Episode 5: American Healthcare
In honor of Independence Day this week, the sisters unpack the American healthcare system, briefly compare it with other systems around the world, and give tips for how to navigate the logistics of getting care.
SHOW NOTES
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TRANSCRIPT
Kayla 0:10
You're listening to the My Sister's Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:17
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support.
Ella 0:29
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone, so let's make it a party and carry it together.
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Kayla 0:39
Welcome back to the My Sister’s Cancer podcast. This is Kayla Crum, one of your co-hosts, here with my sister Ella Beckett. Last week, we talked about what we like to call “Great Aunt Hilda and the diversity of cancer.” In that episode, we unpacked how everyone's experience with cancer is completely different, because cancer is a manifestation of you, and delved into not only the different types of cancer, but also how much variety is found in each type. This week, since when you're listening to this it’s just been the fourth of July, we wanted to do a mini deep dive into American healthcare. As we celebrate this country this week, we kind of wanted to take a look at the good, the bad, and the ugly of our healthcare system here. From the perspective of a patient on Ella’s part and a nurse on my part. There's a lot to unpack and I think that we hear a lot of controversy surrounding healthcare and we've all maybe had some frustrating experiences with it. But unless you're up close to it in some capacity, it's hard to really even understand how the system works or what exactly the issues are. So that's where we're going to be going today. Hang with us. I promise it won't just be like a lecture. We are going to share a lot of personal experience and hopefully some helpful advice and tidbits along the way. So, Ella, I was hoping you could start by giving a little logistical background as to how your cancer treatment got paid for, for lack of a better term.
Ella 2:29
Yeah. So as we've mentioned a few different times, I was 18 years old when I was diagnosed and still living with my mom and my dad, our mom and dad. And so I was still on my parents’ health insurance, because here in the United States, insurance is typically employer-based, and you can stay on your parents’ insurance until you are 26 years old. And I think that's pretty typical from what I've heard from people, that most people stay on their parents’ insurance until that point, or until you get married or something like that, or get your own full time job with benefits. But because I was freshly graduated from high school, still living with my parents, I was still on their health insurance. In addition to that, because I was 18 years old, we benefited from an amazing program called Children's Special Health Care. Correct me if I'm wrong, Kayla, is it specific to Michigan?
Kayla 3:43
So it is available, as far as I know, in every state, but exactly what it covers varies state to state.
Ella 3:51
Yeah. And there's never a good time to be diagnosed with cancer. But in many ways, I'm really grateful that I was diagnosed when I was, because then I was able to qualify for Children's Special Health Care, and they pretty much cover anything that your insurance plan, your employer insurance plan, does not cover. And so this was a huge benefit, blessing, whatever you want to call it, in my experience, because we would have quite literally racked up millions of dollars in debt if it had not been for my health insurance and this additional layer of insurance.
Kayla 4:48
Yeah. I just want to point out that it might sound strange that she qualified for this Children's Special Health Care at age 18. Luckily, this program goes up until age 21, up to and including, I believe, age 21. So you age out when you're 22, which is helpful because that's kind of the college years. I think that's maybe part of why the program was designed that way is that, in theory, a lot of people aren't truly on their own financially at 18, even though we're technically adults, we can vote and all that good stuff. But I'm very thankful that most of your treatment, including your transplant, happened before that magic age of 22 when you didn't have that anymore. It is need-based to an extent, but certain diagnoses just cover you completely. And I think cancer is one of those where you just get almost unlimited financial support. Now, that doesn't extend to helping you pay for your house and stuff like that, but as far as the medical costs go, it was almost entirely covered, which is just, like you said, an unimaginable blessing, because that's just not the case for so many people.
Ella 6:04
An insurance company will mail you kind of the breakdown of, here's what we covered, here's what this other program covered, and then here's what you're responsible for. And we were just floored by some of those explanation of benefits that came through because literally some of the treatments were thousands and thousands and thousands of dollars, especially when it involves an inpatient stay or a variety of other procedures, including the stem cell transplant that is just very expensive. And so to have that pretty much completely covered was just a huge gift, for sure.
Kayla 6:55
It's confusing to people when they get explanation of benefits in the mail. I know that when I was new to having my own insurance, that confused me. So if you see something called an EOB, explanation of benefits, that is not a bill yet. So, again, just first tidbit of advice, I guess as we're going through this episode, when you get an EOB/explanation of benefits, it might say one of those two things on top. Sometimes they say, this is not a bill, but they're not usually that clear. Don't think you immediately have to send whatever is listed there as the money amount. Sometimes you'll see that they covered all of it. So it'll say like, patient owes zero, but sometimes it'll say, patient owes $500. And you're like, oh my gosh. But if it doesn't have a bill, if it doesn't say “bill” at the top and have a due date and a place to send it, just wait. Hold your horses and wait for the actual bill. Because nine times out of ten, you get an explanation of benefits first. Just explaining here's what we think it's all going to shake out like, and then we'll explain more later. But it goes through a lot of who's going to pay for what on the back end before you get your final bill. So don't jump the gun and pay before you have to, I guess is what I'm saying, because you might end up paying less than what you first see on that explanation of benefits. Ella, I know that your husband, as well, was older when he found his cancer. I don't know if we've mentioned him on this podcast before, but Ella is married to another cancer survivor, and so I'm sure his experience was different with insurance. Are you comfortable sharing about any of that?
Ella 9:34
Definitely, yeah. We always want to share his story and his experience with insurance because it's definitely a lesson that he learned the hard way, and I think it encourages us to tell everyone we know to make sure to have insurance. Health insurance is really important, and unfortunately, the way it all shook out was that he was as we talked about, he was still on his parents’ insurance and he had secured a full time job that had great benefits. And unfortunately, there was this window of time between his 26th birthday and when he was starting this full time job, like, two months. Like, not very long. Yeah, literally, like eight weeks or something like that. And so, as a young, healthy person, he thought, oh, I can go eight weeks. Everything should be fine. And within those eight weeks, he ended up having a seizure. And then a barrage of tests and things that really, without health insurance, was astronomical. Now, thankfully, there's some things you can do to backtrack a little bit and have - I believe his parents’ insurance did end up covering some of that. But it's just a good lesson that even if it's only a few weeks of time between when one insurance is active and the next one starts, it's just so important to have health insurance. You never know what could happen.
Kayla 10:41
I think he rode in an ambulance too, at that time, didn't he, because of the seizure? That right there is at least $1,000, usually, an ambulance ride.
Ella
Yeah, yup.
Kayla 10:53
Oh, yeah, let him be a lesson. Unfortunately, to anyone listening, we know it's not that easy. I mean, it's a huge headache to sign up for insurance, to navigate insurance, so we're going to get into that a little bit and hopefully, if you feel completely lost, give you a little more ground to stand on in the insurance realm. But if nothing else, just hear us say that it's worth the work, because you don't want to be stuck with all those bills. And like she said, some of them got covered, but that's double the work to go back and call and ask and fill out these forms and see if you can get some exceptions and all that stuff. Yeah. Ella, I guess before we move on, I'm just wondering if you have any memories of, like, when you turned 22 then and aged out of Children's Special Health Care, or when you're married now, so you're presumably switched over to your own plan with your husband. Was that rocky, those transitions, or as you continue to have cancer follow-up care, or has it been pretty smooth?
Ella 12:09
Yeah, I don't really remember the whole aging out of Children's Special Health Care because I was still on mom and dad's insurance. And so, honestly, I was a little bit unaware of what a lot of my care cost, I think, after that point. But, yes, transitioning to our own plan, unfortunately, because we're both cancer survivors and have a host of appointments that we have to go to every year, we pretty much just plan to meet our out of pocket deductible. And, yeah, we spend a lot on our health care. We have a decent coverage plan, but there's still a good amount of out of pocket costs for us that we probably wouldn't have if we didn't have to see the specialists and get the different kinds of tests and things that other people might not have to deal with.
Kayla 13:19
For sure. That actually brings me to my next point, which is just kind of basic definitions of health care insurance terms. So that's great. You mentioned the word deductible, out of pocket. I think we all hear those, if not early on in life, for sure by the time you're a teenager or college student, you've at least heard the terms. But, like, what does that all mean? Right? So, premium, that's a monthly payment you make to an insurance company, often through your employer, but not always. That covers you with that insurance plan. So you pay, say, a couple of hundred dollars out of your paycheck every month. Usually you don't even see that money. It's just like if you look at your pay stub, you'll see it, but it just gets taken out before you ever take home your paycheck. And that goes towards your health plan through your employer or through a private company, if you're doing that. So that's saying, hey, we're paying into this system so that you take care of us when we need you. Unfortunately, even though you pay premiums every month, that doesn't cover every healthcare need that comes up for you. So usually it's set up in such a way in the United States that you have a deductible to meet. So that means every calendar year, you have to hit this amount before your insurance will start paying the difference. So some people have to pay for everything, full cost, until they hit, say, $5,000 for their family. That's just an example for the year. So say your kid breaks an arm, one of you has a surgery, you have a baby, you'll probably hit that by, like, March if you did all that in two months. Some people never hit their deductible. Say you're just coasting along, you just get well child visits, annual checkups at your primary care, your flu shot. You might never hit your deductible, therefore, you have to pay every time you go. Or some insurance companies will cover that preventative care. So deductible is kind of a loaded term, because your plan determines how much your deductible is and what it's going to look like as you go along. They might chip in as you go along, called coinsurance, and they might chip in after you meet your deductible, which is called a co-payment. So “co” is when you're both paying either before or after your deductible, but either way, that's a huge thing that a lot of people like Ella and her husband are kind of like, well, we know we're going to hit this every year with the care we require. So some people kind of have to budget to have that extra cash up front the first few months of the year to get their care. And then they know that insurance will kind of swoop in once that five grand or whatever it is, is reached and help them continue to cover the rest of the costs. There is something called an out of pocket maximum, which is even higher than the deductible, and that's truly like the point of no return in that it’s a max dollar amount that you would pay for a calendar year, and insurance will cover all the rest. No co-payments, nothing else expected of you at that point. And again, that varies widely, that amount with what plan you have. We used to have something called a lifetime limit, which meant your insurance could tell you “you're done.” Like, we're not paying for anything else once you hit a limit of whatever amount they decided. I wish you could see Ella’s face, because she's looking alarmed right now, because she definitely would have hit whatever that used to be. We'll get into this a little bit more in a minute, but what's come to be known as Obamacare or the Affordable Health Act in the US that passed in 2012, I believe 2010, somewhere in there, changed that. So that's no longer legal. They can't just say, you know what? We're not paying for you anymore. Because -
Ella 17:47
Good.
Kayla 17:48
- these people who had long term chronic illness or cancer that wouldn't go away, were just left with no options. So thankfully, that's not a thing anymore. That doesn't mean it's not expensive for people, but they can't just get kicked out of plans because they've cost too much. The Affordable Care Act also eliminated discrimination based on preexisting conditions. So my sister and her husband, no insurance company wants to cover them. That's a horrible thing to say, but nobody wants a married couple who are both cancer survivors with ongoing needs. And that's true of anybody with chronic illness or whatever. In years past, insurance companies could deny you because they know you're going to be expensive. But now, in the last ten or so years in the United States, that's no longer legal. They can't just say, we don't want you because you're going to cost us too much. So those two protections have been good in the last decade. So that brings me to a little bit broader of a perspective. Ella, do you want to give a zoomed out view of what exactly our health care system looks like here in America?
Ella 19:02
Yeah. So from my perspective and from a little bit of what I've learned in social work classes and just being a part of the system, I suppose, as a patient, we do not have a nationwide insurance system. So, as we've mentioned a lot of times, people will get their health insurance through their employer, or you can also purchase it through a private Marketplace. Also, there are certain programs through the government you have probably heard of, Medicaid and Medicare. I would say those are the two major public health insurance programs. And I feel like people always get these two mixed up. But the way that I always remember it is that Medicare is specifically for elderly people and or people who are disabled or have a variety of different diseases, whereas Medicaid is specifically for those who are economically disadvantaged. So “care” versus “caid”, that's the difference there. Both are funded by - or excuse me, Medicaid is funded by both federal and state governments, but is administered by each state. So coverage varies state to state, and there's federal minimum requirements that must be met. And then, Kayla, I feel like you can speak a little bit better specifically to the Affordable Care Act.
Kayla 20:41
We mentioned earlier in the episode that most people get insurance through their employer in the United States. But obviously that leaves a lot of people out of the equation. People who are part-time workers or certain small companies aren't required to give you benefits, if you haven't worked somewhere long enough sometimes they don't have to give you benefits or you just don't have a job because maybe you have a partner or roommate or whatever living situation where you're not the breadwinner, so to speak. So that leaves out a good chunk of people who otherwise need insurance. So that's part of what Obamacare - it's called that because President Obama is the one who spearheaded this effort - but technically, it is called the Affordable Care Act. That's part of what it aimed to change, is making sure that everybody at least has an option to be covered. So a big part of it was having an online marketplace. Another big thing that the Affordable Care Act, um, pushed was the idea of incentivizing wellness. This has some pros and cons. The idea is that instead of continuing to allow our healthcare system to profit off of people being sick, in theory, more tests, more X rays, more medicine, more surgeries, more money, because it is a for-profit system here in America in a lot of cases. The idea was, if we incentivize wellness by setting up financial perks when people stay well - perks meaning for the insurance companies and the hospitals, they get more money back from various programs if they keep people well - they thought that would help with some of our… you know, overwhelm of the system. And I'm not saying that doctors out there were purposely keeping people sick to make money. I don't think it's on that individual level so much. But when you zoom out and start looking at like, hospital budgeting and things like that, they really wanted to steer more of the budgets of these places towards wellness care and keeping people away without the hospital feeling like they were going to lose all their money by keeping people home and healthy. That's good to an extent. Obviously it sounds good on the surface, and I have seen, as a nurse, an emphasis on preventative care and wellness over the past five plus years, which is great. However, it's also led to some weird little loopholes where now insurance companies are sort of nitpicking what wellness and preventative care means. So I know for me and my current plan, which I won't name names, but this is pretty common among plans, is that I go in for my annual checkup. You might have heard it called a preventative care visit, a wellness visit, your annual physical. That's probably what I've heard the most. When I go for that, there's a handout I get, which that's an improvement over what you used to get, which was nothing, explaining that here's what's covered. We'll take your vital signs, we'll listen to you with our stethoscope. We'll screen for a couple of things. But if you have anything wrong with you that you want to chat with your doctor about, if you open your mouth and ask that question when they bill that visit, it's automatically going to not be a preventative visit anymore, because now they're actively dealing with a problem. So a silly example of this is that I had a history of brittle nails, like fingernails, and they would peel off, and I kicked the habit of biting my nails, but they still just were falling off, peeling off. It didn't feel like the safest or cleanest thing to me as a nurse, especially with your nails breaking off and just, I don't know. It sounds so silly and trivial. Which is why I thought it would be no big deal to bring it up to my doctor and just say, hey, some friends of mine mentioned you can take supplements to help with your nails. I don't want to just take their advice, like, what do you, as the doctors, think, can I take this supplement to help with my nail strength and growth? And my doctor was like, yeah, of course. This is a good one. Here's the dose. You can just get it at any over-the-counter pharmacy. I was like, awesome. Well, I got an $80 bill for that because, because I brought up my nail problem. $80 for us to have about a two minute conversation about my fingernails, and then that billing code dropped that $80 charge. Luckily, I'm in a place where that was okay, and I could pay for that. But when you go into this visit thinking it's covered because now a lot of insurance plans will cover an annual physical, no cost to the patient… a surprise bill is kind of like a slap in the face when you're like, isn't this when I'm supposed to bring up my concerns? I feel like we've kind of gone… we’ve swung too far the other way, where we used to be too focused on making money off of sick people, but now it's like any little thing you bring up outside of wellness is like a penalty to the patient.
Ella 26:08
So when do they suggest that you bring those things up then? If you have these questions about your health, or do they just not want you to?
Kayla 26:19
That's how it feels. It feels like they don't want you to. And when I say they, I don't even really know who I'm talking about. The insurance company, the doctor, the system. Like, it’s so complex and multilayered. I would bet that my doctor had no idea that that conversation would cost me $80. It's not like these doctors are personally benefiting. She didn't get that $80 in her pocket. No, it's just, having been a nurse in an outpatient setting, when you talk about things with patients, you drop certain codes. They're called ICD-10 codes, and you have to record what you guys talked about, what advice you gave to the patient, and those trigger the insurance companies to charge money. And so it's tricky because on the surface, it sounds like, great. We'll incentivize people to stay well, by saying, hey, your preventative stuff's covered. Come and get checked every year, that's going to be great. And people are going to come because it's free. But people are now afraid to bring up what they're sick with and concerned about because they'll get charged. There's not a better time to bring it up because if you go for a whole separate visit, you get a visit code as well. So it's actually more expensive to do it separately.
Ella 27:32
Right.
Kayla 27:33
So I guess I'm just saying, please do bring up what you're concerned about. Just be aware that it is going to probably cost you extra. And I just wish with all my heart that was different. One option is you could do electronic messaging or a phone call. I mean, I wonder if I had called the nurse at my doctor's office and asked that question and she got the answer from the doctor, that probably wouldn't have cost me anything. So for something small like that… that is part of their job is to take your phone calls and answer your questions, because we don't always necessarily drop codes for little things like that. But I mean, if it's a bigger concern than, like, your fingernails, you do really need to bring it up to your doctor whether it's going to cost you money or not. It's an unfortunate conundrum. So that was a bit of a tangent off of the Affordable Care Act, but that's sort of where we're at. We're in a recent change, really, in America, because we had the Affordable Care Act about ten years ago and now we've of course had COVID over the last few years and it wasn't that great to begin with, so we're still sort of reeling with all of that. One thing I want to touch on before we move on from the Affordable Care Act is the individual mandate. You might have heard of that term. It was pretty controversial a while back. Part of the Affordable Care Act said that it was illegal to not have health insurance. So you could be fined. I don't know that it was criminal. I don't think you could do jail time for it, but you could be fined in civil court or whatever for not having health insurance. That has now been overturned and repealed. So you technically do not have to have insurance. But like Ella mentioned at the beginning, just when you think you're going to be okay for however many weeks you'll be without it, disaster may strike. So just be aware of the risk of having to eat those costs. When you were being treated for cancer, obviously you got a lot of your chemotherapy in an outpatient setting, you got some in an inpatient setting, but then Mom also helped administer some injections and a ton of oral meds at home.
Ella 29:50
Yes.
Kayla 29:54
Do you have any memories, anything to share about the medications, the cost, the difficulty of getting them, things like that.
Ella 30:03
So I really think that this was my first experience being launched into having to deal with the pharmacies, and it was a rude awakening. I will say I don't have really clear examples, but just so many frustrating situations that thankfully Mom was able to and well equipped to deal with. But I think it goes back to just constantly having to advocate for yourself and how frustrating that can be. I remember we would be at an appointment and the doctor would send in a prescription and say, okay, it should be ready to pick up, to be picked up on your way home or whatever. And by the time we'd get out of the clinic, we'd swing by the pharmacy. Thankfully, there was a pharmacy right within the hospital, which is super nice, very accessible, and you'd get there and the prescription wouldn't be ready and just so many things like that. Or they said they were going to call it in and then you go to the pharmacy and they don't have the order, just all these things where it's like, oh my gosh, the system is so broken. And thankfully, again, I feel like we were able to navigate a lot of that. We were uniquely equipped to handle these super frustrating situations. That doesn't mean we didn't get angry at them, we fumed with righteous anger. But I just really feel for people that have no experience or just really don't have the capacity to fight like heck just to get the prescription that their doctor ordered for them, because you really do have to fight tooth and nail a lot of times to get what your doctor ordered for you, which is just very frustrating to me.
Kayla 32:07
Yeah, thanks for sharing that because I think you really hit the nail on the head for people with any sort of chronic illness. It's just like a constant uphill battle. I'm going to share a little bit about my experience on the nursing side of helping people get their medications. And I just want to start with this story that we had a guest speaker once come to my office that I worked at. It was an outpatient clinic, a specialty clinic for children. And he happened be from the United Kingdom. And we'll touch on this a little bit later, that there's other models out there, other healthcare models. He just was flabbergasted that over half of my working hours as a full-time nurse in an outpatient clinic was spent trying to prove with documentation that my patients needed the drug the doctor prescribed to the insurance company. So that's called a prior authorization. A lot of times PA. You might hear the term PA thrown around. I spent so much time on the phone gathering documentation, holding. At one point, a certain insurance company had an average hold time of 49 minutes. So, like, you would put your headset on and listen to that hold music while you tried to get other stuff done to speak to one person who was maybe going to tell you, oh, sorry, we still can't cover that. I don't think that my eyes had been opened even in nursing school and then even working as a hospital nurse, that's a little different because you care for the patients in front of you right then, and you have everything at your fingertips, and then they get billed later. And I don't see that as the nurse. But when you work in an outpatient clinic and your patients are calling you saying, “I showed up to the pharmacy and they're telling me my insurance won't take this med, that I just left my doctor appointment and my doctor said I need this”... as a nurse, I just got to be so well versed in, okay, so this insurance company prefers this brand of inhaler, and this insurance company prefers this brand of pill. So doctor puts in the order for something they believe their patient needs, it gets sent to the pharmacy. The pharmacy sends a little ping to insurance. Insurance says, oh, no, we don't like that. Pharmacy goes back to the doctor and says, they don't like that. If you're lucky! Sometimes pharmacy just says “sorry” to the patient and doesn't even notify the doctor's office. So I hope that made some sort of sense. Clearly, it's almost a nonsensical system, but I just was infuriated when I worked in that environment for like, four years. I was happy to help because I could just hear the relief in people's voices when I could make things work for them. That mom that's been on the phone for hours trying to get this drug for her kid. Of course, it's always Friday afternoon when one pharmacy is out of it and this other pharmacy doesn't work with that insurance company. I've had those moments where I can really make it work for people, and then I've had horrible moments where I have to tell a parent, this is what we want to do for your child, and it's just not available. They're going to have to try medicines A, B and C for the next three months, even though we know, based on all our experience of seeing other kids with this exact issue, that they're going to need medicine D, but we have to prove it first to the insurance company by having them fail. The other thing that was surprising to me when I became an outpatient nurse is how few companies there truly are in the background of all of this. I don't want to misspeak, but from my personal experience working within the healthcare system, I worked with about ten different parent companies that controlled 90% of my patients' healthcare. So that includes pharmacy, insurance and hospital-side. So the hospital I worked for under the umbrella of… my outpatient office fell under the umbrella of a hospital system. That hospital system had a sister company that was an insurance system. Seems like there's a conflict of interest there to me, that I've never understood how that's even allowed. That might sound like that would make things easier, but a lot of times it doesn't, because they are going to have their own rules and exceptions and whatever, and we only provide these drugs. We want it this way because we've made these financially beneficial deals with companies A, B and C who make drugs. I worked with, like I said, ten or less other companies. I watched multiple specialty pharmacies that I worked with get absorbed by larger parent companies. It was these pharmacies that catered to really specific children's disease needs, and they just got bought up and bought up by these big companies, who then said they would have them as a specialty, like, team within the company. But the service level just went way down. It's tricky out there. I really struggled with feeling like I was this cog in a wheel of a very broken system.
Ella 37:30
There has to be a better way. Is there a better way, Kayla?
Kayla 37:37
I wish I had a magical answer for that. I do know that around the world there's different types of healthcare. In America, the United States of America, we often hear people fighting about universal health care, sometimes called socialized medicine, versus what we have now, as if those are two distinct things that are well defined. I don't think that's true. There's a lot of nuance in universal health care. There's actually, like three main types that are found around the world, and even within that, there's a lot of variety. What we do in the US is our own brand of a weird mix. Like we described earlier, Ella told you about Medicaid, Medicare, private marketplace, employer plans. We have kind of a mishmash and people kind of act like it's this or a completely government-funded-only plan that is an option. The UK is probably the most well known example of a government-funded plan. I mentioned that man earlier who came to speak at my office and just couldn't believe that the nurses had to spend hours of their time fighting for kids to get these drugs, when he's like, I just pick it up for free. He had the same disease as the kids that we took care of. And he's like, I just get this drug for free. Because we all have one plan and they know we need this drug and so it's covered. I'm sure they have their own issues. Some of those issues include longer waiting lists for treatment sometimes because they serve everybody, they don't turn anybody away. They pay for everybody. So sometimes there's a longer wait list. Sometimes, especially if you have an aging population, there's less people paying into the taxes. So the older people start to outnumber the younger people. And then we have some issues about how it's getting funded. But yeah, that blew my mind, just realizing he could just go to any pharmacy and pick up the drug that he needed at no cost to him. Now, obviously, all of this is better than countries that have no healthcare infrastructure at all. So you think about some developing nations, Africa, some places in South America, rural parts of India and China, where there's just absolutely nothing. I mean, the government's not swooping in with Medicaid. All you can do is pay for it out of your pocket completely or rely on aid organizations, things like the World Health Organization, UNICEF, stuff like that. So I just spent a lot of time complaining about the current state of American healthcare. But I am very thankful to live in a country where we have healthcare infrastructure at all and where there are programs like Children's Special Health Care that you benefited from, Ella, so I just want to acknowledge our privilege in that. Obviously, me wishing that the system could be better here doesn't mean that I think it's the worst in the world and doesn't mean that I wish it wasn't better for everyone everywhere. I was hoping that you could tell us from the social work perspective that you have, and maybe as a patient too, how people can get help when they're confused about all of this, when they need financial assistance during their cancer journey in particular. I know you said you were on Mom and Dad's plan and had Children's Special Health Care, so you got to be a little bit blissfully unaware for a while. But now you've walked the path for a few years as an adult with your own plan. So any advice for people going through it?
Ella 41:23
Yeah, what you were saying earlier about those hard conversations where you had to tell a mom that you couldn't get their child's medication really made me think of when I was being treated. I really just saw a lot of hard things where the social worker would have to… the family was there to receive treatment, and the social worker would have to walk over and have this really hard conversation with the family and express to them that for whatever reason, that treatment hadn't been prior authorized by the insurance and they weren't able to receive their treatment that day. And that's just so devastating to have to do that. But I say all that because that's really what sparked in me a passion for social work and for wanting to do better and kind of doing something to ensure that those families aren't just slipping through the cracks. And so what I would say to answer your question is that your social worker and your nurse navigator and whoever else is on your care team is literally there to help you. Right from the time that you're diagnosed, you should be introduced to who is on your care team, and that should include a social worker. And that person's job is to help you navigate through your cancer journey. Whether it's financially, social-emotional health and well-being, any other resources that you might need. I mean, transportation is a huge thing that if you don't have a reliable vehicle to get to and from your cancer treatment, your social worker should be able to help you find those resources. Or if your family has food insecurity and you're not, you know, a lot of times you have to buy meals on the go because you're driving a distance to go and get your treatment and everything. Again, your social worker should be able to help you with those things. And you might have to advocate for yourself. You should advocate for yourself. But at the end of the day, those people should be advocating on your behalf too. And so I guess my biggest piece of advice would just be to really lean into your social worker because they're there to help you. I feel like that was a roundabout answer to your question.
Kayla 44:14
No, that was a great point, because I think, especially in the wake of a fresh diagnosis, they're like, this is so and so. This is so and so. We're here to support you. And you're, like, just dazed and confused because you're still in shock. I think it's key to remember, oh, yeah, wait. I have a whole team of people with different specialties here to support me, and their literal job is just to help me. It's not being an imposition to ask for help. I’m overwhelmed by trying to figure all this out. And it's their job to help, so don't be afraid to ask. I wish no one ever had to ask and that everything was preemptively done for you, but that's just not the world we live in. So don't be afraid to ask for help. I will say from the nursing perspective, especially when I worked in that outpatient clinic and assisted families with stuff like this, keeping good track and information of insurance related stuff and pharmacy related stuff is going to really help you. Open a note on your phone or have a little notebook in your purse or backpack or whatever. You or the person, like, maybe you have a caregiver who's mostly helping you navigate your needs. Somebody should be taking a careful note of, oh, we went to the pharmacy and they said this wasn't covered. So then circle back, bring that back to your doctor's office. Write down the name of the person at the pharmacy that said it wasn't covered. I very quickly learned on the phone as a nurse to take people's names. It's not to get people in trouble, but it's so that you talk to pharmacy tech Barbara, who told you X about your insurance, and then you call back and get pharmacy tech Sally who says, oh, no, blah, blah, blah. If you can at least drop names, often pharmacies especially are small enough that those people know each other. And I've had people be like, okay, we're going to put you on hold and figure out which one of us is right. And then they get to an answer, and maybe the answer is somewhere in the middle and they were both doing something a little bit wrong, and then we can solve the problem. When you call insurance, get people's names, ask them their title. I find that to be helpful too, because you might get, like, a customer service person, eventually you might get forwarded to somebody who's, like, a specialist for cancer patients. There are teams dedicated to different diseases, and if you can get one person by name and title, and you kind of know that they did a good job - so it can be for a good reason, too. Sometimes they'll even give you their extension or tell you a better number to call to get a certain team of people. Don't be afraid to ask questions like that. People's names, titles, if there's a more direct line. You will run into a lot of walls. People will say, “sorry, no, you’ve just got to call the main line.” Or “I can't help you with that.” But don't be afraid to at least ask and take names. It's going to be so helpful. And then when you do bring that back to your social worker or nurse, you can say, like, I talked to so and so insurance rep. This was his title. He told me, I can't have X. Then your social worker or nurse, who has a little more clout when they call, can say like, hey, your employee so and so told my patient this. They apparently work on this team. Help me understand why this isn't working, because my patient needs this. So I wish the patient didn't have to do anything. But there are different things that patients are allowed to talk to them about versus doctor's offices. So just taking notes on your experiences, even if it's a horrible experience, then bring that to your social worker or nurse who can then go to bat for you. The more detail you have, the better. So I hate to give people more work because it's the last thing you need when you're walking this road. But it is very helpful in this setting.
Ella 48:13
You know, people don't want to be a bother or ask for the world, but I just really think, again, utilizing your resources… your social worker hopefully makes you aware of things that you could really benefit from, whether that's a support group of people who are going to understand what you're going through and you can find community there. Or, I had a lot of difficulty walking for a really long time after my treatment. I was dealing with some peripheral neuropathy and it was really difficult for me to walk in a normal parking lot. So I was able to get a handicap pass, and that was just so helpful. But obviously you're not going to know how to do all of those things because you've never had to apply for a handicap pass before. But that's what those people are there for, is to help you through that process. Even if you're going to college or if you're in high school, wherever your situation is, they should have somebody who helps make accommodations for you. And it's really humbling to have to ask for help. I think I was really embarrassed at times to have to have the handicap pass or accommodations for my college experience. But I think the more that you can ask for those things, the better supported you're going to be throughout your journey. So I would just encourage everyone to - don't be afraid to ask for help.
Kayla 49:51
For sure. I'm sensing a theme here. Ask for help, advocate for yourself. And I wish again it didn't have to be that way, but it is. We're stuck here in the current world we have, so don't be afraid to ask. Thanks for sticking with us. If you're still listening to this more sciency, logistical heavy episode of My Sister's Cancer, I think that this is the nitty gritty logistics that aren't fun to really talk about and yet are super overwhelming to those of us going through it. So I hope you found, if nothing else, some solidarity. Our main goal is just always that you feel less alone after you listen. We would love for you to comment on the Instagram post for this episode. We also have a website, mysisterscancer.co, and I also wanted to let you know that we are starting a Patreon. So, a Patreon is a way for creators like ourselves to allow listeners who appreciate their work to support them financially. Just like we've been saying through this whole show, ask for help, don't be afraid to ask. So it's kind of awkward for us to say this, but we put a lot of time and work and actual money, too, into hosting this podcast, paying for the software and equipment to run it, and putting some time into editing and recording it. So we would really love your support financially if you're able, just because we want to keep reaching all of you who are listening. And to make that continue to happen, we might need to at least break even on this endeavor. So we will be putting some information about our Patreon in the show notes. We would love to grow that into a community where those of us who subscribe and maybe, you know, give a couple of dollars a month can have even deeper conversations. Patreon has a great app that has ways you can comment and interact with other listeners, so we'd love for that to grow into a community over there as well. So this was episode five of the My Sister's Cancer podcast. We'll be back next week with a much less technical conversation about how it feels to lose control when you get your cancer diagnosis and looking at that from all angles. So we will see you next time.