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We sit down with Catherine L. Chen, an anesthesiologist and health services researcher. Join us as she shares her personal story of facing a Medicare Part B enrollment denial for her mother during a vacation in Hawaii. Catherine’s unique perspective as a physician-scientist unveils the complexities of the Medicare system and the emotional journey her family endured. Together, we explore the challenges of navigating Medicare, discuss potential improvements, and hear how Medicare coverage played a pivotal role in her mother’s recovery and return to an independent life.

Catherine L. Chen is a board-certified anesthesiologist and health services researcher with a primary research interest in optimizing the quality and value of care that patients receive during the perioperative period. She can be reached on X @DrChenMD.

She discusses the KevinMD article, “Medicare coverage saves lives. Enrolling shouldn’t be this complicated.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, get CME for this episode by clicking on the CME link in the show notes. Today we welcome Catherine L. Chen. She’s an anesthesiologist and health services researcher. Today’s KevinMD article is “Medicare coverage saves lives. Enrolling shouldn’t be this complicated.” Catherine, welcome to the show.

Catherine L. Chen: Thanks for having me, really a pleasure to be here.

Kevin Pho: So we’ll talk about your story and article in a little bit. First off, briefly share your story and journey.

Catherine L. Chen: Yeah, so I’m a physician anesthesiologist. I actually have kind of a non-traditional pathway to medicine, where after college, where I was an English major, I decided to go into finance, worked as an investment banker for a few years, and then saw the light, decided I wanted to help people on a daily basis, decided to go back to medical school at that time.

And then in medical school I was at Hopkins, I discovered the research bug, which is ironic because my dad is actually a physician researcher, and my entire life growing up I was like, I’m going to be a real doctor, I’m just going to take care of patients, I’m not going to do research. And he’d kind of joke around with me and say, just wait till you get through med school. So he was right.

I actually really enjoyed the intellectual challenge of being a researcher, asking interesting questions, trying to help improve health care. And the type of research that I do now is mostly related to improving efficiency and health care value with regards to delivery, specifically with regards to patients who are undergoing cataract surgery. Since it’s a very common procedure, Medicare pays for most of the cataracts that are done in this country, I spend a lot of my time thinking about the different aspects of cataract care.

Kevin Pho: All right, so in your story you talk about the difficulty of getting Medicare enrollment. It’s titled “Medicare coverage saves lives. Enrolling shouldn’t be this complicated.” So tell us this story.

Catherine L. Chen: Yeah, this was actually like an unexpected story, because my parents are US citizens, they lived here, my dad worked here for 20 years, and so they decided to move back to Korea after my youngest sister finished high school, went off to college. So my dad had a job opportunity in Korea, they moved back and lived overseas since 2001.

And interestingly, my mom was diagnosed with something called polycythemia vera probably a few years after they moved back, which was managed with medications, she was doing fine. And then in 2018 her disease progressed to something called myelodysplastic syndrome. So at the time that she was diagnosed they actually started talking about stem cell transplant as a treatment option, and my parents were not super excited about that because she still had a pretty decent quality of life. And so fortunately she responded to chemotherapy and they were able to stave off this decision for a few more years.

But then in late 2021 her disease ended up progressing to something called myelofibrosis, where your bone marrow no longer produces red blood cells. And so she needed transfusions every other week. She was really getting really weak and debilitated, her spleen got huge, splenomegaly, short of breath, she couldn’t eat. I as a physician kind of knew that this wasn’t sustainable long term, to get transfused every two weeks.

So again the doctors in Korea started talking about stem cell transplant. I think my mom was a little bit fearful about this, because in Korea apparently once you’re over 65 it’s not really something that the doctors recommend. I think health insurance there doesn’t cover stem cell transplants for older adults after 65, so it would have been an out-of-pocket expense for my parents.

And around the same time, my sister actually had a friend whose mother had a stem cell transplant at Stanford for the exact same disease, same disease progression, polycythemia to myelofibrosis. And so my mom was able to connect with this mother of my sister’s friend, and after talking to her, she was six years out from her stem cell transplant, doing amazing. This friend talked about all the benefits of having the transplant done at Stanford, had great follow-up after the acute phase in the hospital, and so she was just really grateful to the doctors at Stanford.

So I live in the Bay Area, I work at UCSF, and of course Stanford is our kind of counterpart down south, a little competition there. But given that they had a lot more experience with stem cell transplants and higher volumes, we decided that if possible we would try to get my mom in to be evaluated and see if she was even eligible. Again, given her age and how her disease had progressed, she had a bunch of mutations that were considered high risk for transplant, so it wasn’t even a slam dunk that she would be able to get the transplant. But myself and my sister in the Bay Area, my brother’s in Seattle, my parents decided that even if things didn’t work out, she actually wanted to see her kids and grandkids the last few months if this was going to be the end.

So the only thing that had to happen for this appointment at Stanford to work out is, she already had Medicare Part A and we just needed to get her enrolled in Part B. And of course it makes it sound really easy on the website when you look at the FAQ, and you’re supposed to submit the online application, it’s like 30 to 60 days to process, and once the benefits kick in then you can go on to get the Part D and the supplement plan. So it never occurred to me that this would be a complicated process, and so I naively just submitted the application last May and expected that by the time my mom was able to get to the US that she would hopefully have coverage before her first appointment.

Kevin Pho: So before you go on into your story, for those who aren’t familiar with Medicare, just tell us the differences between Part A and Part B.

Catherine L. Chen: Right, so Part A covers the inpatient care. So if you’re hospitalized, Part A covers almost all of the costs for when you’re acutely ill. Part B is mostly used for outpatient encounters, so visits to your doctor, lab tests, just anything that’s not requiring an inpatient admission.

So even though the stem cell transplant happens as an inpatient, there’s a lot of appointments that happen beforehand as well as afterwards, when you’re discharged from the hospital. And so if you don’t have Part B coverage and you’re expected to pay for that out of pocket, just to give some context, Stanford basically said, well, since you’re an international patient and you don’t have Part B yet, we know that you’re probably going to get it, but since you don’t have it yet, we’re estimating that this is going to cost about $500,000 out of pocket, if everything goes perfect, no complications, no hospital admissions, no ED visits.

So they asked my parents to actually deposit like 50 percent of that amount before they would even make that first appointment. And I didn’t think my parents could do it, I was like, OK, this is it. I was going through a big home renovation at the time, and my parents never said a peep about like, oh, do you need any financial assistance? So I told them this really, I thought, terrible news, and they’re like, OK, we’ll figure it out, I think we can manage to transfer 250,000. I was just like, OK. So that just gives you kind of the drop in the bucket of just the outpatient cost that they were estimating. And obviously these stem cell transplants cost probably over a million dollars when all is said and done.

Kevin Pho: So you wouldn’t be here talking to me if everything went as it should. So tell me what happened next.

Catherine L. Chen: So what happened next was, I submitted the Part B application, waited I thought pretty patiently for about 20 days, and then started calling the Social Security number, which is like their national help desk number. Spent hours listening to the hold music, and when I would get in touch with a representative they would say, oh, it’s still processing, it’s still processing. So it never occurred to me that it would possibly be a denial. I thought it was just going to take some time. There was at one point where when I called, they were like, oh, I’m not sure, I think there’s a pending decision on there, but I can’t give you more information. I was like, OK.

And then I was actually about to go on vacation to Hawaii. So the day before we left, my mom told me that she had gotten an email that said that she did not get her application approved, and so forwarded me the denial letter. And the denial letter basically said that she didn’t qualify for enrolling midyear because, so she was living overseas, she had health insurance overseas, but I guess the proof of health care coverage that we had attached did not meet their criteria of, I guess, a US-based employer.

In any case, the reasons that they listed in the letter were clearly incorrect, because the only reason she was eligible was because she was a person living overseas in a foreign country moving back to the US. And so at the time she applied for Part A when she turned 65, she was reassured that it would be a non-issue to get Part B anytime she decided to move back.

So this was again like a huge disappointment, huge surprise, a huge stressor. And my husband’s like, we’re still going to Hawaii, right? I’m like, yes, I guess we should take our vacation, but I’m like super stressed out.

So we get to Hawaii, I posted on Facebook just again in desperation, not knowing what else to do. It’s kind of a Hail Mary thing, because I thought we were at the end of the road, because again my mom was very sick at this time. And I consider her a friend now, but someone I didn’t know well who attended my church saw my posting, happened to be checking her Facebook probably like a few minutes after I posted, and started texting my cell phone number. And I had no idea who this person was, but they were saying, hey, you need to call the local Social Security office, here’s all this advice that I have from my experience doing this with my own mother.

And I’m like, texting this person who I don’t know who it is, like my sad story of, this is what’s happening with my mom. And then about 30 minutes later I’m like, and by the way, I’m really sorry, I don’t recognize your phone number, who is this? And she’s like, oh, it’s Joyce from church. And I’m like, oh my gosh, thank you so much.

So that was kind of like the first turning point in this story of desperation. Again, I’m still in Hawaii, my kids are at the pool, my husband’s like, are you going to join us? And I’m like, let me deal with this thing first.

So I start calling the local number, and then as I’m calling I’m also researching on the internet, trying to figure out what other options do we have. And so I happened upon the Social Security program operations manual, which happens to be public. They have all their definitions, all their eligibility criteria. And I was able to identify, here is the program operations manual number of the thing that makes it so that my mom is eligible for Medicare Part B enrollment midyear.

So the next time I called Social Security I read that verbatim to them, and they’re like, well ma’am, if you disagree with our decision you’re welcome to file an appeal. And I was like, OK, this is the information I needed. Because up until then they were basically insisting that the denial decision was final, we would have to wait for general enrollment in January 2023, which is six months later, and at which time my mom probably wouldn’t be alive.

Kevin Pho: So it goes without saying that you did a lot of the leg work yourself. You’re a physician, you’re a health services researcher, and you did so much research and leg work on your own on behalf of your mother. What does that say about people who do want to appeal these Medicare decisions and have to do it on their own?

Catherine L. Chen: Exactly. I mean, that’s what I was thinking as I was going through this entire process. What is this like for someone who’s a lay person, who may not have connections in the health system, who may not be familiar with Medicare data? Which I actually use Medicare data in my research, so I already knew about the different parts and what they meant and what benefits my mom would need to get.

On top of that, in addition to just overcoming the denials and persisting through that, because I think as physicians all of us are familiar with delayed gratification and going through a difficult training and not giving up at the first sign of frustration or challenge. I feel like, on behalf of America’s seniors, I know my mom could not have done this on her own.

And I think even if you don’t have a special situation like my mom moving back from overseas, I think it’s really confusing to figure out, do you need Part A, Part B, and then are you going to go with a supplement plan or are you going to go with a Medicare Advantage plan? Because there’s so many Advantage plans to choose from, you have to compare all the benefits, you have to compare how much do the drugs cost depending on which plan you’re getting, and this is talking about Part D now, right?

So some Medicare Advantage plans cover both the drugs and the additional care beyond Part A and B, but some Advantage plans have other benefits like dental, and so it makes it sound really appealing to patients. But one thing that I learned during this process is that if you sign up for Advantage instead of Part A and B plus a supplement plan, you actually are no longer eligible to get the supplement plan, if you ever decide to go back from Advantage to traditional Medicare. Because the only time you’re allowed to get guaranteed issue, which means they can’t deny you for pre-existing conditions, is that first six months right after you sign up for Part B.

So my mom was able to get the supplement plan even though it had been a few years after she got Part A, because she had just signed up for Part B. But if you’re going a year later, two years later you decide that you need to go back on traditional Medicare for things like stem cell transplant, I don’t know if Medicare Advantage would have covered as many of the costs for the stem cell transplant as traditional Medicare did, partly because my mom agreed to be a research subject and have long-term follow-up with regards to her care. But I think this is something people don’t realize until they make that decision, get the supplement plan denial, and then you’re paying for 20 percent of all the expenses from here on out.

Kevin Pho: So did Medicare reconsider this decision after your appeal?

Catherine L. Chen: So they may have reconsidered it at a slower pace than if I had reached out, if I had not reached out to Speaker Nancy Pelosi’s office. I don’t know what would have happened if her office did not intervene.

But again, I posted on Facebook, I got this text from someone from my church, and at the same time my sister-in-law was asking all of her network, and she’s not a physician, she works at Microsoft actually, but she was saying, a friend of mine said to reach out to your congressional representative. So of course I looked it up, and I should have known, but I didn’t know that it’s Speaker Pelosi. So I was like, all right, I’ve never interacted with Speaker Pelosi’s office before, but here goes nothing.

So on her website there’s also a form, if you’re having any difficulty with any federal agency you can request help from her staff. And so I wrote out the story, attached the copy of the appeal, attached all the evidence that my mom was eligible to get Medicare Part B coverage.

So this was in Hawaii, probably around like 4 or 5 in the afternoon, so maybe, I don’t know what the time translates to in San Francisco, but literally the next morning at 9:00 a.m. Hawaii time I get a phone call from Social Security, and they basically said, hey, we looked at the appeal, we’re so sorry, this was our mistake, we want to make this right, let’s make this appointment for your mom to come in and finalize this enrollment. But I was just like blown away at how quickly, I guess it’s when you’re a speaker, a former speaker, that you might have some clout with Social Security. And so that was really just a miracle. I actually had gone into this thinking that this was the end, that my mom was going to come to the US and spend her last few months with her family, but this was a total game changer.

Kevin Pho: You mentioned earlier that without Part B, Stanford requested a deposit equal to 50 percent, so that was like $250,000. So just for some context, with Part B, what is the out-of-pocket cost for that treatment?

Catherine L. Chen: So with Part B and the supplement plan, and my mom ended up getting the supplement plan with the highest premium, but then they basically cover all of the out of pocket costs. My mom has literally had to pay nothing except for the medication costs. Not that that’s not cheap, but compared to what it would have cost without Part B, without the supplement plan, I mean, it’s just night and day. I think it would have been financially impossible for my parents to move forward with the stem cell transplant if we had not gotten the coverage.

Kevin Pho: So as you reflect on this entire experience, tell us some of the main lessons that you’ve learned from this.

Catherine L. Chen: I think one of the big lessons is, I kind of took Medicare for granted, as a researcher but also knowing that in the US once you get to 65 you basically have universal health coverage if you worked in this country and are eligible. And it just never occurred to me that this wasn’t going to be a smooth sailing process.

Not even, even if you didn’t have these issues that my mom had of moving overseas or moving back from overseas, I think the comparing all the plans and all the options, there’s just like so many alphabetical letters that you have to read through. And the Advantage plans doing a lot of marketing to seniors and making it seem like Advantage is actually a really great cost-saving decision, right, because of a lot of the stuff that they cover. Yes, there’s like a low premium compared to traditional Medicare, but then when push comes to shove, sometimes there’s less flexibility and less choices that you have with an Advantage plan versus a traditional plan. But I don’t think I would have known that if I hadn’t done all this background reading.

So I think just for physicians who are listening, it’s actually not an easy decision. And I honestly feel like there needs to be, there are actually Medicare navigators out there, there’s phone numbers that you can call for assistance if you have questions. But even with those numbers, I actually reached out to our state, I think it’s called the SHIP program, where you can reach out if you have questions or need help navigating Medicare. I literally called and left multiple messages there. I think it’s probably because it was not open enrollment at the moment, I don’t think they staff it quite as well as during the fall. But I actually never got a hold of a live person. So even if there are these resources on paper, on the internet, to actually connect with someone who can help you is actually very challenging.

Kevin Pho: We’re talking to Catherine L. Chen. She’s an anesthesiologist and health services researcher. Today’s KevinMD article is “Medicare coverage saves lives. Enrolling shouldn’t be this complicated.” Catherine, let’s end with some of your take-home messages that you’d like to leave with the KevinMD audience.

Catherine L. Chen: I would say if you’re facing a situation like this where you’re running through some red tape, I think for me the real take-home message is, your congressional representative is there to help you. We all pay taxes, most of us don’t really ever encounter situations where you need to reach out, but not to forget that they’re there to help you navigate some of these federal bureaucracy and red tape challenges that you might encounter. So if all does not go well, that at least you have that in your back pocket when dealing with Social Security and Medicare.

Kevin Pho: Catherine, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Catherine L. Chen: Thank you, and I hope the audience benefits from our experience and doesn’t have to go through the same stress and heartache that I had to go through during this.