By Sarah Wildman
My health insurance doesn’t really protect me, but like a lot of people out there, according to recent polls, I’m afraid to lose it. Despite my fear that speaking out might end up costing my family our coverage, I wrote about our knock-down-drag-out battle with insurance on DoubleX, spoke about it on NPR, and testified about it before Congress. But my case is unusual—because there was a beginning, middle, and resolution to it, and because I was willing to complain at all.
There is a near pact of silence among those of us with major insurance company woes. People simply don’t speak out. That shyness hasn’t boded well for the Democrats who assumed that all people who hate their insurance would get out there in town halls and on the airwaves to champion health care reform. Instead, collective reticence, combined with the inability of the Democrats to harness the most compelling of our stories effectively, means that a question remains in the minds of a lot of Americans about why exactly we need a health care overhaul. That is making Obama’s job of selling reform that much more difficult as he heads into his address to Congress on Wednesday.
At the beginning of the summer, proponents of health care reform seemed to believe that this debate would be won or lost on rational policy positions, rather than political atmospherics. Advocates for reform outside the administration tell me Hill staffers and the White House didn’t much pursue or push personal “real life” tales like mine. They feared individual stories would be seen as individual problems, rather than a pattern calling out for a systemic solution. In other words, the Democrats got lost in the math game of the health care debate. As a result, they haven’t used personal narrative nearly enough, or nearly as well, as they might have. And that, as much as anything else, left them vulnerable to an attack from the other side based on mythical granny killings.
Part of the Democrats’ trouble might have been anticipated. A new study by Mark Schlesinger of Yale and Brian Elbel of New York University, appearing this month in the health policy journal Milbank Quarterly, finds that most consumers do not formally complain or quit their health plans, even when they have had big problems with their policies, ranging from unexpectedly paying more than $1,000 out of pocket to being declined for services. Almost no one even writes in to her health insurance company, let alone to state insurance commissioners, asking for a review of denied claims. Overall, the study found, barely 3 percent of people with major health insurance problems file a formal complaint with their insurance companies when their health plans screw them over. “The [insurance] industry is quick to say ‘90 percent of people are happy with their coverage,’ but this research shows that people are not satisfied. They just don’t complain,” says Karen Pollitz, project director at Georgetown University’s Health Policy Institute.
She is surely right that silence doesn’t equal happiness. In the wave of response to my article, I heard many more stories like mine or worse. (Until my piece ran, Care First Blue Cross Blue Shield denied coverage for the labor and delivery of my baby even though I’d purchased, in advance, a supplementary maternity package meant to pad our basic insurance with promised routine prenatal care and hospital services.) One woman who wrote to me got a bill for $20,000 after labor and delivery. (She offered to give the kid back.) Another woman was told her previous cesarean section meant she was eligible for a policy with $15,000 in deductibles or no maternity coverage at all. A man wrote in about how he’d been mugged and taken to the medical school side of a university hospital emergency room, making his care “out of network” for his health insurance company. He had to shell out $6,000; his insurance paid nothing.
Stories like these make the case for major healthcare reform, plainly and without fanfare or histrionics. Some of them showed up on DoubleX. And there are a smattering of others out there, like Robin Batin’s deeply affecting account, told at a congressional hearing and spotlighted on This American Life, of the perils of rescission—Batin lost the insurance she’d paid for just when she needed a double mastectomy for breast cancer, based on the specious claim that a previous dermatological visit for acne was a foreshadow of the cancer to come. But these public recountings of private healthcare debacles are surprisingly rare exceptions to the rule of silence. At one point, Democrats in Congress tried to use their own stories to illustrate the problem, but ran into trouble because their own blue-chip heath care plans hardly ever truly show health care gone awry.
When the Joint Economic Committee had me come up to the Hill to talk about my experience, there was hope my family and I would become poster children for Mommies and Babies Who Need Health Care. It didn’t happen. News outlets wanted more cataclysmic results—bankruptcy, eviction. Some wondered whether I could legitimately serve as a spokesperson for reform, since I’m a journalist. Many other women could serve in my stead as a poster child. Yet we still don’t have one.
The reaction to my insurance disclosures helps explain why a lot of people who suffer through healthcare crises don’t want to talk about it. Plenty of critics refused to believe that my story was anyone’s fault but my own. They wrote in to say how wrong I was to assume that insurance should cover me at all, since I’m a freelancer. “Grow up,” two critics wrote separately—if I had a job with employer-based health insurance, they said, none of this ever would have happened to me. Never mind that in attacking me, they were actually airing their own frustrations, as well as exposing the underlying problems with how our health insurance is doled out. From DoubleX commenter “Amy13”:
While I would have loved to be a full-time freelancer, I understood having a family means growing up and realizing you don't get to do everything the way you'd like, and spent a considerable amount of time and effort securing a position with a company that offers insurance. Furthermore, using your position as a journalist as a tool for blackmail is both unprofessional and reprehensible.
What’s amazing to me is that Amy13 isn’t expressing anger that she didn’t get to be a freelancer. Instead, she is angry with me for daring to think I could find my way around our country’s reliance on an increasingly frayed system of employer-based health coverage.
Other readers picked apart my story for the mistake they thought I must have made. Some accused me of trying to buy homeowners’ insurance after a fire was already burning. (They assumed I was already pregnant when I bought my insurance, though I was not.) Others felt that pregnancy was a “choice” and therefore should be paid for out of pocket. The criticism came from the left as well as the right, with readers chiding me for not using midwives or having a home birth. (For the record, I did use midwives, but after 36 hours they gently advised me that a C-section in the hospital was my only recourse.)
The vitriol is a window into how the Democrats have lost ground in the healthcare debate. It highlights how highly profitable insurance behemoths with armies of lobbyists are also being championed by people who might be wiser to see themselves as screwed by the companies they are protecting. Somehow, despite all the ghost stories told this summer, the personal narratives that tell a different, truer story aren’t being heard. And so my hope for Obama’s speech on Wednesday is that in his quiet, measured tones, he picks up a few of our stories and presents them back to America, as he has so well at other key moments. Let us be for him a mirror. One that reflects back everything the country has to lose, and has already lost, from health care as we know it.
Sarah Wildman has written on the intersection of culture and politics for the Guardian, the New York Times, and Slate; you can read more at www.sarahwildman.com
