One of the keys to health literacy is understanding your role, as a patient, in the care delivery process chain: learning what you need to know to ask questions that can help clarify decisions with your clinical team; how to assess the information you’re given to understand what you need to do, or to consider, as next steps in your treatment journey; who to consult for expert input and guidance to fact-check, and gut-check, the information you’re processing and the decisions you’re making.
It’s a lot, particularly when you’re dealing with the impact of what I (and Firesign Theater) like to call “a really big disease.” It’s even more – way beyond “a lot” – if you have to also fight for the right to access treatment for your diagnosis.
This may seem like a problem that belongs to someone in a developing country, not one that happens in the USA, but that’s not the case, far too often. In America, a person given a diagnosis of cancer, or of Parkinson’s disease, or any other “really big” condition, not only has to navigate learning all about that condition, but also has to figure out how to pay for the treatment for it.
In a recent survey from West Health and Gallup, some alarming stats surfaced about Americans and access to medical care:
- 45% of people surveyed feared bankruptcy if they had a major health event (“really big disease” or accident)
- 77% feared that rising costs will significantly damage the U.S. economy
- More than 3 million people borrowed more than $10,000 to cover medical expenses in the past year
Which brings me to my main point here – access to medical care is, I believe, a basic human right. If the system that’s providing your care has been priced out of your reach, and you wind up bankrupting yourself, and your family, to access care, is that really “care,” or a symptom of a broken system?
Sure, the doctors and nurses, as well as the hospitals and clinics where they work, deserve to be compensated for their work. I’m not suggesting that medical care be free. What I am suggesting is that, in the US at least, the goal of the “system” has been to protect the status quo – the revenue stream, which at last official count (2017, from the US Centers for Medicare and Medicaid Services) was $3.5 trillion, of which about $1 trillion is estimated to be waste. Does that sound like a healthcare system, or a RICO scheme? Asking for millions of friends.
Until we, as a nation, confront this issue of access to medical care, and the inequity of access caused by the “chaos behind a veil of secrecy” that marks the pricing of that access, we’ll be stuck in the loop we’ve been in since the end of WWII, when Harry Truman tried to initiate a national healthcare program and got beaten up on the White House lawn by Congress, and the American Medical Association.
America is founded on the idea that every person has a right to “life, liberty, and the pursuit of happiness.” It’s hard to have life, or liberty, or happiness without access to healthcare. Let’s live up to our founding principles, and guarantee healthcare access to all. Anything less, and we’re betraying the American promise.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.