From the start of our show, we’ve asked listeners to share stories about navigating the American health care system. Today, David talks with those of you who have had to fight for health care in order to manage chronic illnesses, secure gender-affirming surgeries, and help children receive developmental therapies for Down Syndrome.
Resources from the episode:
- Planned Parenthood transgender identity terms and labels: https://www.plannedparenthood.org/learn/gender-identity/transgender/transgender-identity-terms-and-labels
- GLAAD transgender glossary of terms: https://www.glaad.org/reference/transgender
- JAMA article on the association between gender-affirming surgery and mental health: https://jamanetwork.com/journals/jamasurgery/article-abstract/2779429
- National Down Syndrome Society resources for finding support: https://www.ndss.org/lifespan/finding-support/
- National Down Syndrome Congress local and national support networks: https://www.ndsccenter.org/programs-resources/affiliate-organizations/local-and-national-support-networks/
- American College of Obstetricians and Gynecologists endometriosis resources: https://www.acog.org/womens-health/faqs/endometriosis
- Johns Hopkins Crohn’s resources: https://www.hopkinsmedicine.org/gastroenterology_hepatology/diseases_conditions/faqs/crohns_disease.html
- Cancer Care breast cancer resources: https://www.cancercare.org/diagnosis/breast_cancer
Keep up with David on twitter @CHIDavidSmith.
Share your feedback! Email us at firstname.lastname@example.org or leave us a voicemail at 833-453-6662.
Support for this episode of The Cost of Care comes from Healthline.com, America’s leading digital health brand. Visit healthline.com/costofcare now, and stay connected by following @healthline on Instagram, Facebook and Twitter. Healthline: Powering healthy actions and supporting you on your journey to well-being.
Support for this podcast comes from The Commonwealth Fund, a health care research foundation working to improve the U.S. health system. Visit commonwealthfund.org/costofcare, and stay connected by following us on Twitter, LinkedIn, and Instagram. Commonwealth Fund: Affordable, quality health care. For everyone.
You can click this link for a full list of current sponsors and discount codes for this show and all Lemonada shows.
To follow along with a transcript and/or take notes for friends and family, go to https://lemonadamedia.com/show/thecostofcare/ shortly after the air date.
Stay up to date with us on Twitter, Facebook, and Instagram at @LemonadaMedia.
Mike, Kris Garcia, Elizabeth Noriega, Jackie, Aurora Kay, Joshua Dudley, David Smith, Anya
David Smith 00:00
Hey listeners, the COST OF CARE is a 10-part series. We think it’ll make more sense if you start from episode one. So, go back start there and we’ll be here when you’re ready.
I asked the surgeon, I asked the oncologist you know, I had this pain I have, you know, the swelling is it lymphedema? And I only knew that word because of the Facebook group. Nobody had ever told me. Nobody ever said you know; you need to watch out for this that can happen because they removed two of your lymph nodes.
nodes. That’s Anya. She’s a 49-year-old breast cancer survivor from Florida who left us a voicemail. She had been experiencing some pain in her arms after cancer treatment, which raise some red flags.
And I was like, this hurts and it seems like it might be […] it’s just radiation swelling, it’s just surgical swelling. The radiation oncologist told me it was just from the radiation, the surgeon told me oh, it’s just from the surgery, it’ll go down.
The symptoms lined up pretty closely with a condition called lymphedema that she’d seen others post about and a breast cancer support group on Facebook. Lymphedema is a swelling that can happen in the arms and legs after the removal of lymph nodes during cancer treatment.
Finally, like I had a chord pop out in my armpit, which is the lymphatic fluid like kind of congeals into a cord and I was like, I have […] can somebody do something about this and finally demanded that they refer me to the only lymphedema specialist in the area. He said, well, I’ll send you over to her, but I think she’s only going to need to see you one time.
But even after the doctors continued skepticism, Anya remained committed to finding answers.
Two times a week for the next five months I was seeing her and I still have to treat it carefully. I still have to wear compression sleeves sometimes, sometimes I get frozen shoulder I have to go back to see her. But if it wasn’t for the internet and other women who had breast cancer, I wouldn’t have even known what lymphedema was, I would have believed them. Oh, it’s just surgical swelling. Oh, it’s just the way things are. You’re just gonna be in pain. Your hands are just gonna swell up sometimes, it’s just from the surgery. Nobody told me what was happening to me except other women on the internet who’d been there.
David Smith 02:20
So in last week’s episode, we talked about where people go to get answers to their healthcare questions, in Anya’s case, she had a Facebook support group of women who could explain the ABCs of post cancer treatment, including things like lymphedema. Building these communities is crucial when it comes to navigating the complexities of the healthcare system. That’s why we’ve been asking you all to get in touch and share your stories with us. Today, we’ll be speaking with listeners like Anya who have had to take matters into their own hands, fighting a system that’s rigged against them advocating for the care they know they deserve, and sharing what they’ve learned along the way. This is the COST OF CARE. I’m your host, David Smith.
We start off with Kris Garcia. Kris is 45. He lives in Colorado and identifies as a trans man. We got to know him through Venice Haynes and the voices of real-life storytelling project that we talked about last week. For Kris, giving, the care he needs isn’t just about his physical health, it’s about his very identity.
I started to try my transition back when I was 20. So before it was, you know, very, very even socially acceptable, not that it’s completely socially acceptable right now. But definitely back then was a lot more difficult. So back then you had to do like five years of like, mental health care. And even then there was still a lot of like gatekeeping.
David Smith 04:08
On top of all that, life have other plans for Khris back then. So his transition was put on hold. But things have changed a lot for him in the last few years.
And so I started the process, again, of going through my transition. And I mean, I will say this experience has been a lot different than my first one, but I feel like there’s still gatekeeping going on, and there’s gatekeeping going on still in the medical field.
Kris explained that a few years ago, he had tested high for the breast cancer gene and had looked into a mastectomy as a preventive measure. In this context, the medical establishment didn’t bat an eye. But as soon as they became aware of Kris’s desire to transition, things changed.
All of a sudden when I started my transition, it was no longer on the table. All of a sudden now I needed two letters of recommendation for me to go through this process. And I’m like, Well wait, like, literally two years ago, you guys were talking to me about this option that I had, you know, if I was uncomfortable, or if I was scared of possibly having cancer, it was gonna be fine. You weren’t asking me for letters of recommendation, you weren’t asking me, you know, to go have a psychological evaluation. All of a sudden, testosterone showed up on my medical records. And it was a different set of circumstances, all of a sudden, I was now having to jump through hoops and prove that this was something that I really wanted, or, you know, something that that I was making an informed decision about. And it’s like, wait, like, what happened? Why is it different now than literally two years ago?
What do you think the top two or three most common gates are with the health system in pursuing a transition?
Kris Garcia 06:12
So there’s still the notion that you have to get these letters, like, let’s say, you, yourself, know that you want this transition. Now you have to find a mental health care provider, connect with them. And depending on, you know, who you’re going through, each medical provider wants to have their set number of sessions before they’ll write a letter of evaluation for you.
The letters are often required by both medical providers and the insurance companies. And as we’ve talked about several times, already, this season, things can get complicated pretty quickly when patients are caught in the medical industrial complex tug of war.
And so sometimes you might have access to one, but then you’re on a waiting list for you know, months on end, waiting for the other to catch up. Like with COVID, for example, my surgeries got pushed back. And your letters are only valid for a year. So then I have to go back and get another letter, so that it’s certified under the one year, and I’m eligible again.
And the letters that are required for you to seek out and get it, what are they trying to learn that you’re of sound mind that you’re making this decision? Thoughtfully? What are they trying to prove?
It’s kind of weird that you would have to actually have that conversation with somebody that’s like, yes, this is how I feel. This is how I’ve always felt, this is how I’ve seen myself. It’s just always trying to make somebody else and convince somebody else that yes, you are the way you are. Yes, you feel this way. Yes, this is what you need to feel complete. But it’s weird having to have somebody validate how you feel. It’s like, it’s the weirdest thing for me. It’s like I usually tell people, I usually tell people, it’s like people are like, Kris, how would you describe yourself? And I’m like, I’m just Kris. It’s like, I don’t feel like I need to describe myself in any other way. It’s like, so and I have these conversations with like the therapists and everybody, it’s like, well, how do you see yourself? I’m just Kris like, this is who I am.
David Smith 08:31
Kris is currently considering going for bottom surgery and has had vastly different experiences at two of the medical providers in his area. at Denver health, he says he tried to go through the proper channels and was met with months of silence. Ultimately, he was left waiting for them to determine if he was a quote unquote, good candidate. He then reached out to the University of Colorado’s health center where they have a dedicated transgender program among other LGBTQ oriented services, and there, it was a different story.
Within four hours, I had two of my appointments, you know, set up, and I now have consultations. But why is there the disparity in care? I mean, literally, these two hospitals are within about nine miles of each other. But it seems like everybody is on a different tangent of where we’re at. And that’s the problem is that when there’s no set standard, everybody can make up their own roles. So it’s like, it makes it hard to even know where to start. When it seems like there’s different starting points, depending on what organization you’re with, or where you’re looking to start your care at. And that’s only just that that’s not even starting to deal with insurance that’s not even starting to deal with doctors. And it’s an uphill battle because it’s like you don’t know what curve you’re gonna get, like thrown at you, and why? It’s like you’re just kind of always having to react, and try and figure out what’s the next step.
David Smith 10:11
And let’s be clear here. This is not just a trans care thing, like this kind of disparity is seen in all types of care. No matter the problem or procedure, nothing is standardized. Your experience completely depends on factors like where you live, which provider you see and what insurance you have. And it just so happens to be particularly egregious when you’re simultaneously battling social stigma and gender norms. On top of all of those other unknowns. Despite the challenges, Kris has been able to jump through the hoops and receive the transition care he needs, one of the reasons he’s been successful is because he’s had to seek care for his co-morbidities from a young age.
The only reason I feel like I’m lucky that I’ve been able to navigate the system is because I’m a hemophiliac, I’ve been dealing with insurance. And I’ve been dealing with the medical system since I was really young. I was 15, when I started navigating the system, mostly by myself, and really having to advocate for my care. So I think like, that’s been really helpful for me. But I think about how many people don’t have those skills. I say, like, quote, unquote, skills, to be able to navigate those systems to continue to fight to get the care that you need.
And because he’s found himself uniquely qualified to navigate the system, Kris has tried his best to pass that knowledge on to those in his community.
I signed up to be a mentor here, for others that are starting their journey or wanting to go through the journey. You know, and I share my experiences. So like, for me, like I share my experience so that others can know what I went through. If they have questions. I’ve told people it’s like, asked me, I’m an open book. It’s like, you know, whatever you want to know in my journey, ask away. In the end though, it’s like I look at pictures of me, like now versus even me 5 years ago. And you can tell like, my I’m so much happier, you know, it’s like, to me, it’s worth it. You know, if it gives somebody else that ray of hope that there is something on the other side, like, yeah, you can definitely do it.
David Smith 12:34
Here’s what’s really important to recognize about this. Kris didn’t just wake up one day and decide to transition. He’s been thinking about this for over half of his life. And by the way, the positive impact on Kris’ mental health has the research to back it up. It’s been proven that gender affirming surgeries like Kris’ actually do work wonders for a person’s overall mental health and well-being. They could lead to lower suicide risk, substance use depression and anxiety. And like Kris said, it’s slowly becoming more socially acceptable to exist in our society as a trans person. But for so long, these healthcare gatekeepers have been the arbiters of what kind of life a trans person gets to live in our country. And changing that mentality is going to take a lot more time and effort. When we come back, we’ll hear about the length one mother has gone to advocate for her daughter’s care.
I live in a small town, and I’m a stay-at-home mom. I’m originally from Peru. And I have a wonderful family and husband and three kids that I adore so much. It’s my entire world.
David Smith 14:00
That’s Elizabeth Noriega, and I got to talk with her about her youngest daughter, Janella, who just turned 7. We asked Elizabeth to rewind back to the day when Janella was born.
My pregnancy was totally normal. Like my other two, Janella was my Cinco de Mayo girl. So we got into the hospital, everything was normal. Everything was happy. You know, your third kid, he was my last one. And the third day when we were ready to leave the hospital, actually was when our pediatrician came and she asked me I clearly remember she asked me that if I consider that Janella has down syndrome. And my face, my mouth open like what?
The doctors conducted a test to determine the likelihood of down syndrome.
One week later, we get the result and definitely while we went to had an appointment with our generic doctor, and she confirmed that Janella had the extra chromosome that was diagnosed for down syndrome. And my world turned upside down. I was devastated. I was surprised. I thought my world just ended right there. And I remember getting to the office to the doctor. She looked at me with that beautiful face my doctor say, I know, I wish I can tell you something different. But you guys can get through this. And that was the beginning of my journey, my family’s journey. And she was right. Everything is perfect. It’s forward seven years until now. If you met my daughter, it’s that light is a sunshine.
David Smith 16:03
What was going through your head? What were some of your biggest fears about what that meant for you and your family in the future?
I don’t know in that moment, it’s just gonna be okay. She’s gonna be as normal as everyone else. My focus was is she gonna be okay? Is she healthy? But I didn’t know. I never had interaction with any one with down syndrome. Really, I never had interaction with any one with special needs. So that’s when my world was like upside down.
What are the challenges and joys of raising a child with down syndrome?
I mean, it wasn’t easy. But it was so rewarding to be her mom. When little, she was a baby like everyone else any other baby. She took a little slower to fulfill some milestones. But it was amazing because I did not experience those with my other kids. Those milestones like you first walk or just grab a spoon. Or she can just grab with her hands a little goldfish and put in her mouth. They just our kids. Our typical kids do that just birthday their own in and we don’t pay attention, but with Janella, my life stop and going slow motion watching her do every single milestone by her own, that I was like so surprised she did that. Oh my god celebrate. She took a little bit long time to crawl, to stand up, to walk, to run. But she did it.
To help Janella reach those milestones and make sure that she continues to reach more as she gets older. She receives several different developmental therapies. Tell me a little bit about Janella’s care and the types of care the types of services she needs on a weekly basis on a monthly basis and what does that look like over the last few years?
Elizabeth Noriega 18:13
Yes, I knew early on that Janella will need a lot of care. So we start with physical therapy and checking or her vaccines, the regular routine for babies. When Janella turn around probably nine months we start with speech therapy. The speech therapy needs to work in her mouth. So on nine months we have speech therapy plus physical therapy probably 12 months and 13 months we had occupational therapy. So what added to everything it was more like a plain time with toys. And basically she grew with those three therapists during her first three years. At the beginning she knew that at some point in time when she was three. But now as seven years old, she knows when she needs to go to therapy. She said mommy, I’m going to therapy say yes, you want to therapy.
As Janella got older, Elizabeth started enrolling her and several other forms of therapy. There’s aquatic therapy, musical therapy and hypnotherapy which is a form of physical and mental therapy involving horseback riding. And between all these therapies plus the ones Janella started when she was younger. Elizabeth has had to become an expert on which are covered by private insurance, Medicaid or neither. What did the insurance cover for you? What did insurance not cover? How much of that therapy did you guys have to pay out of pocket? Walk me through some of the ugly parenting stuff that went along with all of that therapy?
Elizabeth Noriega 20:10
Yeah, yes, definitely, Janella it’s in the waiver call, CCC plus, some Medicaid was cover all her therapies, physical therapy, speech therapy and occupational therapy. What is not covered by Medicaid was hippotherapy and music therapy, and the aquatic therapy. It’s something that we have to pay out of pocket.
their family has private insurance through Kaiser, but there’s a gap between what Janella needs and what’s covered.
Kaiser will the program or the plan that we have, they will see Janella probably for two, three or five sessions for the year. But it’s Janella I need to have probably those therapies every two times a week for his entire life. So if Janella didn’t have the CCC plus waiver probably will have to pay out of pocket because Kaiser only have certain amount of therapy that they do. So for us to be able to Medicaid, pick up the difference, Kaiser they have to deny it, and then Medicaid covered the rest.
What’s so frustrating is that all of these therapies are crucial for Janella’s development. But because only some of them have been deemed medically necessary, Elizabeth is forced to pay out of pocket for them. A financial privilege she has but many others don’t. Even still, Elizabeth has to spend hours and hours seeking out and coordinating generis care. It’s basically a part time job. The necessity of all of Janella’s treatment became profoundly evident over the past year during the pandemic, like most of us, she can still distinctly remember how she felt when the world shut down.
Elizabeth Noriega 22:17
In that moment I didn’t think about, oh, what about Janella’s therapy. We used to go a place here in Lauren county that she’s been going since probably two years old. This place accepts Medicaid and have her occupational therapy and speech therapy. It was been there for years, for years, probably twice a week, every week, it was her second home. Janella, she knows where we’re going. She knows the people. And obviously everything close. Fast forward two months, three months, we start to do some kind of telehealth with some of the therapists and then the place closed down, it close after 50 years in business, it closed. I didn’t know where to go. It was our place for the last four years and now, Janella didn’t therapy.
Elizabeth looked for another office where Janella could attend speech and occupational therapy, but not in their area accepted Medicaid.
So we probably didn’t have Janella didn’t have therapy for good seven month. No speech […]. And that was something that that’s affected a lot because it was a routine. She needs to have that as a constantly routine. And we didn’t have it. She heard therapy used to work a lot in her handwriting. It was hard for her to pick up a pen and just make a line and without the therapist. I’m not a professional I can show her okay Janella pick up the pen and write or draw a line but it was hard I don’t have the tools and without having in person therapy was hard for her. She did not learn during this time how to write because of that her speech general start going like backwards talking fast and clearly understand what she’s saying and try to myself okay Janella let’s do speak slowly. Try to pronounce correctly you words. And yeah, it was like that. I was scared that all the progress that we made through those years. It’s going to be backwards in seven months.
Here’s the thing. Elizabeth says experience navigating an environment with no treatment options during COVID matches the everyday reality of many parents of children with special needs, especially when their social factors stacked against them in one way or another. So Elizabeth made it her mission to tell other parents in her community, all that she’d learned about Medicaid waivers and other available services.
As much as all these programs that are out there, it is very complicated to find it, it is very complicated to understand. And that’s what we tried to come up with words that are easy to understand ways that are easy to apply. And our Latino community, it’s very hard, every day, they’re afraid, t the language barrier, it’s, it’s the first things that probably stopped them for looking for help. And it is hard. But you have to have somebody around you to tell you, as parents with special needs our life, it’s VC is crazy. Through the day, we have therapies we need to go to, plus school and more therapies. So sometimes we don’t stop, and we don’t stop and think about, oh, it is something out there that can help me know it just keep going you keep going in try to help your kid. And they don’t have the time to stop and look for program or apply. So that’s the hard part for many of us.
David Smith 26:45
Ultimately, this access to affordable treatment is so crucial, because as we’ve said over and over again on the show, health decisions reverberate throughout our lives. And that is especially true for children with developmental disabilities.
Imagine what it will be like for this kids, without any therapy, without any […] I cannot thank you enough. All the therapies through the seven years Janella had that make her who she is right now. And to be able for her to continue to be as independent as a person as a young adult. And be instead to be a burden in the society teaches invest right now as a little one and work here to be able to work when she turns 18, she can go and have a job, she can go work instead to live with the help of the government. That’s what my goal is.
What do you believe Janella is capable of doing in her life like play it fast forward 10 years, 20 years? Like what would you want to see as a mother?
Elizabeth Noriega 28:03
Oh, gosh, I dream these to be a self-advocate, to go outside and tell them everything that everybody said about down syndrome is wrong. That they can’t do that she can do. And she’s showed the world that if you invest in kids early on, they will be able to do anything, the sky will the limit. I want her to acknowledge her diagnosis. I want her to be a support for other kids with down syndrome. I want her to be a hope for new moms who are beginning on the journey and tell them that don’t worry, I know you worry about your child right now and look at me. Your child can be like me. I know why you worry because my mom worried the same. I just want her to be herself and do whatever she wants. Embrace her disability.
And as much as these therapies have transformed, Janella. Janella has profoundly transformed Elizabeth.
I didn’t know seven years ago that will be my mission. My daughter’s my mission. My vision. I found my passion. I found a fighter that I had in me. I didn’t know that exist. I see my daughter. I see that this is the reason that God gave me Janella for me to open my heart, to be able to be in the moment now to be able to interact with kids with special needs and be help and be hope for their parents. Because our every single parent with special needs will tell you, we became advocate, we became a fighter. Because we want the best for our kids. We became a supporter, we can support other parents, because probably you just start the journey, but we a little ahead, and we can tell you that everything is going to be okay. It is hard, but it’s gonna be okay.
David Smith 30:24
So I’ll be honest, I got choked up several times during my conversation with Elizabeth, it was so clear that Janella will have a life where she’s able to reach different heights, and touch the world in different ways. Because of the therapy she had at a young age, and her mother’s commitment to navigating the system on her behalf. Meanwhile, after decades of inaccessibility, Kris has finally been given a chance to become the person that he always knew he was. Both Chris and Janella are fighting for treatments that are essential to their basic humanity. But in the eyes of the medical industrial complex, some of this care isn’t deemed medically necessary. And it’s this kind of gatekeeping the creates a gap between the care patients know they need and what they have access to. And the only way to fight back is to raise your voice. After the break, we’ll hear from a few more listeners from across the country and even one from across the pond.
Hi, my name is Mike, I am a new nurse. I’ve been a nurse for a year. And after a year of working on a surgical step-down unit where I the patient ratio six to one I’ve just reinforced every day about how totally screwed up our healthcare system is. And I love being with my patients and helping them the way I can. But it’s excruciating, because we’re just doing things to patient. And it seems so sad. It’s so clear that it is centered on just billing people as much as possible.
David Smith 32:19
What Mike is saying here is something I keep trying to get across. The system is full of so many people who care deeply about their patients. But the way things are structured now isn’t working for the majority of Americans.
So this is just a phone call where I’m just venting because it’s so totally upsetting. Every day I’m doing things that just feel so wrong because it feels like I’m feeding a system that clearly does not have the patient in mind. It has the biggest stakeholders in mind, which are the executives, and the cardiologists is the people who make half million dollars, a year a billion dollars a year seems like they are at the center of our healthcare system. And it’s so frustrating.
This point bears repeating because it really gets to the core of what’s wrong with our system. It clearly doesn’t have patients in mind, like Mike said. And in a system that prioritizes profit over wellbeing, it’s no wonder that the responsibility often falls on the patient to make sure their health care needs are actually being met. Our next listener is Jackie from Los Angeles, and she felt the weight of this responsibility six years ago when seeking care for what ended up being stage four endometriosis. This is a painful condition that causes the tissue that normally lines the uterus to grow on the outside of it instead. flare ups are random and can render people bedridden. And in some cases like Jackie’s, it can even cause infertility.
I was diagnosed when I was 24. I had been in and out of the hospital with pelvic pain so severe, I couldn’t walk. No one could figure out what was wrong with me and I saw multiple specialists several of whom were completely dismissive of my pain. I finally found a guy now who was understanding who really believed me and said let’s go ahead and perform surgery to see what we find.
David Smith 34:17
Much like Anya’s story at the top of the episode, it took time for Jackie to convince a specialist to pay attention to the chronic pain she was experiencing because of endo. And the actual diagnosis added another layer to an already upsetting and life altering condition.
One of the hardest parts of getting diagnosed and the most expensive part of it is that even if you have all the symptoms of endo, only surgery can officially confirm it. So even at the time I had pretty good insurance and the first surgery cost me $10,000.
And you know what’s coming next. The bills didn’t stop there.
Managing endo just on a day-to-day basis is easily $500 every month and that’s on a good month. It requires multiple doctor’s appointments, medication, weekly therapy to cope with having a chronic illness. And every time they want to try something new to help me with my endo. And even though I’m desperate to escape the pain in the back of my head is always that question of well, okay, how much is this going to cost me?
Which was the very same question our next caller was asking yourself a couple of years ago.
My name is Aurora Kay, I am 26 years old. I am currently calling from North Wales in the UK. But I am originally from Illinois. In 2019, I went from being a very healthy young person to having some pretty severe abdominal pains. And it turns out I had extremely advanced untreated Crohn’s disease. It’s an autoimmune disorder, which means your immune system attacks it just like it would attack any sort of bacteria or virus or anything. It sees a part of your body as a foreign invader, which is bad. And it can cause really, really severe damage.
David Smith 36:24
What did the severe damage look like for Aurora? A ruptured small intestine that required an emergency surgery and bidding Good riddance to nearly 12 inches of that intestine.
I can’t sit up on my own, I couldn’t walk for a long time, it was just it was a lot. And then to find out that it’s a lifelong chronic illness was another blow.
Crohn’s required a complete 180 for Aurora’s diet and lifestyle, no more raw vegetables, taking it easy on the cheese and much more exercise. Unless, of course, her chronic fatigue kicked in, which is another side effect of Crohn’s. On top of that, you guessed it, the bills started piling up a couple months post op.
It’d be like a couple $100 here, and then it’d be like $2,000. And then a couple 100 again, when the last biggest bill came in, it was like $30,000 it was absolutely shocking.
Plus, it took Aurora six months of trial and error for her to get her hands on the medication that was best suited for her type of Crohn’s. And remember, when you’re living with a chronic disease like Crohn’s, every day of that six months feels like a lifetime.
My doctor was really upfront with me, she’s like, honestly, these probably aren’t going to help you that much. But you have to try and fail them before the insurance company will pay for the next course of treatment. She’s like the next one, I think is really going to help you. And it did, actually. So the next one I ended up on and I’m still on is Humira and that’s the expensive one.
David Smith 38:09
So when Aurora’s husband got a job offer back home in the UK, she was pleasantly surprised by her new costs of care. Before becoming eligible for the UK sponsored health insurance, the NHS, Aurora had to purchase six injections worth of Humira pins out of pocket, which costs her roughly 1700 bucks. Compare this to the price in the US where one injection will run you upwards of $5,000 with insurance and over $7,000 without.
And now that I’m on the NHS, my care is completely free. I can go to the doctor here and not worry at all about whether or not this is going to massively affect my finances. Being without good health insurance in the US sounds like an absolute nightmare. I mean, if I personally was still in the US and I had either not great or no health insurance I honestly do not know how I would keep myself alive. I mean, I’m on so many medications my state test to be monitored so often. And when a blood test can be $600 that’s rent, that can be your rent for an entire month. How do you choose between making sure your body isn’t rejecting medication or paying rent?
And Aurora’s nightmare was our next listeners reality. After moving to New York with dreams of making it in the acting biz. Joshua Dudley’s small intestine rerouted and back to Virginia.
Hi, I’m Joshua Dudley. I’m 45 I’m calling from my parents’ house where I’ve lived for the past six years, ever since I declared bankruptcy and had to move home because of complications from Crohn’s disease. I was having diarrhea and stomach pain for nearly 10 years, but I didn’t have insurance. And I pretty much just ignored it and felt I could power through it. So, in 2010, I had an emergency surgery with a bill that cost almost $200,000. And then six months later, I was back in Virginia. And they did the ileostomy reversal procedure, also called a takedown, and that surgery cost $50,000. And eventually, it came down to the point that I only had enough money to either declare bankruptcy or pay my rent. So I had to not pay my rent for three months to save up enough money to pay the cost of bankruptcy up front.
David Smith 40:55
Luckily, Joshua was able to get all of his medical bills written off, but the price he paid was bankruptcy, and hours and hours of patient advocacy. For the prices we pay and the care we receive, we shouldn’t have to spend hours googling or making phone calls in search of answers about what sort of care is available, where what documentation might be needed to access that care, how much that care is going to cost and whether or not that cost is even going to be covered by insurance. And now I’m sure you’re thinking, okay, okay, David, like we get it, the system categorically sucks. But for now, these are the cards we’ve been dealt. And until big systemic change comes to pass, which let’s be honest, happens at a snail’s pace. We have to learn how to play that game. Which is why next week, we’re talking to patient advocates whose job is helping people find their way through the healthcare maze. It’s the last episode of the season. And we promise to leave you with concrete steps for becoming a better healthcare consumer.
Speaker 9 42:06
You don’t always have to do what is being suggested. You have a brain; you know your body. Just kind of take a step back sometimes and also look at where you are with respect to your deductible, and decide what that cost benefit looks like for you
The COST OF CARE is a Lemonada Original. The show is produced by Jackie Danziger and Kegan Zema. Our associate producer is Giulia Hjort. Music is by Hannis Brown. Executive producers are Stephanie Wittels Wachs, Jessica Cordova Kramer and David Smith. Help others find our show by leaving us a rating and writing a review. If you have a story to share, call us at 8334-LEMONADA or send us an email at email@example.com. Follow us at @LemonadaMedia across all social platforms or find me on Twitter at @CHIDavidSmith. Lastly, we want to express our appreciation for the men and women who get up every day and work in this system with a passion for improving our health. We are grateful for the work you do. We’ll be back next week.