Insurance Denials Feel Like a Death Sentence

Summary

Podcast Summary: "Insurance Denials Feel Like a Death Sentence"

Podcast Information

• Title: Uncared For
• Host: Soojin Pak (Lemonada Media)
• Episode: Insurance Denials Feel Like a Death Sentence
• Release Date: August 13, 2025

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Introduction

In this poignant episode of Uncared For, host Soojin Pak delves into the harrowing experiences of Kay Su, a breast cancer patient and advocate. Through Kay's story, the episode illuminates the critical failures within the U.S. healthcare system, particularly focusing on how insurance denials can jeopardize lives.

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Kay Su's Cancer Journey

Initial Diagnosis and Life Changes

Kay Su was in her mid-30s, thriving in her career at Instagram, and newly engaged when she faced an unexpected life-altering event. In January 2015, while walking to a cat cafe in New York City, Kay revealed to a colleague her plan to skip a gynecological appointment due to a conflicting work meeting. Encouraged by her colleague to prioritize her health, Kay attended the appointment, leading to a life-changing diagnosis.

• Quote (Kay Su, 02:14): "I'm going to skip this gynecological appointment... her encouragement saved my life because it was at that appointment two weeks later that I found out through a normal check that I had a big lump."

Shortly after her diagnosis, Kay was devastated to learn she had stage three breast cancer. Balancing her career and personal life became a steep uphill battle as she navigated the initial treatment phase.

Remission and False Hope

Following her successful initial treatment, Kay experienced a period without evidence of cancer, fostering a sense of hope and transformation. She adopted healthier lifestyles, including quitting drinking and altering her diet, believing she was on the path to recovery.

• Quote (Kay Su, 09:12): "That year that I had cancer, I felt like my life was transformed. I was given this other chance."

Recurrence and Stage Four Diagnosis

However, in 2018, during a routine scan, Kay discovered that her cancer had metastasized to her spine and bones. This devastating revelation marked her transition into stage four cancer.

• Quote (Kay Su, 10:22): "I was just shocked. I thought I put everything behind me. I was ready to move on."

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Battle with Insurance

Denial of PET Scans

As Kay embarked on aggressive immunotherapy treatments, she faced another significant hurdle: the denial of coverage for her necessary PET scans by her new insurance provider after changing jobs in early 2024. The insurer deemed her condition "stable" and medically unnecessary for further scans, despite medical advice to the contrary.

• Quote (Kay Su, 15:26): "They denied coverage... it just makes no medical sense, like, insane."

Appeals Process

Kay's attempts to appeal the denial were met with bureaucratic obstacles. Her oncologist's engagement with the insurer's medical director was insufficient to overturn the decision, and alternative options like chest CT scans were also rejected.

• Quote (Kay Su, 19:16): "It's horrific. It's a horrific process."

The appeals process proved to be an arduous and emotionally draining experience, highlighting the systemic barriers patients face when seeking necessary medical care.

Emotional Toll

The denial of coverage not only threatened Kay's health but also led to profound feelings of anger and helplessness. She expressed frustration over insurance companies prioritizing profits over lives, equating denials to sentences of death.

• Quote (Kay Su, 19:46): "Every denial to me feels like someone's telling you, nope, you're dying, you're going to die."

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Broader Healthcare System Failures

Impact on Patients

Kay's story is a stark representation of how insurance denials can have life-or-death consequences. The process is often impersonal and profit-driven, leaving patients with little recourse and immense stress.

• Quote (Kay Su, 20:59): "I'm dying from lack of access to healthcare that I have paid for and supposed to be there."

Systemic Profit-Driven Issues

The episode underscores the systemic issues within the U.S. healthcare system, where insurance companies and third-party reviewers prioritize cost-saving over patient care. This profit-driven approach exacerbates healthcare inequities and undermines trust in medical institutions.

• Quote (Kay Su, 23:02): "It's not just not covering a cavity, you know, or root canal. It meant that if you turn down one thing, you turn down everything."

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Advocacy and Call for Change

Kay's Advocacy Efforts

Faced with such systemic failures, Kay transformed her personal struggle into advocacy. She emphasizes the need for collective action and systemic overhaul to ensure that insurance companies fulfill their obligations to cover necessary medical treatments.

• Quote (Kay Su, 29:00): "We need to have conversations about what tomorrow looks like... we need collective action on this."

Collective Action Needed

Kay calls for increased accountability among elected officials and a unified effort to prioritize healthcare equity. She criticizes the lack of political will to address these systemic issues, urging listeners to hold policymakers accountable.

• Quote (Kay Su, 29:00): "Where are our elected officials? Very, very, very few elected officials talk about this."

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Personal Life and Resilience

Parenthood and Living with Cancer

Amidst her battle with cancer and insurance denials, Kay found profound purpose in motherhood. Her daughter, Freya, born via surrogate in 2021, became a central source of joy and motivation. Kay balances her advocacy with dedicated parenting, cherishing everyday moments with her daughter.

• Quote (Kay Su, 31:01): "It was one scan that made the difference between her getting sicker and even dying versus having more and more of these everyday moments with her family."

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Conclusion

In "Insurance Denials Feel Like a Death Sentence," Uncared For powerfully illustrates the life-threatening implications of insurance denials within the U.S. healthcare system. Through Kay Su's relentless fight, the episode highlights the urgent need for systemic reform to ensure that medical care serves the people, not profits. Kay's journey is a compelling call to action for collective advocacy and policy change to prevent others from facing similar ordeals.

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Notable Resources Mentioned:

• ProPublica's Claim File Helper: Assists patients in navigating insurance claim denials.
• Fight Health Insurance: Provides free tools for creating appeal documents.
• The Dose Podcast by the Commonwealth Fund: Focuses on health policy conversations.

Further Actions:

• Request Your Claim File: Understand why your insurance claim was denied.
• Learn About Appeals: Utilize available resources and AI tools to increase the chances of overturning denials.

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Closing Thought: As Kay Su poignantly states, "Insurance should work for us, not for higher profits." Her story is a testament to the resilience of patients navigating a flawed system and underscores the critical need for healthcare equity and reform.

Transcript

[Soojin Pak]

This show is presented by the Commonwealth Fund, a nonprofit foundation whose mission is to promote a high performing, equitable health care system. The Commonwealth Fund supports research to improve healthcare policy and practice and has a long history of exploring what the US can learn from the best healthcare around the world to do better here at home, especially for people of color, people with low income, and those who are uninsured. To learn more, visit commonwealthfund.org work Are.

[Kay Su]

You looking for ways to make your everyday life happier, healthier, more productive, and more creative? I'm Gretchen Rubin, the number one bestselling author of the Happiness Project, bringing you fresh insights and practical solutions in the Happier with Gretchen Rubin podcast. My co host and happiness guinea pig is my sister, Elizabeth Craft.

[Soojin Pak]

That's me, Elizabeth Craft, a TV writer.

[Kay Su]

And producer in Hollywood.

[Soojin Pak]

Join us as we explore ideas and.

[Kay Su]

Hacks about cultivating happiness and good habits. Check out Happier with Gretchen Rubin from Lemonada Media.

[Soojin Pak]

Lemonade Want to listen to your favorite Lemonada shows without the ads? Subscribe to Lemonada Premium on Apple podcasts for just 5.99. You'll get ad free episodes and exclusive bonus content from shows like this one, as well as Wiser Than Me with Julia Louis Dreyfus, Fail Better with David Duchovny, and so many more. It's a great way to support the work we do and treat yourself to a smoother, uninterrupted listening experience. Just head to any Lemonada show feed on Apple Podcasts and hit subscribe Make Life Suck Less with fewer ads with Lemonada Premium.

[Kay Su]

I remember walking with a colleague. It was in January and we were walking to a cat cafe.

[Soojin Pak]

In the winter of 2015, Kay Su was thriving. She was in her mid-30s, living in New York City and working at Instagram. On her way to the cat cafe that day, because it was 2015 after all, Kay confided in her colleague about a work dilemma. She had an upcoming doctor's appointment that conflicted with a big meeting.

[Kay Su]

And I said, hey, you know what? I'm gonna skip this gynecological appointment. And my colleague said, you know, my New Year resolution was to never give up my health anymore or doctor's appointments for work. And she's like, I'm going to encourage you to do the same. So I'm going to encourage you to actually go to that gynecological appointment. And thank God she did, because it was actually at that appointment two weeks later that I found out through normal check that I had a big lump.

[Soojin Pak]

Kay's doctor ordered some tests. Later, at a Work dinner. Her phone buzzed. The doctor was calling with the results.

[Kay Su]

It was confirmed that it was cancer. And then I just left dinner immediately. And I remember panicking in the taxi, like, oh, shit. Like, you know, I just got engaged to my husband. Is my life over? What does this mean? And just very, very frightened at that moment because no one I Knew, I was 35 at the time, no one I knew, like, had cancer. And so it was a lot of fear.

[Soojin Pak]

Something she couldn't have anticipated at that moment was that it wasn't just cancer she would have to face. It would also be a fight to get the care she needed to survive.

[Kay Su]

I'm not even dying from a disease. I'm dying from lack of access to.

[Soojin Pak]

Healthcare that I have paid for from La Nada Media. This is uncared for. I'm your host, Soojin Pak. Nearly one in five people, people have reported that either they or a family member have been denied coverage for a service their own doctor recommended. And roughly 6 in 10 adults say they experience problems using their health insurance. Something is fundamentally broken here. Maybe you're facing a cancer diagnosis like K or managing a chronic illness that needs ongoing care, or maybe you just need to get physical therapy for a nagging back injury. No matter how you interacted with the healthcare system, chances are you've run into some familiar frustrations. Unexpected bills in your mailbox, prior authorizations that delay the care you need, billing errors if you can catch them. And all of those minutes, no hours, stuck on hold with your insurance company. I've been there and so have most of us. Today's guest is Kay Su, a breast cancer patient and advocate who has fought her insurers for years, all while her life is literally on the line. Before she was an advocate, Kay was just trying to manage life following her diagnosis of stage three breast cancer. She was only 35, building her career and newly engaged. Cancer was not in her plan.

[Kay Su]

It was such a weird point in my life. I felt like I was finally getting somewhere in my career perhaps and finding my feet. I had met Tony, who's now my now husband online. I laugh all the time. People are like Tinder. I'm like, Tinder was not quite there yet. It was on OkCupid and people are like, so old fashioned. Like it wasn't back then. It was the hookup. It was the hookup site.

[Soojin Pak]

Oh, I remember.

[Kay Su]

So I just met him. We decided to get married because again, you know, we, we were older and we kind of knew what we wanted to do. When this came about, it Was very surprising. So I got formally diagnosed, I think, March 15th. We got married April 24th. And the intention was never, never actually to do it so quickly.

[Soojin Pak]

Kay and her husband's parents were flying into New York City to meet, so it seemed like the perfect time to get married. Kay and Tony went to city hall to seal the deal. As special as it was, Kay said the quick decision making was mainly driven by fear.

[Kay Su]

I knew that I was, like, stage, like, I don't know, 3B. I didn't quite understand what that meant back then. And so I thought, God, I'm going to die soon, and if I die soon, I want to get married. I also bought a house, by the way. Bought a house. I did all the things that people are not supposed to do. But I think in my head, my survival skill was like, if I do these things, I'm building a future for myself, and that means I'm not giving up.

[Soojin Pak]

I love that. I mean, that is. Wow. Like, I thought I was going to get one story, and then I got another. That's. That's crazy that you also bought a house in this. I. It just says so much about you and probably your husband as well, because it was both of you guys making these decisions in this time. But I also think it's. It's so beautiful buying a house, getting married. Kay was moving through life hoping for the best. But getting ready for cancer treatment meant there was another big life decision she needed to make.

[Kay Su]

I was called a young patient being under 40 and diagnosed with breast cancer. And so that was a particular challenge because there's a lot of challenges around fertility, around menopause. There's not a really good process, nor is there good infrastructure around helping people find the care that they need.

[Soojin Pak]

I had read in the research that you froze your eggs. Tell me kind of what your thinking was and what your feeling was around making these really big life decisions.

[Kay Su]

Had I gone to perhaps a doctor that was not experienced or not thinking around, like, a younger person's, like, life, I would have probably not have thought to freeze my eggs, because I didn't think I really even understood that chemo would have decimated my ovaries or reproductive organs. I also probably wouldn't have understood that being at the age 35 and having, again, if I was lucky at that time, because I got diagnosed at stage three or so, I think that I wouldn't have realized that the 10 years that it would have taken to regenerate my ovaries would have been sort of iffy for me to have kids? Should I have decided to?

[Soojin Pak]

Yeah. Chemo kills fast growing cells, which can damage ovaries and wipe out eggs along with the cancer. So when Kay talks about needing time to regenerate her ovaries, she means the recovery period it takes to cycle through the eggs. That her mortality, her fertility, these were big life considerations that were hitting Kay at a point in her life where things had been going really well. It was a lot to take in emotionally. So after your initial treatment, though, that was quite successful and you didn't have any evidence of cancer for a while, but then it returned a few years later. Can you kind of talk me through that chain of emotions and events?

[Kay Su]

I think I just tried to suppress it all. I had a bad time. It was not pleasant. I plowed through work. I got promoted. I did very well, actually. That year that I had cancer, I felt like my life was transformed. I was given this other chance. I quit drinking. I was pretty much a vegan, pretty much keto, based on some bad, bad research I did myself. And I thought I was on my way. And I would say probably by 2017, I thought, oh, scot free.

[Soojin Pak]

Yeah. How many years had it been from that time of sort of feeling like, okay, you've got this under control now.

[Kay Su]

Probably three and a half years.

[Soojin Pak]

Wow.

[Kay Su]

Yeah.

[Soojin Pak]

That's a long time. Yeah.

[Kay Su]

Yeah. I thought it was a little bit in my rearview mirror. My mom. My mom again, probably speaks to some generational stuff, said just forget it. Because I told her, like, oh, it's fading away. I barely remember this. And she goes, who cares? You know, why? Remember the bad stuff. Just keep on plowing forward. So I did. I put it aside. I kind of went back to my normal ways.

[Soojin Pak]

Kay said she started missing doctor's appointments after all, she was feeling fine. Eventually, she went in for a routine.

[Kay Su]

Scan in 2018, and they found out that the cancer had spread through my spine and also through my bones. And that was a shock. I was just shocked. I thought I put everything behind me. I was ready to move on. I didn't feel like.

[Soojin Pak]

And I assume you were feeling better and. Well, yep.

[Kay Su]

The whole time.

[Soojin Pak]

Yeah.

[Kay Su]

And I just. It just shocked me. And I think I got nervous because I had to ask the question. I'm like, am I now stage four? And then, you know, in common vernacular, stage four, you know, it is a terminal. It's considered terminal state. So I. I think I freaked out.

[Soojin Pak]

Kay wasted no time starting aggressive immunotherapy treatments to target the cancer. But processing her emotions came more slowly. It took time to work through her feelings about getting diagnosed again.

[Kay Su]

You feel a lot of self blame, like, was I given a second chance that I squandered? You know, did I do something to cause this? You know, did I. Is it because I started drinking again or because I loosened up, you know, over time? And so there was a lot of, I think, psychological duress and distress because I think at some point you feel it's not true, but you do feel like perhaps you had a lot to do with it, even though the reality is that there's so many factors, even if it's environmental, that it's very hard to say what caused it. And it is a luck of a draw.

[Soojin Pak]

Yeah.

[Kay Su]

On this one.

[Soojin Pak]

Sometimes I also think too, like, I grew up in an, in a very Korean household where anytime I cough, my mother would be like, ah, it's because you didn't wear a coat. You didn't. I told you yesterday you were, you shouldn't have slept with your hair wet.

[Kay Su]

And it's like, well, okay, you know.

[Soojin Pak]

But I think that that is a very natural reaction to feel like, oh, wow, like this. To take on that blame, especially when something feels so illogical in some ways you're like, wait, hold on. So then maybe the way that I can, you know, process this is to say, okay, well, it was me. I should have done this. And it feels like there's some control over it, even though there's so much, you know, powerlessness in that kind of thinking. So I understand that. Now living with stage four cancer, Kay faced a next level battle for her health and with her insurance company. That's next after the break. Let's be real. Without the black press, who's covering how black Americans are really treated in the health care system? Mainstream media barely scratches the surface, but Word in Black goes deep because lives depend on it. They're reporting the truth about medical racism, black maternity mortality, breast cancer in black women, mental health stigma, all of it. Want to stay informed and empowered? Subscribe to their weekly health newsletter and get the stories that actually put black health first. Go to wordinblack.com that's wordinblack.com and sign up, because being informed is how we protect each other. Want to listen to your favorite Lemonada shows without the ads? Subscribe to Lemonada Premium on Apple podcasts. You'll get ad free episodes and exclusive bonus content from shows like Wiser Than Me with Julia Louis Dreyfus, Fail Better with David Duchovny, the Sarah Silverman podcast, and so many more. It's a great way to support the work we do and treat yourself to a smoother, uninterrupted listening experience. Just head to any Lemonada show, feed on Apple Podcasts, and hit subscribe. Make life suck less with fewer ads with Lemonada Premium. So this was Kay's new reality. Cancer was now and forever a part of her life. Instead of eradicating it completely, her oncologist's new goal was to keep it at bay, eliminating the cancer where they could while tracking the ongoing spread of it throughout her body. Following her oncologist's recommendation, and because it's standard care for metastatic breast cancer patients, Kaye got regular PET scans. And let me tell you, these scans aren't cheap. Kaye's clinic charged between 5 to $6,000 per full body scan. Thankfully, Kaye's insurance company at the time was covering them. That all changed last year. At the start of 2024, Kay found a new job and got new insurance. She says they covered one of her routine PET scans, but when she planned to get a SECOND 1 In September 2024, they denied coverage.

[Kay Su]

And I was being denied basically on the premise that I was, quote, unquote, cured. And it's just irresponsible, but also makes no medical sense, like, insane. So, as with any denial, oncologist gets on the call with their medical director. She gets on a call, this guy identifies himself and they talk through it, and he says, well, she's stable, so there's no need for a PET scan. And my oncologist said, can I have your license number and your name? Because if I had cured her, then I have done God's work. She's like, I'm brilliant, but I'm not that smart.

[Soojin Pak]

Kay's oncologist offered a chest CT scan as an alternative. Her thinking was, maybe they would at least cover that. Chest CT scans can help determine if cancer has spread to some organs, but not as many as a PET scan. Like Kay said, the whole issue with stage 4 metastatic cancer is that it can reach parts of her body a CT scan might not show. But again, her insurance company said no, they wouldn't cover either scan. Even after Kay appealed the denials and her oncologist spoke to her insurer's medical director.

[Kay Su]

I was just very angry about it and very angry because I thought, this male doctor is going to kill a bunch of women during Breast Cancer Awareness Month if this is the kind of crap that he's going to pull just to save a pretty penny for the insurance company. Like, I think the Whole thing just like, made me realize how rotten the entire system was.

[Soojin Pak]

The truth is, insurance companies aren't always the ones even making these decisions. They often outsource medical reviews to other companies that literally make their money by rejecting doctors requests for coverage. And before I go on, let me quickly define some terms here. When doctors request coverage before you get treatment, like in Kay's case, that's called a prior authorization. If insurers refuse because they deem it medically unnecessary, that's a prior authorization denial. Even if it's a proved though, it's not actually a guarantee that the insurance company will pay for it. A claim denial, on the other hand, happens when you've already received treatment. Your doctor has submitted a bill that your insurer has decided they won't cover. So when a denial comes through, whether that's a prior authorization denial or a claim denial, it's natural to assume you can't do anything about it. But the truth is, you don't have to take no for an answer. You can appeal it. That's what Kay did. What is the appeals process like for the scan? Like, kind of talk me through that.

[Kay Su]

Yeah, I think typically an appeal comes down, you get a letter and maybe you'll get like an automated call, and then it's actually up to your oncologist and the medical director to talk about it. They come to conclusion. I think if it's. If the provider hasn't sent enough information to prove a bunch of stuff, it becomes a burd on also the provider to do all this work. And again, there's a lot of researchers on providers feeling overburdened by this administrative duty. So that happens. And then you also have, again, depending on state, a different way of appealing. You can appeal to the state consumer board for private insurance, especially New York, so you can actually go to Albany and appeal that. Or you can obviously hire a lawyer and sue private lawyer, in which case the state doesn't get involved.

[Soojin Pak]

If that sounds complicated, that's because it is. Your specific appeal process depends on what type of insurance plan you have and what state you live in. Lawmakers haven't forced insurers to follow one standard path.

[Kay Su]

It's horrific. It's a horrific, horrific process.

[Soojin Pak]

And it's a process that it's so powerless because it's all based on other people's decisions about your life. That's also like, so deeply inhumane.

[Kay Su]

Oh, my God.

[Soojin Pak]

You know, to have to give that up to strangers to figure out what's best for you.

[Kay Su]

Not only, you know, are you powerless about choices about your own health, but so is your provider. And all of a sudden it is a shareholder owned company that has all the keys to your ability to live. Like a denial is a denial for me to live is how I feel like when they denied me my medication, I was like, every denial to me feels like someone's telling you, nope, you're dying, you're going to die. And what's even worse is I'm not even dying from a disease. I'm dying from lack of access to health care that I have paid for and supposed to be there. So I think that's probably again where my indignation comes from. The hopelessness around feeling powerless is certainly one thing, but the indignation is like, but what I'm owed, this, I paid for it, this is owed to me. And this is nothing that I'm trying to get above and beyond. I just want the standard that everybody should get and I want what insurance was meant to be, which is supposed to be a safety net for all of us. So not having that just, it still makes me very angry that they have so much power over all of our lives.

[Soojin Pak]

Because her insurance refused to cover her scan after her appeals, Kay looked elsewhere for help. Her company's internal benefits manager. In mid October, she says her employer agreed to pay for her scans out of pocket.

[Kay Su]

It is the greatest privilege that I have, right time, right employer, that cared, right advocate on our benefits team who's done a tremendous amount to help me push this through. But it did get escalated all the way to the top, to headquarters to have them step in and advocate on my behalf.

[Soojin Pak]

Kay was finally able to get her PET scan. She booked it immediately, but nearly a month had passed from the initial denial to getting approved through her employer. A month of uncertainty and anxiety. The scan revealed shocking news. The cancer had metastasized to Kay's liver. She underwent two surgeries in December to remove it. According to Kay, her team of specialists told her flat out that without the scan, they wouldn't have caught the cancer in her liver. Remember, her insurance had deemed the scan medically unnecessary.

[Kay Su]

And you know, even since that moment, October of last year, I just, I just realized how many that have died because of these denials. And it breaks my heart. It breaks my heart. It's unnecessary. I cannot live in a world where money dictates your ability to live, like physically live. It is not right to me. It makes me angry. And on top of that, we all pay for insurance. We pay for insurance, we pay for a premium we pay CO insurance, the deductible, all this stuff, only to get denied when we ask for basic care, life saving care. Yeah, and that's not even. That's on top of like, what, what an employer pays in private insurance, and they're still denying care.

[Soojin Pak]

I mean, can you even calculate the number of hours you've spent trying to get either reimbursements or. Or the PET scan, anything related to what you feel like insurance should be covering on your behalf?

[Kay Su]

Yeah, I mean, it's endless. But it's not even that. It's not just not covering a cavity, you know, or root canal. It meant that if you turn down one thing, you turn down everything. I have no recourse. And that eventually, again, you know, I would die. And again, not because of the disease, but because I'm not getting the care I need.

[Soojin Pak]

So it isn't, you know, the hours are endless, the stakes are high. What is this like emotionally advocating for your own life? You're also trying to focus on being well.

[Kay Su]

No, I want to say something provocative, and this is certainly not every cancer patient's experience dealing with insurance has been worse than dealing with the cancer itself. Like, without a doubt, like the. I think because it spoke to me a little bit about humanity, or at least that's what I was taking from it. And what I do take from it is that we put money over people, and I think it illuminated how broken our healthcare system is and how much is failing so many people. When I see children who go without chemo because of this or they don't have coverage, I just. There's something in me that I just can't understand, that this is the reality that we accept when we come back.

[Soojin Pak]

How K is fighting to change the system not just for herself, but for. For her daughter's future, too.

[Kay Su]

Hello, I'm Joelle Brevel, medical mythbuster and host of the Dose, a health policy podcast from the Commonwealth Fund. Each season, I sit down with a leading health policy expert and medical professionals to have real conversations about the issues that keep them up at night. We talk about breakthroughs in their research and their new ideas to make our healthcare system work better for all Americans. This idea of equity needs to be taken up by everyone. And wherever you are in your work, whatever sector that you're in, we need to have conversations about what tomorrow looks like. I hope you'll check out the Dose and enjoy listening to our interviews. You can find us at thedose show or by searching your podcast app for the Dose from the Commonwealth Fund. Hi everyone, I'm David Duchovny. Join me on my podcast Fail Better, where we use failure as a lens to reflect on the past and analyze the current moment. I speak with makers and performers like Rob Lowe, Rose o' Donnell and Kenya Barris, as well as thinkers like Kara Swisher and Nate Silver, to understand how both personal setbacks and larger forces impact our world. Listen to Fail Better wherever you get your podcasts.

[Soojin Pak]

Back when Kay was first diagnosed, she had to make so many decisions and quickly. Treatment plans, getting married and freezing her eggs. It was a whirlwind. As the years went on, Kay learned to live with cancer. And by 2019, she started to allow herself to imagine a future by becoming a parent.

[Kay Su]

So you know, around in 2019, I said to Tony, well, we're not getting any younger so we should probably make this decision. I was actually erring on not having a kid. I thought like stage four, would that be responsible on my end, not knowing what the future held and do you bring a life in that you don't support? So I had that conversation with Tony and I said, if you have any more of a desire than I do, I'm open to it. But it certainly isn't something that I'm pushing for because we had, we have a beautiful life. He decided that he wanted to go for it, but it was a decision made with a lot of thought and care because, you know, I had to have the conversation with Tony, like I don't know what my future holds. Will you at some point be okay if you end up being a single father? And so we had to have that honest discussion because if he hadn't been, I would have, I think, pressed more heavily not to have gone for it. But we decided to do it.

[Soojin Pak]

Kay's daughter was born via surrogate in 2021. She named her Freya after her oncologist. When we chatted, Kay said that she hasn't shared her diagnosis with her kid yet. She's only four. Even so, living with cancer has affected the way she parents.

[Kay Su]

I will say that I probably am more present and more focused on making a lot of time like with her as much as I can. But I do hide it. And as public as I am about my diagnosis and my advocacy around insurance, I think once she's able to read a little bit more and get more access to computers, I might be more thought thoughtful about what I share externally because I don't want my daughter to have the burden of thinking that her parent is going to go away at any Point in time. So I do want to preserve a little bit of innocence around that, but it hasn't. I don't know if it would have changed my way of parenting other than I am very myopically focused on spending every weekend with her. It's. It's something that I focus on. And when people ask me if I have hobbies, I'm like, nope, I have cancer and a kid and work. And that's quite good enough. Yeah. Yeah.

[Soojin Pak]

What advice would you give to other cancer patients facing these insurance battles?

[Kay Su]

I don't. I don't even know if I have advice, because it's not. The burden should not be on us. I guess the only advice I have is the question of where are our elected officials? I do not understand. Where is our elected officials? As short of a few that I've seen, maybe Bernie Sanders, maybe Rep. Ro Khanna from California. Very, very, very few elected officials talk about this. And yet it is a situation that, that really, truly, deeply is a systemic failure and I think a systemic murder of people and of Americans. We're seeing our healthcare system fall apart because we've again put profits over people. So I hate to say that I don't have advice. I mean, the only advice I have to say is like, never give up. There's a lot of AI tools to help with the appeal process. Reach out to your network, reach out to cancer care. That's a not for profit that I work deeply with for many things. But there's a lot of resources out there. And don't give up is the only thing I could say. But that's sometimes not enough. I mean, short of telling people to move out of United States, there's very little the individual could do. And that's why I'm frustrated, is because I think we need collective action on this. So I think it's about all of us getting involved and deciding that we've had enough, but also to hold our elected officials way more accountable for what our healthcare system has become.

[Soojin Pak]

And I guess my last question, you know, I want to end it on something that hopefully brings all of us joy. You talked about how you have to, you know, well, one wonderful hobby, your daughter, and that your weekends and that your time with her is so present and focused. Give me a little snapshot of a weekend with Freya. And what, what does that look like for you? Like, what's like, the best, like, most fun, you know, weekend that you've had in recent memory?

[Kay Su]

The last weekend was a great one because I think a lot of the Fun is in everyday joy. She saw her first fireworks. She's never stayed up late enough to see that. For the fourth of July, we went to H Mart, which to most people is just a supermarket. To us, it's like an amusement park. So we took her and her friend to play with all the claw machines and spent $50 winning one Dinky little thing. Then we took them to the food court for udon. Then we took them shopping, and they could pick whatever snacks they wanted. And then they got kids cake at the cake shop. So, you know, that night on Sunday night, she said, mom, this was the best weekend of my life. And for me, it's. It's that because, you know, being through this cancer journey, I realized that life is not made in these, like, big, profound moments. It's actually in all these little moments. And just seeing that this kid who I never would have had, should I, had not having cancer, has made me profoundly grateful that this is the way things have turned out. And she is, without being cheesy, a genuine. It's a privilege for me to be a part of her life and to have her be sort of the legacy of my entire, like, journey through cancer is like, she is the goal, and she's the thing that. That has given me a lot of purpose because I want the world to be better for her. I don't want her, if she ever is ill or sick, to ever go through what I have to go through. And I want her and her friends to have a much better world. And I want to leave it in a much better place than how I've entered it.

[Soojin Pak]

It's such a good reminder. Life really isn't found in big, profound moments, like Kay said. For me, it's as simple as running errands with my daughter or watching my son's favorite movie again. It's everyday stuff like that. It's so easy to take it for granted, especially as they're getting older. But I know that time is precious. That's what was at stake for Kay. It was one scan that made the difference between her getting sicker and even dying versus having more and more of these everyday moments with her family. We know this issue is bigger than any one patient. It's a system that is, in some ways, working exactly as it's intended to. But confusing as it can be, getting informed on these issues can make a difference. I want to leave you with some advice about where to start when you face a denial. Request your claim file. That's all of the documentation you're insured put together to decide whether it would cover your medical services. You can learn why it was denied. Information you'll need to submit an appeal. ProPublica's online claim file helper can walk you through the process. Plus, like Kay mentioned, AI tools are making appeals easier, too. Fight Health Insurance is a free online resource for creating appeal documents to send to your insurer. The odds of winning your appeal are in your favor. On average, appeals have an over 80% rate of success. We'll link both resources in our show. Notes Getting the care you need covered shouldn't require superhuman knowledge about medical billing or a legal team ready to sue. Dealing with a health concern is taxing enough. And like Kay said, insurance should should work for us, not for higher profits. There's more Uncared for with Lemonada Premium if you haven't subscribed to Lemonada Premium yet, now's the perfect time. Because guess what? You can listen completely ad free. Plus you'll unlock exclusive bonus content like tips from health experts and caregivers that you won't hear anywhere else. Subscribe now on Apple Podcasts or head to lemonadapremium.com to subscribe on any other app or listen ad free on Amazon Music with your prime membership. That's lemonadapremium.com Uncared for is a production of Lemonada Media. I'm your host Soojin Pak Muna Danish is our senior producer. Lisa Fu and Hannah Boomershine are our producers. Our mix is by Ivan Kuraev, music is by Andrea. Kristin's daughter Jackie Danziger is our VP of partnerships and production executive. Producers are Jessica Cordova Kramer and Stephanie Whittles. Wax this season of Uncared for is presented by the Commonwealth Fund, a nonprofit foundation working toward a health care system where everyone, no matter who they are, where they live, or how much money they make, can get the health care they need. Help others find our show by leaving us a rating and writing a review. You can follow me on Instagram at sujinpak and Lemonada. Lemonada Media across all social platforms. Thanks so much for listening. See you next week. This show is presented by the Commonwealth Fund, a nonprofit foundation whose mission is to promote a high performing, equitable healthcare system. The Commonwealth Fund supports research to improve healthcare policy and practice and has a long history of exploring what the US can learn from the best healthcare around the world to do better here at home, especially for people of color, people with low income and those who are uninsured. To learn more, visit commonwealthfund.org it's easy to feel helpless these days.

[Kay Su]

So take a break from the bad.

[Soojin Pak]

News and hear from people who are.

[Kay Su]

Doing good things to address big problems.

[Soojin Pak]

We care about abortion access.

[Kay Su]

We care about slowing down, reversing climate change. That's the approach we need to these long term systemic problems. We need the fixers Feel empowered to take action.

[Soojin Pak]

Listen to good things from Lemonada Media, available wherever you get your podcasts.