Joelle Craft was diagnosed with multiple sclerosis when she was 16. Now 37 and a mother of three, Craft has to get an MRI every year in order to get treated by a neurologist.
MRI's run from $8,000 to more than $50,000, and Craft doesn't work (she's on disability, but she has health insurance through her husband's employer). The piling up of bills and the constant calls from debt collectors add to Craft's stress, which exacerbates her symptoms—numbness, fatigue, phantom "creepy crawlies" all over her body, trouble with thinking and verbalizing—and make her feel sicker. The nine-inch lesion running down Craft's upper spinal cord that showed up two years ago won't go away.
So Craft makes a lot of dark jokes. "My friend who comes to all my MS doctor meetings—because you have to have someone that has a brain come to those—goes, 'Is she gonna die? Like her throat close up or something?' And the doctor goes, 'No, no, no, she'll only have cognitive problems.'" Craft pauses to emphasize that last part. "Only. Right."
As a result of Craft's mounting medical bills, totaling between $8,000 and $10,000 from various hospitals, she and her husband were also facing foreclosure. Trying to avoid becoming homeless, they filed for bankruptcy a couple of years ago. Little did Craft know that she could have received financial assistance through charity care.
Washington state law dictates that every hospital has to provide charity care. Charity care enables patients who make up to 100 percent of the federal poverty line to receive free health care. Patients above the federal poverty line can receive discounted care, too, on a sliding scale. Charity care can be critical for people making just above the Medicaid cutoff. The Affordable Care Act stipulates that nonprofit hospitals have a special obligation to check if low-income people qualify for charity care before billing them at full price.
But Craft says she was never told about charity care. "I would have qualified and I told them I needed help and they just said I could be put on a payment plan. They never mentioned charity care to me. I never heard of it until I met with Washington CAN regarding the foreclosure crisis."
Yesterday afternoon, Craft stood with members of the Washington Community Action Network (Washington CAN), a consumer advocacy group, to rally outside of Swedish Hospital's First Hill campus. Xochitl Maykovich, an organizer with Washington CAN, explained that they weren't going inside the premises because the last time the group went inside and tried to pass out fliers advertising the hospital's charity care program, they received a cease-and-desist letter the next day. Andy Consentino, vice president of the Swedish Neuroscience Institute, later explained to Capitol Hill Seattle Blog that Washington CAN's actions were "aggressive" and "a burden to our patients and our caregivers."
"Swedish-Providence likes to hide behind this nonprofit status, but there are many people in the community who are struggling with medical debt, and they don't advertise the existence of charity care," Maykovich said. "And then the people who do find out about it face complicated applications with a ridiculous amount of documentation and a two-week deadline, which, if you're recovering from some open-heart surgery, the likelihood of you organizing your entire financial history in a pretty package in two weeks is pretty small."
Craft said she applied for charity care at Swedish a couple months ago after receiving a bill and was denied. She then received a letter from Swedish's billing department reminding her of her bill and appealed it, but was told that that department didn't handle charity care and would call her back with more information. That was a week ago, however, and Craft said she hasn't heard anything back from them. She wondered if they would call her back in time to make the hospital's two-week deadline to file for charity care.
Mary Beth Lowell, a spokesperson for the hospital, said that working with Craft shouldn't be a problem within the two-week timeframe. But regarding the larger protest, "It is frustrating for us to hear Washington CAN’s complaints," Lowell wrote in an e-mail. "Swedish is a nonprofit and we take seriously our responsibility to provide access to the services, expertise and facilities needed by our communities. We believe everyone should have access to healthcare."
Lowell added that Swedish has "historically provided more community benefit than any other non-taxpayer supported hospital in Seattle." Last year, Swedish invested $133 million in community benefit, which includes charity care, uncompensated care (or "bad debt"), research, and community education programs. Lowell also said that all patient registration staff have brochures on financial assistance and charity care. They're available in person and online in 10 languages. Swedish's charity care expenditures totaled $20.56 million last year.
Nonprofit hospitals' investments in community benefit, including charity care, have long been the subject of policy debate. Nonprofit hospitals qualify for tax exemptions and can fundraise on their nonprofit status, but community benefit investments vary widely. A recent study published in peer-reviewed journal Health Affairs showed that in California, for-profit hospitals on average spend slightly more of their operating budgets on charity care than nonprofits.
Washington CAN has criticized Swedish for decreasing its charity care spending between 2013 and 2014, but Swedish defended the decrease as a natural (and good) byproduct of Medicaid expansion. Last year, the hospital served 27 percent more Medicaid patients than in 2013. The decrease in hospital charity spending is a pattern that is being seen across the state—with less uninsured people walking through hospital doors, hospitals say they don't have to provide as much.
But even though Medicaid expansion means more low-income people are now insured, those same patients often face higher deductibles. Aaron Katz, a health policy expert at the University of Washington's School of Public Health, thinks those patients should be able to receive charity care, too.
"[Higher deductibles] could be a barrier to care unless the hospital or a doctor is willing to cut them a break," Katz says. "It's certainly an issue we should be paying attention to."
It's troubling, too, that the country's staggering medical debt problem has persisted even after health care reform. Debt collectors retrieved $21 billion from medical debt in 2012, and in 2013, the percentage of money collected from medical debt made up about as much as student and credit card debt combined. This year, Mayor Ed Murray's Housing Affordability and Livability Agenda report cited medical debt as a leading cause of foreclosure.
For Craft, medical debt is part of a vicious cycle of stress and illness at the same time that many hospitals' bottom lines have improved. "The way that they're making money off my disease, that's the biggest thing," she says.