With Medicare for all emerging as a defining issue in the 2020 election, single payer health care seems more plausible than ever. But for Medicare for all to truly work for all Americans it must do more than provide uniform, basic insurance. It must also create room for consumer-driven choice.
Deborah D. Gordon
In more than 60 consumer interviews for my Harvard Kennedy School research on health care purchasing, I repeatedly heard anger and frustration from consumers who felt the available options just did not work for them. While some consumers felt helpless and resigned to a poorly functioning health system, others expended great personal energy to extract the value they wanted.
In some cases, navigating the system was more than a hassle; it was a matter of life and death.
The stories of two consumers—Leah and Andrea—illustrate how consumer-driven health care can save lives. To protect their privacy, their names have been changed.
On Easter Sunday in 2015, Leah, a married, 43-year-old mother of a young boy, headed to the emergency room with excruciating abdominal pain. She questioned whether she should bother, but a family member insisted she go. After a battery of tests, Leah received a shocking diagnosis: stage 3 ovarian cancer. She started on a treatment plan and set off to fight an often-lethal cancer.
Leah can’t quite explain her treatment’s costs. “It’s so awful to look at hospital bills, even though most of it is covered.” She imagines the drug keeping her alive, Lynparza (olaparib), is extremely expensive. “I don’t even want to know what this medication is costing my insurance.” She speculates it is “thousands and thousands of dollars.”
Her husband had gotten a job two months prior at a regional bank with generous family health benefits. Nonetheless, Leah accumulated a balance bill that hovers constantly around $1,000. She pays it down $65.54 a month.
A few states away, Andrea knows exactly what Lynparza costs. A young mother, she first went to the emergency room in 2017 with jaundice and severe itching. Her diagnosis was similarly devastating: pancreatic cancer. Facing a 9% five-year survival rate, Andrea felt overwhelmed by bleak odds. Her cancer didn’t respond to the first-line chemotherapy, and tumors spread to her liver. She and her family feared the worst.
Andrea traveled to get several medical opinions. Expert advice led her to genetic testing and to Lynparza, approved for breast and ovarian cancer but still experimental as a pancreatic cancer treatment. “I had the option of going into a [clinical] trial,” she explained. “But the trial has people on a placebo. At 37 years old, with three young children, I wasn’t willing to take the risk that the cancer could metastasize more.” Instead, she decided to pay for the drug out of pocket. The monthly bill? $14,700. Andrea and her husband, a real estate executive, use savings to pay for it.
Leah and Andrea are like two different shoppers preparing for a formal gala. Leah walked into a high-end designer store and found a dress on the rack; the standard size fit with no alterations. Maybe she even found it on sale, putting the still-pricey dress within reach. Andrea chose to commission a custom gown to get one that fit her well, at great expense. They both look fabulous but arrived at the same outcome through very different means.
Leah benefits from an effective treatment that has been studied, approved, and is now the standard of care for her cancer. She credits a maintenance dose of Lynparza with keeping her in remission. Under Medicare for all, more people like Leah would likely have access to the same life-saving treatment, made affordable through broader insurance coverage.
Andrea, on the other hand, had to forge her own path, an option she may not have in a single-payer system. Her initial treatment was based on protocol, not her specific situation. That protocol didn’t work, so she sought a personalized solution. “If you have caregivers and you, yourself, are feeling well enough to do research to find out about all these trials, I think the information is out there, but it requires a lot of time and effort.”
Like shopkeepers with set inventories, Andrea’s doctors offered what they had, but no more. “I’m my own advocate. My husband’s my advocate. We are the quarterbacks, we’re in charge of the process.” She learned to play this role when it became clear no one else would. “I’ve always trusted my doctors and did what they said. This was my first experience with health care where I realized it’s not up to them, it’s up to me, and I need to figure things out for myself as to how I want to be treated, where I want to be treated, and when.”
Andrea’s efforts paid off. The drug is holding her cancer markers in the normal range. “For me it was a life-and-death situation. We wanted to do anything that we could to keep me healthy and alive.”
Would Medicare for all afford Andrea this choice?
Today, we have potential cures for the worst cancers. If you have one of those, you may be able to trust the standard of care, accepted as such because best-available evidence suggests it holds the most promise for the most people. In this camp, Leah leans heavily on her doctors’ guidance.
“I feel these are the best doctors, probably in the world for what I have.” She rarely questions them. “I let the doctors worry about that. I just feel like it’s their job, they get paid the big bucks to think about this stuff, and then I just do what they tell me.” With insurance, their recommended treatment is likely to be covered.
If you don’t fit the mold, you still might be able to get the best care, but only if you’re willing and able to find it for yourself. You may also have to foot the whole bill, which is impossible for many people.
Perhaps a reluctantly empowered health care consumer, Andrea benefited from free-market forces not always at work in American health care. She first rebalanced the classic information asymmetry between patients and doctors—in which patients must rely on doctors for answers—and found a nonstandard path to life-saving treatment. Her economic circumstances gave her options that others don’t have; her drug costs many times most people’s rent or mortgage. “I can’t imagine if I didn’t have the money to pay for it,” she says. “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.”
Today, only the very wealthy and extremely resourceful get early access to the most promising treatments until they become the standard. Single-payer schemes don’t typically offer flexibility to deviate from that standard, but Medicare for all proposals should strive to distribute such access more equitably.
These proposals should also provide consumer support. When the stakes are life or death, not all consumers can act as their own health care advocates, nor should they have to.
Andrea was able to self-advocate thanks to a mix of privilege—financial means, a supportive family and strong community, and a lifetime of elite education—and tenacity born of hardship. When she was a teenager, her father left while her mother was hospitalized. The traumatic separation left her largely on her own to parent herself. This personal history equipped her with the resiliency to navigate a terrifying diagnosis without institutional support.
Even before Andrea’s financial resources came into play, hard-won transparency allowed her to advocate for a treatment about which she otherwise would not have known. “I think it’s very difficult to be a health care consumer right now,” Andrea observed. “People don’t know what questions they’re not asking. So it’s not like you can figure out what you’re doing wrong. A lot of people don’t even know that they’re doing anything wrong. They’re just kind of going through the process. They don’t know that there are other options out there. And I don’t think that the options are always provided to them.”
In the health care market, information may be as valuable as effective treatment; without information (in combination with the tenacity to uncover it), consumers may never find options that work best for them.
To help other consumers achieve Andrea’s level of empowerment, not only do treatments need to be more affordable and accessible, but information about options must also be more accessible—and their financial implications more clear. Support through a new system of health care advocates should also be available to help consumers who lack capacity to find and process information on their own.
For any given condition, there will be people like Leah for whom the standard approach works. But there will also be Andreas, consumers who need a tailored approach and who, today, must aggressively engage to find solutions the system does not readily offer.
In health care, as in fashion, consumers need different options. To truly reform health care, solutions must allow customization and consumer choice.