All health care reporters deal with the medical system outside of work. But not many of them have dealt with it like Alexandra Glorioso has in recent months. Glorioso is a reporter for Politico. She’s based in Tallahassee, Fla., and she writes about health care, insurance, and the state legislature. She covers stories like the push to expand Medicaid in Florida and legislative proposals to rein in drug costs. Last summer, at age 31, Glorioso was diagnosed with stage 2 breast cancer. She underwent chemotherapy, participated in a clinical trial with an experimental drug, and had surgery. Then, in March, she announced she was in remission, with no evidence of disease. This week, Glorioso talked with STAT about what the whole experience has been like — and how it shaped her thinking as a health care reporter. How are you doing and what kind of treatment are you currently undergoing? It has been a really weird experience, actually, entering remission, because I thought my life would get easier after that. But it didn’t. I am still getting treated. I am almost done with radiation; that’s standard care, and I’ll have 34 treatments total. I had stage 2, locally advanced, cancer. So my cancer had spread to my lymph nodes, and I got a lumpectomy. With chemo and a clinical trial drug, the six tumors in my left breast all went away. I had one large tumor, like 4.5 centimeters by 2.5 centimeters, in my lymph nodes, and that shrunk by about half. “It’s just changed the way I understand health care.” - ALXANDRA GLORIOSO You wrote a personal essay right after your diagnosis titled “I’m coping with cancer by reporting on it.” Can you explain to us what you meant by that? I felt like the only way that I could maintain some kind of semblance of control while I was going through this really surreal and out-of-body experience — a cancer diagnosis totally out of left field — was reporting on what was happening to me. And that’s why I ended up writing an essay about it because I had been reporting on it. In January, you tweeted about a really frustrating situation you were experiencing that is familiar to many cancer patients. You wrote that Moffitt Cancer Center — where you were receiving your treatment — was trying to cancel your MRI ahead of surgery because your insurance company wouldn’t approve it. Give us the story about what happened. That was a pretty crazy experience. My personal and my professional really collided that day because I was really frustrated. Like every patient ever, I get a regular stream of insurance denials on my tests. And typically I go through the rigamarole of getting my doctor to call and all that. In this case, my doctor or somebody from his office called about an important MRI I needed right before my surgery. That was a test that they needed to know where to perform surgery on my breast and my armpit to take out the tumor. It was a critical test. And, for some reason, they still denied it. I was just so mad, I called Moffitt to try and talk to them about it, to try and figure out how much my out-of-pocket costs would be. And I was sent around to all these different departments and then finally to a fax machine, and just hung up. So I literally couldn’t find out how much I would have to pay for the test. And because I couldn’t know whether I could pay for the test, they wouldn’t schedule me for the MRI. So I was not going to get this test I needed. And I was just furious and frustrated. And I just started tweeting about it because that’s second nature to me as a reporter. Were you able to get that situation resolved? A longtime lobbyist in Tallahassee, who I don’t even know but who follows me on Twitter — I tweet often about cancer and also health care topics that I’m writing about — he knew the founder of Moffitt Cancer Center, H. Lee Moffitt, and called him. And Moffitt ended up putting his personal executive team onto my case, and they ended up negotiating it out with my insurance company and resolved the entire thing within a matter of days. So I went from having literally no access to anybody in the billing department at Moffitt to having the founder’s personal assistants working on the case for me. Obviously, that was not what I intended to happen. This lobbyist told me to call him, and he had to send me his number because I don’t even know him. I just thanked him for it, hung up, and called my boss. I had to tell my boss about it because it could appear like a conflict of interest. How do you navigate these two roles? You’re a patient, you’re undergoing treatment. You’re also a reporter, you have a relatively high profile, and like a lot of reporters, you probably have a long list of contacts that ordinary patients don’t necessarily have. Is that a difficult challenge for you? Oh, yeah. Aside from just dealing with the administrative nightmare that is cancer, dealing with the ethical hula hoops is also, I think, the worst part about having it. But also kind of interesting. I think it really has opened up my mind to different avenues of reporting because just having to be a patient is such a time suck and also just such an emotional suck. And you really start to understand what that’s like. It’s case by case. “Aside from just dealing with the administrative nightmare that is cancer, dealing with the ethical hula hoops is also, I think, the worst part … but also kind of interesting.” - ALEXANDRA GLORIOSO I am working on a story now that I can’t really talk about, because I am still trying to figure out whether I should or can report on it. It involves a group that I’m actually getting treated by; something that’s come up in my world of reporting. I’m getting treated by several groups, so you wouldn’t really be able to identify them based on that information. But it’s kind of mind-blowing how often they overlap. Each time, I just bring it up to the chain of command at Politico, starting with my editor, and we talk it through and decide. Do you feel like since your diagnosis, it’s affected the kind of stories that you’re interested in pursuing as a health care reporter — or the way that you go about reporting them? I definitely think it’s making me a better reporter. It’s just changed the way I understand health care. I hate to say it, but I was a 31-year-old kid in a way. I never had a serious illness. I never had to deal with hospitals in a meaningful way. I never had to feel skeptical of my physicians. I just didn’t have that burden. And so I treated health care like a political reporter and a legislative reporter. And I would write about the gamesmanship and the deals that hospitals would cut to get money in the budget and the politicians involved. All of that is important reporting. But I think that my reporting is going to start becoming more dimensional. One recent example is that I have gotten really interested in Medicare fraud and anti-kickback laws and the incentives hospitals and doctors have to really conspire against patients and make their lives harder. I don’t think I would have appreciated why those stories were really important until I became a patient. You’ve opened up your Twitter direct messages so that you can exchange tips and have conversations with other cancer patients. What’s that been like, from your vantage point as a reporter? That has been maybe the most fulfilling thing about having cancer. I’m kind of a private person — ironically — since I’m really out there with this cancer thing. But I think that I do that, frankly, because I’m a writer and I like to control the message, probably, and the narrative. So I just write about having it. And it probably helps me cope with it. I didn’t really have to talk to patients a lot before because I write for Politico and we write for insiders. But I do talk to patients all the time now and it is just fascinating how many people have cancer — and how young they are. And there is a whole network of patients on the internet who are sharing information with each other that they gather from all their different treatment providers because it’s hard to manage. And that is just an amazing thing that people are self-assembling to do. And I’m so grateful that I’ve discovered this network. It’s really helped me as a patient. And it’s an amazing resource as a reporter. What is next for you in terms of your own treatment plans? After I finish radiation, I’ll start a new clinical trial. The goal with this clinical trial will be to basically lower the chance of my recurrence, and I’ll be on that for three years. And then I’ll do hormone therapy for another few years, and hopefully end in time to have a baby. And what’s next for you in terms of your health policy coverage? In terms of writing, I started to just try to develop a new set of skills as a reporter. I want to write more about health care fraud. I’m probably going to be doing more essays. I think that I need to start figuring out who are the patients who don’t have health coverage and what their lives are like. Because what I’ve come to realize — and while I should have really known this as a health care reporter, I didn’t really intuitively understand it — if you don’t have health insurance, you really don’t have any access to health care. There are nearly half a million people in Florida who don’t have access to health care insurance. I’m going to start exploring how to report on what their lives are like — and who they are. This is a lightly edited transcript from a recent episode of STAT’s biotech podcast, “The Readout LOUD.” Source
