How to report on the ‘financial toxicity’ even Medicare cancer patients can face Date: 05/11/21
By Kate Yandell
A recent Cancer Today magazine feature I wrote on the financial difficulties faced by many Medicare beneficiaries with cancer, Learning Medicare’s ABCDs, began its life in 2018 as a failed idea for a brief web explainer.
When I started as an editor at Cancer Today, I tended to think of financial toxicity as the province of people under 65 who were not eligible for Medicare. However, the median age for a cancer diagnosis is 66, and by early 2018, I had noticed in the literature and social media exchanges that some cancer patients on Medicare also were reporting financial troubles. I recall one post that left an impression in the Facebook group by Kaiser Health News reporter Liz Szabo began called Treating Cancer: Hope v. Hype. A report from the Kaiser Family Foundation on rising out-of-pocket health expenses for those on Medicare also caught my eye, as did a JAMA Oncology paper the year before that specifically addressed expenditures by Medicare beneficiaries with cancer.
I thought I would write a brief article for our website based on a patient interview, explaining the financial potholes one could run into as a Medicare beneficiary. Easy, right? I had misplaced confidence based on quickly coming up to speed on private insurance and cancer issues since I had significant family and personal experience navigating the private insurance marketplace.
Unfortunately, it turned out that the private insurance system had done little to prepare me to understand Medicare. So I interviewed the authors of the reports I’d read and learned a lot about how people with traditional Medicare can get into financial trouble if they lack supplemental coverage.
I then talked to a patient who seemed to have an entirely different problem: He was paying more than $13,000 a year out of pocket for an oral drug, and I had no idea why this was happening.
I realized that more reporting was needed before I could publish something that wouldn’t just confuse people further. I also realized that many people with cancer on Medicare were just as confused as I was. Therefore, a larger story than I’d initially intended could be beneficial. So at one of our regular brainstorming meetings, I (apparently convincingly) pitched a magazine feature on Medicare and cancer.
Of course, features for quarterly magazines are planned far in advance. My story found a slot in fall 2020. Since there was support among legislators for fixing the problem of high out-of-pocket costs for oral prescription drugs, I wondered if by the time this feature would be published that part of the problem would be solved. In 2019, there was some movement toward enacting legislation to cap out-of-pocket spending on prescription drugs, but as the coronavirus began to spread, legislative attention became focused elsewhere.
In May and June 2020, while still reporting and editing articles on COVID-19 and virtual meetings, I was happy to readdress Medicare finally. I reviewed the literature and found new patient and expert sources to interview. I also was grateful that my original expert and patient sources for the story were willing to be interviewed again to provide updates on the situation. I don’t usually take multiple years from idea to execution on stories, but reporting a story I’d already done significant work on ended up being quite enjoyable. This was also a relatively easy story to report when it came to finding willing sources, as experts on this fairly narrow topic and patients who had fallen into Medicare’s gaps were passionate about explaining misconceptions.
My advice is that it’s often the stories that we find most challenging initially that turn out to be most helpful to others. As a fellow confused person, the chances are that you are the right person to try to explain the topic to others. It can also be fulfilling as a reporter to venture into a new area. Before working for Cancer Today, I had been a freelancer mainly focused on reporting on biology research, and I thought this chapter in my career would be mainly filled with stories on cancer genetics and immunotherapies. But some of the work I’ve been most passionate about has involved the inner workings of the U.S. health care system rather than the inner workings of cells.
Another rewarding aspect of this story was working with my colleague Bradley Jones to create an explanatory video based on the story. Although I do not consider myself a visual artist, I had the surprising experience of having a scrawled drawing I made of the structure of Medicare turned into a graphic for the story by our design team.
The reaction from readers of the story — primarily delivered via Facebook comments — has largely echoed what I found in my reporting. For some cancer patients on Medicare, the road is relatively smooth. Others report being blindsided by high costs, often due to needing costly oral drugs or lacking helpful supplemental insurance. The most gratifying comment? A reader said it was the first thing she’d read about Medicare she had understood.
Kate Yandell (@KateYandell) is digital editor of Cancer Today, a magazine published by the American Association for Cancer Research for people who have been diagnosed with cancer.