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41% of adults in the U.S. have medical debt. Here are some ways to try to avoid it

ARI SHAPIRO, HOST:

Medical debt is a burden that 41% of adults in this country carry, according to a new poll from the Kaiser Family Foundation. Patients and consumer advocates say there are things people can do to try to avoid it. As part of our ongoing series with Kaiser Health News on medical debt in America, NPR's Yuki Noguchi reports.

YUKI NOGUCHI, BYLINE: Lori Mangum was 32 when tumors the size of apples sprouted on her head. Now, six years and 10 surgeries later, the skin cancer is gone, but her pain lives on in the form of medical debt. Even with insurance, Mangum paid $36,000. She still has bills, and not just from the hospital.

LORI MANGUM: I had a bill from the surgeon. I had a bill from the anesthesiologist.

NOGUCHI: Plus pharmacy and follow-up care. Mangum, who lives in Louisville, hated feeling helpless and bewildered as she tried to manage the cost.

MANGUM: I should be able to figure this out. I should be able to do this for myself. There's a pride piece in there. It's incredibly humbling, and sometimes even to the point of humiliating to feel like you have no idea what to do, and it's all you can do to just rest that day because you're in pain.

NOGUCHI: Now Mangum is chief operating officer for Gilda's Club Kentuckiana, a cancer support group she herself relied on. She dispenses advice to others, like scrutinize your bill.

MANGUM: Look through every single line item. It's not infrequent for something to be double billed.

NOGUCHI: She also tells them, try to bring your own over-the-counter medicines.

MANGUM: It's also your right to say, I don't want your Tylenol that they are going to, you know, list you for exorbitant amounts on your bill.

NOGUCHI: The U.S. health care and insurance system is pocked with debt traps. Some people fall in through gaps in insurance coverage. Many don't realize they can negotiate with hospitals on price or payment plans. And while most hospitals offer financial assistance, too few patients know such programs exist or that they could qualify, a problem the hospital industry admits it could improve.

The fear of all those costs keep many people from seeking care at all. Nicolas Cordova sees this every day. He's a legal aid lawyer at the New Mexico Center on Law and Poverty.

NICOLAS CORDOVA: It shouldn't be on the patients experiencing these medical issues to have to navigate through this complicated health care system.

NOGUCHI: Cordova says several states, including New Mexico, Colorado and Maryland, recently tightened consumer protections for medical debt. One of the most meaningful reforms, he says, involves the hospital's own financial assistance, or charity care. Some states now require hospitals to screen patients for eligibility without patients having to ask, and that can mean avoiding debt altogether. Programs vary by hospital but typically discount bills for patients earning up to two to three times the federal poverty level. Cordova says a big problem is patients aren't aware of charity care or are even discouraged from applying. So, he says...

CORDOVA: Don't take no for an answer right away. There is most likely help out there for you, but for whatever reason they might not be connecting you with that help right away.

NOGUCHI: Consumer advocates argue charity care should be safeguarding more working or low- to middle-income families from medical debt. That group is at high risk. They aren't poor enough to qualify for government assistance like Medicaid, so they often assume they aren't eligible for hospital charity care. But at the same time, these people cannot afford good insurance coverage. And because they have income, hospitals are also more likely to try to collect their debts.

That was John DeAnda's story. He happened to be doing cleanup work at a New Mexico hospital nine years ago when he stood up and fainted. Doctors tested him for four days, determined no problem, then handed him an $8,000 bill. No one recommended charity care. Interest rates doubled the original bill, despite him making payments. Only years later was he told he could have haggled over the initial bill.

JOHN DEANDA: I actually didn't know that you could negotiate. What I would have done differently is I would have talked with the hospital first to see if they could work out a deal with me.

NOGUCHI: Jared Walker says this happens often. Janitors, cashiers and teachers most in need of help are left to figure it out on their own. Walker, a former bartender, started a nonprofit called Dollar For in 2015 after helping family members manage medical debt. Now the group's sole focus is to help patients apply for charity care even after they've already incurred debt.

JARED WALKER: Charity care, in my opinion, is still something that, like, nobody has any idea what it is. And hospitals don't really tell people, and then they just make it extremely hard to access.

NOGUCHI: Working on behalf of patients, Dollar For's dozens of volunteers spend hours on the phone arguing with hospital administrators, bill collectors or lawyers, trying to get hospitals to forgive patients' bills in part or in full. It's not easy.

WALKER: I'd say, like, 95% of hospitals are still forcing patients to fax in their applications, which is just insane. Like, you know, who has a fax machine?

NOGUCHI: So far, Dollar For has wiped out $15 million in medical debt for over 500 people. At first, Walker says, just finding details of each hospital's charity care policy was a struggle. So Dollar For built a database of policies of hospitals around the country.

WALKER: A patient can now go to our website, put in their household size, their income, what hospital holds the debt, and it will tell them if they're eligible, according to that hospital's policy.

NOGUCHI: Ideally, he says, people will use the tool to identify the most generous program and avoid debt in the first place. That's Louisville skin cancer survivor Lori Mangum's mission as well. In three years, she says, she'll finally pay off her debt.

MANGUM: When it's done, we're going to have a bonfire of bills.

NOGUCHI: Even then, she says, trauma will still remain.

MANGUM: Because that mistrust that has built up in me is always in the background, saying, but don't get too comfortable. It may not be over. And then every month when I pay that bill, it just reaffirms, like, this is still a part of your life, and it might come back. And what if it's more expensive next time? How would you pay for it if it happened again?

NOGUCHI: Yuki Noguchi, NPR News. Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

Yuki Noguchi is a correspondent on the Science Desk based out of NPR's headquarters in Washington, D.C. She started covering consumer health in the midst of the pandemic, reporting on everything from vaccination and racial inequities in access to health, to cancer care, obesity and mental health.