine). But if you as a citizen (or health system employee) want to stop the spending tumor, or improve shortfalls so the US becomes one of the better countries, then we need change. In that case, what are we gonna do? What are you willing to do?
That’s why for me this was the “money quote” in that 2009 post:
Personally, I’m starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.
More to come.
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