Published on September 13, 2017
[Editor’s Note: International keynote speaker and academic lecturer, cancer survivor and advocate "e-Patient Dave" deBronkart penned this original blog for Patient Power.]
As someone whose life was saved more than 10 years ago by the best of healthcare, I find it bizarre that we have arrived in an era where—only in America—there’s a new medical concept called “financial toxicity.” Google it. Or read this ASCO interview on CancerNetwork.com. (Or for a deep, deep dive, far beyond oncology, try the sobering 2017 book An American Sickness.)
Many things astound me about this. One is that medical costs in the U.S. are way out of control, another is that the medical profession couldn’t wrap its head around this enormous problem until it was given a medical name: “toxicity”! Yes, it’s not enough to tell them “I can’t afford this”—that doesn’t get them talking about it. For big discussions to start, we had to phrase it as “You’re killing me here!!” How sick is that?
Well, after 560 speeches and policy meetings in 17 countries over the past 8 years, I’ve learned that it’s not much use to talk to scientifically trained people in terms they don’t understand; ergo, it’s useful to talk in terms they do. So, I’m going to express it here in terms any oncologist will understand: After much consideration, I assert that the American health system has evolved to be precisely analogous to a tumor that can’t stop growing, even when it starts killing its host.
What the heck are we—the people with the problem—supposed to do? In this post, I’ll give my view of the problem (as a businessman who almost died), including the industry structural issues I think are at the root of it, and propose how we, as powerful patients, can start the long process of creating change, while doing what we can to protect ourselves.
It’s not a new subject.
This blog has covered parts of the subject before: The Google search above has links going back years. We also know it takes 17 years for new medical methods to be adopted by half of physicians. So, if we want to be empowered and effective, we need to accept that many providers don’t get it yet. That means we need to share this concept (as kindly as possible), watch out for ourselves, and speak up.
Chin up: academic progress has begun!
It took me years, as an impatient patient evangelist, to accept that it takes a long, long time for attitudes and paradigms to shift—not just in healthcare but in any science. Nobel Prize winner Max Planck has one of my favorite science quotes of all time:
"A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."
I’ve learned that industry-wide change can take a generation or more—but you don’t have to wait, because it always starts with thought leaders who see the new reality. You can be part of that process.
Several patients had the chance a few years ago to participate in what I now see as a major workshop at the National Academies of Science, Engineering and Medicine (NASEM); major because a lot of credibility is attached to the reports that come out of such events. The workshop was about “survivorship”—life after the treatment ends—and my assigned session included financial aspects. You can watch my session here and other patients’ talks here (Kim Hall-Jackson) and here (Mary Scroggins), and other talks from the two-day event in the related links. My slides are here.
What you need to understand.
1. The system wants to grow, and is good at it.
Before we can take effective action, we need to understand what we’re dealing with. Because healthcare in the U.S. is a for-profit industry, most executives have direct responsibility for increasing sales, aka health costs. These are competent people, and look at the results . It’s an amazingly consistent “growth curve” all the way back to President Bill Clinton’s administration, through the Bush years and the Obama years. For the time being, this is the nature of things. What we need to understand as patients is that the system wants to grow and does not want to go out of business.
Remind you of anything? Reminds me of a tumor. I’m not kidding.
2. It’s not necessarily getting the job done
In 2017 I posted about a fancy fire engine that, ironically, fell into a sinkhole, and thus failed to deliver the value it was designed to deliver. The context of the post was a new study in Lancet, funded by the Bill & Melinda Gates Foundation, showing that the U.S. ranks poorly in “amenable mortality,” i.e., whether we succeed in delivering what we know how to do.
What’s a patient to do? Again, the answer is awareness and assertiveness: do what we can to know what the best possible care is, and understand that the “tumor” may not be guaranteed to get it to you, speak up, and even educate each other. (That’s precisely why I’m taking the time to write this.)
3. Bottom line, price and value are out of whack. Result: toxicity.
The result is an astounding graphic from the “Our World in Data” site that I blogged about while preparing for that NASEM workshop. The vertical axis is life expectancy; the horizontal is cost per citizen. Lower life expectancy (consistent with the “amenable mortality” concept) and wildly higher costs.
The truth shall set ye free. But first it will p*ss you off.
Nobody’s sure who first said that, but ultimately there’s power in having a stronger relationship to reality.
Nowhere is that more potent than in cancer. I’ve just finished rereading the Pulitzer winning Emperor of All Maladies (the “biography” of cancer), and boy were we powerless in the centuries when we had no clue what this crab-like disease was … even until the late 20th century! The most brutal example was radical mastectomy—utter butchering of women’s bodies by confident but arrogant doctors, whose word became orthodoxy. But until we understood the nature of cancer—DNA run amok—no amount of butchery had any chance of solving the problem.
And so it is with the “financial toxicity” of the cancerous growth of U.S. healthcare. The evidence is clear that the system is not inherently designed to serve the person with the problem, and equally clear that the good people delivering care are not always attuned to this reality.
Be empowered—for real.
The World Bank defines empowerment as “Increasing the capacity of individuals or groups to make choices and to transform those choices into desired actions and outcomes.” When you think about it, every single thing on this site is about that: improving your capacity to choose and then be effective.
How can you increase your capacity in confronting the financial tumor, in addition to your biological ones?
My single biggest tip, combining all of this, derives from the now-well-accepted discipline of SDM (shared decision-making), in which providers have accepted that the right choice of treatment cannot be made without knowing the patient’s priorities. So, express yourself:
“I know there are a range of options, and the right choice depends on what’s important to us as a patient and family. We are really concerned about financial toxicity. How can we learn about that issue for each option, and make it part of our decision process?”
This positions you as an informed, thinking person, savvy about an important issue. And perhaps most importantly, it opens the door for providers to help you get what you want: “My patient asked for this information—what can we tell them?”
And that’s a “must” for achieving real patient power.
I really admire the work Esther and Andrew are doing to help people all over the world to be informed about this diverse and interesting form of cancer.