Coverage Uncertainty and Cancer Diagnosis: Insights from Dr. Mark Schlesinger

“We all know if we've gone through a serious illness or had that in our family or with our loved ones that health insurance is a contract that promises to pay for medical expenses, but it doesn't pay for all medical expenses. It promises to pay for those that the insurance company deems to be medically necessary. What happens is a lot of people discover if they have a serious illness like cancer that not all the things they or their doctor think are medically necessary are deemed that by the insurance firm.”  

"Out of the 1,300 people surveyed [from a representative population from the National Opinion Research Corporation (NORC)], we asked them about their interactions with their health insurance, and people told us that before they began the search for the cancer diagnosis that about a third of them didn't exactly trust their health insurance. That is, they worried about what it would cover, they'd experienced in the previous year some unexpected medical expense, and so they went into the cancer diagnosis being just a little doubtful about what it would mean for their financial well-being.”  

“People who start into the diagnostic experience [uncertain] are much more likely to report diagnostic delays, and much more likely to report timing of diagnosis that takes a longer period of time than people who went into it being more sure and comfortable with their insurance coverage. More specifically, in households that have no coverage uncertainty going into the cancer diagnosis, about 30% report a diagnostic delay. In households that reported coverage uncertainty before the search for the cancer diagnosis, about 60% reported a diagnostic delay. ... if you don't trust your insurance, you're going to put things off even longer, because if you don't have to run up a bill, it would be all the better, and so people wait until they're absolutely certain they really need this consultation with a doctor before they go, and that just adds time.”  

“Perceiving that you had a delay had all kinds of subsequent sequalae or consequences. When people go through a cancer experience, and they feel like they have not had a delayed diagnosis, about 10% report that something in that experience caused them to lose trust in the healthcare system. For people who reported a delay, about 40% lose trust as part, so four times the loss of trust, equally big increments in terms of emotional harms being reported. Cancer is scary. There will always be hard emotions, even when things go quickly. And even when outcomes are good. But having a delayed diagnosis significantly increased those emotional harms. Even a perception of delay matters.”  

“We have to help people both feel and have health insurance that is more reliable for them, so they don't have these doubts because having doubts in and of itself disrupts the diagnostic process. And for the group of people who have their cancer journey kind of initiated by their own recognition of symptoms, of course, one of the things we see over and over again is people will say, oh, I should have gotten into the doctor sooner. I didn't know, I wasn't sure, I put it off, because a lot of the symptoms that are being reported, even in the cases of long delay, are kind of undifferentiated, feeling fatigued, feeling pain. So, it's just not clear exactly what's going on. It's easy to say, maybe I'll feel better next month, and it's easy to put it off, and so you have a lot of people, kind of. Regretting their own initiation of care taking too long. Of course, on top of that, if you don't trust your insurance, you're going to put things off even longer, because if you don't have to run up a bill, it would be all the better, and so people wait until they're absolutely certain they really need this consultation with a doctor before they go, and that just adds time.”