Shopping for Health Care: How We Can Use Purchasing Power to Get the Health Care We Deserve
By Deb Gordon
“It’s very difficult to be a health care consumer right now,” said Andrea, age 37. A mother of three, she spoke to me in the midst of her treatment for pancreatic cancer. “It does feel like there are people who would be very hopeless in navigating health care. And that is sad.”
Andrea’s life literally depended on her ability to navigate – and pay for – her care.
After the front-line chemotherapy did not work and her tumors spread, her prognosis was bleak. Surgery – and any hope of a real cure – seemed off the table. Family members despaired. Pancreatic cancer survival rates are abysmal.
Yet Andrea considered herself lucky.
She and her husband found a promising drug being studied in pancreatic cancer, a doctor willing to prescribe it, and the funds to pay for it out of pocket, nearly $15,000 per month.
Most people in Andrea’s condition couldn’t do any of that. The cost alone felt overwhelming, almost insurmountable. “I can't imagine if I didn't have the money to pay for it,” Andrea reflected on the hardships and barriers to care health care costs create for so many. “Knowing it's out there and you can't access it unless you have the money to pay for it, it's just a terrible feeling.”
Not everyone would have found this option in the first place. “People don't know what questions they're not asking. So it's not like you can figure out what you're doing wrong,” Andrea said. “A lot of people don't even know that they're doing anything wrong.”
In our most vulnerable moments when we face illness or injury for ourselves or our loved ones, financial strain is the last thing we need. Yet navigating health care in America now involves our money as much as our bodies.
Stories like Andrea’s and the questions it raises inspired The Health Care Consumer’s Manifesto. The book explores why, when Americans spend nearly a trillion dollars each year out of pocket on health care and insurance, we scarcely recognize our roles as health care consumers.
Americans love to shop: for gadgets, airline tickets, new outfits, the latest smart phone. We love the act of shopping almost as much as the goods themselves, especially in the digital age.
But in health care, many of us lack competence, confidence, or even the imagination to shop. Health care is complicated, stressful, and expensive. We often face decisions at our most vulnerable moments. Sick, scared, or confused, we rarely feel in control of health care decisions.
Despite paying more for health care ourselves, consumers rarely know what costs will be before getting care. We are not often treated to great customer service in health care settings. And we almost never get our money back if a treatment or prescription doesn’t work.
Why do Americans pay so much for health care and get so little?
The Health Care Consumer’s Manifesto reframes health care financial responsibility as consumer purchasing power. By weaving together real consumer stories with clear expert insights, the book demystifies American health care and shows readers why the system is so complicated. This book empowers consumers to take charge of their health care and get the value they deserve.
Why The Health Care Consumer’s Manifesto is a great book club book
When I told people I was researching and writing the Manifesto, they invariably chimed in with their own health care horror story, question, or experience.
But this is not a heavy, dense health care book; rather, it is a book about our money and what we get for it. This is a book about financial vulnerability and economic empowerment. It is a set of stories of frustration, injustice, and resilience.
I learned something from the response to this topic: everyone has a story, even people who don’t think they do.
This book will prompt a lively book club discussion, one that is personal, timely, and necessary. To get the most out of The Health Care Consumer’s Manifesto, discussion topics could include:
- How do you define “health care consumer”?
- Is being a consumer good, bad, or in between? Why?
- Do you feel you are a health care consumer? Why or why not?
- What is your experience making health care “purchases”?
- When did you spend your own money on your health care or coverage?
- How did you make the decision?
- What information, guidance, or support did you have in making the decision?
- What did you wish you had?
- What is your most frustrating health care experience?
- Why health care is so messy?
- Who is invested in keeping it that way.
- Why do you think health care is so complicated?
- Who benefits from the status quo?
- What would it take to create real change?
- If you could wave a magic wand and make health care work better for consumers, what would you change?
Want me to help facilitate your discussion? I can Skype in anywhere, or visit with your group in person if you’re local to Boston. Get in touch with me here, or email me directly at Deb@DebGordon.com with Bookclubz in the subject. We’ll try to make it work.
Ready to Choose The Health Care Consumer’s Manifesto with your book club?
The Manifesto is available as a hard cover on Amazon, but it’s pricey.
Special for Bookclubz members, we have a limited supply of lower-cost paperback version. You can order the paperback on the author website, DebGordon.com. If you order 5 or more, shipping is on us. Use promo code BOOKCLUBZ.