Eosinophilic esophagitis (EoE) is triggered by food and in this interview, Colette Romero, whose son has the disease, discusses the financial implications for families, including equity considerations.
Colette Romero, whose son has eosinophilic esophagitis, discusses the effect that the disease has had on her family financially as well as the impact on health equity.
How does eosinophilic esophagitis (EoE) affect families financially, and how does this come into play when considering issues of health equity?
It definitely has impacted us a lot. Financially, you know, the cost of the inpatient feeding program was $60,000. We have been denied by insurance companies for his hypoallergenic shakes, which are extremely expensive.
And luckily, I'm a trained advocate, I'm a social worker, a licensed clinical social worker. So, I have those skills to be able to do my own research. And I was able to understand what the federal laws are around supplemental nutrition and able to talk to the insurance companies directly and say, "you know, my son needs this for his health, or else he's going to have to get a feeding tube, which is very invasive, and expensive, and ultimately expensive for insurance, as well." So, that's a big cost.
And everything we do, I mean, just groceries alone, are extremely expensive. I have to buy special items, like a loaf of bread for him is $7 versus $2 for the rest of us. I have to get him his own pizza, if we ever go out for pizza, and that's $20, just for him. With traveling, you know, we always have to get a place that has—it's either a house or a hotel with like a kitchenette, because we have to be able to prepare some kind of foods, because we can't eat out. Or else, you know, when we do, there's always the risk of an allergic reaction or an eosinophilic flare up, which makes him very uncomfortable and sick and not want to eat. So the costs are pretty intense.
And there's absolutely an equity issue that goes into that for folks who don't have the resources. And who don't have the time to be able to kind of pursue all of these opportunities and avenues and also just keep, you know, pushing the doctors to find out what's going on. And that's something that I knew I needed to do, because I knew there was something wrong. And I'm glad I did, because we were able to get to the root cause of it. But there's absolutely an issue with financial stress involved in this disease.