I'd never heard of "logistic toxicity" until last year, when I met Shelley Fuld Nasso at a conference. She leads the National Coalition for Cancer Survivorship (NCCS), a non-profit group that advocates for policies to improve the lives of people affected by cancer. We were chatting about non-medical problems that patients face, such as financial hardship from medical bills.
“And then there’s the logistic toxicity," she mentioned. “It's a thing.”
Nasso detailed an experience she had after her son was evaluated in an emergency room. A few months earlier, she’d moved from Dallas to the DC area. Although she gave the family’s new insurance card to the Maryland hospital near their new home, the bills went to her former insurer. “I provided my Cigna card. But for some reason they billed it to United Health Care under my previous employer,” Nasso said. “Some of the bills ended up in collections, because I didn’t want to pay what I didn’t owe. The whole thing was a mess. It took months to straighten it out.”
“It was definitely a headache,” Nasso said. “But I can’t complain too much. This was just one quick ER visit,” she considered. “For someone with cancer, if they’re getting separate bills from separate providers over a long period of time, that would be much worse.”
“Some people going through cancer treatment put all their bills in a grocery bag or a box, because they can’t deal with it,” Nasso said. “It’s just too much, on top of everything else they’re going through.”
Logistic toxicity might be defined as the administrative burden of healthcare. Chores – like processing medical bills, holding on the phone for providers, filling out and submitting paperwork to insurers – can chew at a healthy person’s time, causing annoyance. For someone who’s chronically ill, these tasks and additional, long-term responsibilities – coordinating frequent medical appointments, and arranging for time off at work, and for childcare or caregiving of another adult – compound the physical and financial toll of disease.
The potential failure to take care of everyday tasks can lead to feelings of defeat or helplessness, besides exhaustion. Logistic toxicity affects caregivers, too. Consider the parent of a child in an intensive care unit for weeks, coming home after yet another evening at the hospital, after a long day of work, to a stack of incomprehensible bills and EOBs, and not even being able to call or challenge the charges, because it’s after-hours.
“The concept of ‘logistic toxicity’ makes a great deal of sense,” said Dr. Yousuf Zafar in a phone interview. He is a medical oncologist who specializes in cancers of the gastrointestinal tract at Duke University’s School of Medicine in Durham, NC. His research explores how costs of cancer care affect patients’ experiences and outcomes.
“Cost is one problem, but by no means is that the only challenge,” he said. “Like ‘financial toxicity,’ it influences patients’ well-being, time at work and leisure.”
The concept of logistic toxicity is new, Zafar confirmed. It goes unmeasured. “But it’s real,” he said. “If you consider all the forms, the administrative burden is tremendous. Billing errors, or problems with coding, result in hundreds and thousands of dollars in costs that are avoidable,” he added.
“Patients struggle with this all the time,” Zafar said. “One common example I’ve seen is that patients miss appointments due to errors,” he said. In another instance, a minor mistake on a patient’s disability form led to additional paperwork, and months of delay for needed assistance.
“I really believe that it’s more than the administrative burden,” Zafar said. “Cancer patients have to interact with and navigate multiple providers, organizations, and systems,” he said. “Our healthcare system is not simple, nor is it singular.” Having to navigate the system, as a whole, raises a host of challenges for patients with cancer and other chronic illness, he suggested.
This problem goes unaddressed for most patients, Zafar said. It affects people who have cancer, and also those with other chronic illness. “For patients who receive multidisciplinary care, the logistic problems are likely larger.”
“I don’t think that patients talk to their providers about it unless they’re prompted.” There are parallels with financial toxicity, he considered. Patients may not mention problems with insurance and paperwork because they’re embarrassed, or they don’t think it’s their provider’s job, or they don’t think there is a solution, Zafar said.
“Patients just see it as something else they have to deal with,” Zafar said. “They just accept it as a problem without a solution.”
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Susan Hamson is a 55 year old woman who lives with metastatic breast cancer in New York City and blogs at the Sarcastic Boob. Until recently, she worked as a curator and archivist in a university library.
“With cancer, this monster takes hold of you, and you let things go. If you try to be responsible, things fall though,” Hamson said. Everyday tasks, like paying bills and getting groceries, can be hard to manage if you live alone and there’s no one to assist you, she said. “Just having someone to remind you to take care of your responsibilities can help. Otherwise, things slip.”
“It’s no laughing matter,” Hamson said. “There were months that went by that I didn’t pay my rent, and I didn’t notice it because I was so caught up in the physical condition,” she said.
“When you’re thinking about cancer, especially stage 4, certain things just get pushed to the side. I’m a type A person. But even if you try to be responsible, as I did, and manage everything, things fall though,” Hamson said. “It’s got to happen to a lot of people.”
“My credit rating has taken a hit in recent year. But it’s not cancer, so I’m really not worried about it,” Hamson said “What I’ve got is going to kill me. A bill isn’t going to kill me.”
Lately, Hamson is on the administrative mend. “I’m paying my rent. I’m paying my bills. Now I do things like auto-pay, so I don’t have to think about it,” she said. “Thank goodness, in New York City, you can have most things delivered. I have Fresh Direct for my produce. Cat litter and cat food are delivered from Wag.com.”
Things could be worse, Hamson considered. “My insurance is good. My care at Mount Sinai Hospital has been nothing short of wonderful.”
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“It’s hard because you can’t trust the bills,” Nasso said. The statements from providers and insurance companies are confusing and not always correct. “You have to double-check everything,” she said. “It takes a huge amount of time,” she added.
“I’m concerned about the burden the health care system places on people with cancer,” Nasso said. "A cancer diagnosis is overwhelming enough, without having to add the myriad of logistical difficulties of coordinating with insurance and with multiple providers who don’t talk to each other. Patients have to be able to advocate for themselves, but that’s a lot to ask of someone who is going through treatment.”
"Woman on the phone" by Bill Branson (Photographer); photo from the National Cancer Institute, NIH... [+]
