Paying for Breast Cancer Care

Jamie DePolo: Hello! As always, thanks for listening. We're excited to welcome two guests to our podcast on paying for breast cancer care. Loriana Hernandez-Aldama is an award-winning TV news personality with more than two decades of on-air experience. She's also a two-time cancer survivor — leukemia and breast cancer — and founder of ArmorUp for Life, a nonprofit working to give all cancer patients access to the best treatment options, as well as to support underserved and underrepresented cancer patients by giving them tools for success during diagnosis, treatment, and survivorship. Loriana is also the author of Becoming the Story: The Power of PREhab. 

Joanna Morales is a cancer rights attorney, author, speaker, and CEO of Triage Cancer, a national non-profit organization providing free education on the legal and practical issues that may affect people diagnosed with cancer and their caregivers. Joanna has spent nearly 30 years working on behalf of people with cancer, including six as an adjunct professor of law at Loyola Law School and Wayne State University Law School, and eight years at the John Wayne Cancer Institute's Psychosocial Care Program. 

Loriana has experienced some of the difficulties people face when paying for cancer care. Joanna has helped people navigate the system of paying for cancer care, so they are the perfect duo to talk about this topic. Loriana and Joanna, welcome to the podcast.

Loriana Hernandez-Aldama: Thank you for having us.

Joanna Morales: Thank you so much.

Jamie DePolo: I am thrilled that you are here, and Loriana, I'd like to start with you, if you wouldn't mind sharing a little bit about your two diagnoses. 

Loriana Hernandez-Aldama: Absolutely. I was just going to say that I came to the breast cancer space by way of AML leukemia. Often, we hear sometimes that the breast cancer treatment can… certain chemos can actually cause AML leukemia, but for me, it was the other way around. I was living the life as a news anchor, and at the peak of my career, in the best shape of my life, and I was diagnosed with AML leukemia, spent a year in the hospital battling AML leukemia, at Johns Hopkins. Ten months in, that didn't work. I needed a bone marrow transplant, which required another 100 days. 

So, that timeframe, when you talk financial toxicity, I was in the hospital for a year, separated from my son. Child care, transportation, all of that, and it took us years to dig out of that debt. 

But on the fifth anniversary of surviving AML leukemia — which we know five years is a huge milestone — we had a party to celebrate my remission, and I had made it that far, and on that exact date I got a phone call saying you have breast cancer. And my heart sank, because I thought on so many levels, how can I go through another battle again — emotionally, physically, spiritually, and another big picture, financially, because we were still broke from going through the first cancer.

My husband and I both came from great careers, and I would always say, “How do other people get through the financial toxicity of fighting cancer if you're not very well established financially?” when we struggled. We needed a GoFundMe, and we know a GoFundMe is not a plan.

Jamie DePolo: Right. Right. Thank you for sharing that. Joanna, Loriana talked about some of the issues she faced, and I know that each person's situation is unique, but from your experience and vantage point, are there about four issues, maybe, that a lot of people face when they're paying for cancer care? 

Joanna Morales: Absolutely. I think some of the most common issues that impact people, kind of regardless of what type of cancer, or your socioeconomic status, or where you live, or what type of job you have, there are some key issues that I think significantly impact a patient and their family's financial situation. 

The first is not having adequate health insurance coverage. So, you have a plan but you have very high out-of-pocket costs, or the plan doesn't cover your providers or your prescription drugs, so you're paying more out of pocket. That, I think, is really the biggest impact on financial toxicity.

The second issue I would say is, patients don't review their medical bills, and you kind of feel like you shouldn't have to, right? So, that when you get the bill in the mail or by email, you assume it's correct and that the provider has billed your insurance company, and your insurance company has paid the provider what they're owed and then they send you a bill for the rest. But we know that up to 80% of all medical bills have errors, and those errors turn into increased costs for patients. Because patients just assume that those bills are correct, they're often paying for things that they don't need to or they shouldn't have to. And so that, obviously, contributes to someone's financial situation. 

And then, kind of in the same vein, the third issue is when an insurance company denies coverage for medical care, whether it be a screening test, or a surgery, or chemotherapy, or a prescription drug. When an insurance company denies care or coverage for that care, we shouldn't take no for an answer, because we know that when patients actually appeal those denials of coverage, more than 50% of the time those appeals are actually being overturned. And so that's another situation where patients are actually either not getting the care that's been prescribed by their healthcare team or they're paying for that care out of pocket when their insurance company really should have been paying for that care, and that only contributes more to that financial burden. 

And then there are a lot of things that impact the financial burden of a cancer diagnosis. I think the one that's most often overlooked is how a cancer diagnosis can impact someone's work and their income related to work. So, it's incredibly important for people to understand their options for staying at work, taking time off, and then replacing any income that's being lost when they are taking time off work. I would say those are probably the top four things that have the greatest impact on someone's financial situation. 

Loriana Hernandez-Aldama: I wanted to jump in, because Joanna hit on all of the issues. Not only did I battle AML leukemia and breast cancer, but now my sister, my “shero”, who was my bone marrow donor and saved my life, she is now battling breast cancer. And to look at the differences, I battled within the hospital system as an inpatient, she's outpatient. 

For me, I had no choice to work, and we had to struggle on how we were going to pay our bills. On the flip side, you have the situation of being immune-compromised — my sister is struggling because she's a pre-K teacher. She couldn't miss work because she needed her paycheck, and she was worried about how does she get unemployment? How does she get disability? That could take six months, and she was missing time from work and missing pay, just to go in and get her chemo and worried about that. And you think how many patients have to worry about the income they're going to lose to go in, not just to get chemo, but for all the other appointments. To get their port put in, to get the additional scans and the testing. 

And when you try to apply for financial aid, as I did myself and also my sister has tried to do, they often look at last year's tax return. Well, yeah, maybe last year you were doing fine, but if you're not bringing in money this year, you're still broke. And while I love that there… we need help for everybody. But if you're not a certain percentage below the poverty line and you're just barely making ends meet, or you’re middle income, you're in trouble because you're going to...within that time frame, if you can't contribute to your family’s overhead of bills, and sending kids to college, or your overall bills because you're not working, it doesn't matter where you fall. If what you're sending out financially is more than you're bringing in, you're still broke.

I will say my husband, just a few months ago — fortunately, he found another job — but the company he was working for shut down. And there I was, we had no COBRA, no unemployment, no insurance, and I was in tears thinking, “Okay, how am I going to get through this as a two-time cancer survivor who needs scan after scan?” And I called the well-established multidisciplinary institution here in Atlanta that I have my care team with, and they had one person running the financial aid department. One person who happened to be on vacation, and there I was canceling scans. I said, “How is this possible?” 

And again, as Joanna mentioned, you have to be your best advocate. You have to push and push, and I kept pushing saying I need these scans. I'm very high risk. I can't miss these. I'm in pain, and I was not going to let up until somebody found a way to help me get into the marketplace, get new insurance. 

But for those who are listening right now, who are in that place where, you know, you can't go to work because of your treatment. You can't figure out a way to fill the gap, and then you're having to launch a GoFundMe — it's not a plan, but we need something better to support patients so we can improve patient outcomes. And this is what frustrates me that starting with my cancer — both my cancer treatments — and my sister, and I look at the system, and we're still operating in silos, there's still a lot of red tape, and there's a lot of talk, but we're not seeing so much improvement in the process.

Jamie DePolo: Yes, that's absolutely right. Well, I do want to ask you, Loriana, the first issue that Joanna mentioned about insurance coverage, and maybe it's not as good as you think it is, or maybe there are things that are not covered that you need. Did you experience that? Did you find out that there were certain things, as far as your cancer care, that your insurance did not cover that was completely surprising to you?

Loriana Hernandez-Aldama: I can't think of specific items, but I know many times along the way, even at a world-renowned institution like Johns Hopkins for my initial treatment, that I had to have doctors go and do appeals for me when I was denied coverage. And then going through my breast cancer treatment as well, saying, “Hey, this patient has a lot of baggage, a lot of comorbidities, she needs coverage for this, she needs home health care.” I ended up with my double mastectomy needing five months of home health care, and initially they fought it until they realized that I had an open wound that wouldn't close for five months, and we're in the midst of COVID. So, I had to have a lot of doctors in my corner — as I say, in my pit crew — and [going] to bat for me, but I also had to push them to go to bat for me, too. 

So, I really think that I encourage patients to know that you have to be an equal partner in your own success, and you have to push the doctors to say, “Hey, I know you're busy, I know you're consumed with work as well, but I need you to fight for me on this,” whether it's the fail first, where you have to fail on a certain drug before you can get another one that's more effective and fewer complications for you. Whatever that is, you need to not let up and push for those appeals, and make sure they see-through. The problem is, those appeals take a long time. 

Jamie DePolo: Yes. Yes. Joanna, I want to go back to you. Loriana kind of touched on two of your issues, which was care being denied coverage by insurance companies, and also, you mentioned about, maybe your coverage isn't as good as you think it is. So, what sort of solutions do you, when you're at Triage Cancer, what do you suggest people do or what are some solutions to those issues? 

Joanna Morales: Well, with respect to not having adequate health insurance coverage, we really want people to understand how important it is that they know all of their health insurance options. Even if you get health insurance coverage at work, there might be other options available to you like a marketplace plan. And if you aren't comparing all of those options, then you might end up in a situation where you're paying more than you need to, or you have that inadequate coverage that has those higher out-of-pocket costs or doesn't cover your providers or your prescription drugs. So, we really drive home the importance of knowing all of your options, and then effectively comparing them. 

And at triagecancer.org, we have a lot of information to help people understand the various options that might be available to them, based on where they live or their situation, and then give them tools to actually help them compare plan options, even down to how do you do the math, to compare plans and figure out which is actually going to cost you the most by the end of the year. So, we have everything from five-minute animated videos to worksheets on how to do the math to compare plans. So, we think this is really the number one way to mitigate financial toxicity, so we have a lot of resources to help people navigate this. 

We also feel that way about appealing denials of coverage. I often talk about the external appeals process as the best-kept secret of our healthcare system. So, for most people that have private insurance, whether it's an individual plan or through their employer, if you do face the denial, you can appeal that decision within the insurance company, which is called an internal appeal, but you also have the right now under the Affordable Care Act to go outside of the insurance company, if they still say no, to an independent entity that's going to look to see whether or not the care that your healthcare team is prescribing is medically necessary, and if that independent entity says that it is, then your insurance company has to cover it. And those are called external appeals, and as I mentioned, about 50% of the time, on average, across the country, those appeals are overturned, which means about 50% of the time patients are then getting access to the care that they need. 

So, what's terrifying about that process is that no one knows it exists. There's data that is from 2019, that shows that just with marketplace plans, more than 40 million claims were denied, but only 0.2% of those denials were appealed, and not even to the external appeals level, but just to the internal appeals level, so that's 99.8% of claims that aren't being appealed. So, to me, that says, patients are either not getting access to the care that they need, or they're paying for it out of pocket when they really shouldn't be, the insurance company should be covering it. 

So, for us, it's kind of a soapbox issue, in case you can’t tell [laughing], so we do have a lot of resources to help people understand the appeals process based on the type of insurance that they have and to get through the appeals process, but Loriana really hit the nail on the head. It's so important to communicate with your healthcare team, both before getting access to care and afterwards, if you face the denial, to make sure that they're participating in the process of the appeal because there's a reason they prescribed that treatment. So, when you go through the appeal, they're going to be the ones to provide you with the valuable information about why it's so important that you get access to that particular type of care. So, they are a very important ally in the appeals process. 

Jamie DePolo: Oh, yes. Definitely. I am curious, for the external review process, is that process similar for all insurance companies? I mean, is there some sort of known external entity that these appeals mostly go through, or is it dependent on someone's specific insurance?

Joanna Morales: It is somewhat dependent on someone's specific insurance, but it's more dependent on where you live. So, if you have private insurance, like through the marketplace, or an employer, generally, it's going to be through the state insurance agency, but on our state resources page at triagecancer.org, we actually have the entity that handles this process for each state. So, you can find that information easily. 

Jamie DePolo: Excellent. Thank you. And I'm also curious, does a patient have to do what you called an internal appeal first before it goes to an external, or can they start with an external appeal? 

Joanna Morales: So generally, you need to start with the internal appeal, but that's a great question because Loriana also mentioned how sometimes appeals can take a long time. Through this process, specifically, there are very specific deadlines in which you need to appeal and then in which they need to respond. So, generally speaking, if you're dealing with a non-urgent medical condition, they have to respond to you within 45 days, generally, but if it's an urgent medical issue, like you need care immediately, you can actually file the internal and the external appeal at the same time, and they have to respond within 72 hours. It's important to understand the process for your insurance plan because if you're in a situation where you need access to urgent care, and they're denying coverage, that's how you can get through the process much more quickly. 

Jamie DePolo: Oh, yeah, that's very valuable information. Loriana, you wanted to add? 

Loriana Hernandez-Aldama: I wanted to add, and I think this is great information, it’s awesome. Because, at ArmorUp for Life, I've often called Joanna and said, hey, talk to me about the second opinion. Talk to me about this, because what we do is help patients. We try to transform patient navigation and help patients navigate the whole process from the day of diagnosis, and help them become their own hero and navigate for themselves. So, we give them advice on what calls to make and we try to make some calls and pave the way for them. 

But some of those problems...it shouldn't – and this is just me on my soapbox – that it almost shouldn't get to this point that we have to fight to get things overturned. When you're picturing a patient in the midst of a fight, if you’re inpatient you're fighting for your life, you're exhausted, you're trying to figure out who's going to cover childcare. Who's going to get meals to your family, how you're going to pay your bills, how you're going to pay your mortgage, and oh, by the way, somewhere in the midst of that and throwing up, and everything else that's coming out, you're going to go do an external appeals process. I love that it exists, and I love that Joanna mentioned it, but my goal and dream is that we can make the process better and easier for patients because when you're talking about...when you throw in the whole curveball of health literacy, and all of that, it's so hard to even think straight, to even file this when you're in the midst of...everything's chaos, that's what worries me. 

Even helping my sister, having been through this twice, and trying to get her a second opinion, or get pre-authorization for tests that were initially denied that she needed. Many breast cancer patients also start on a chemo drug that is approved by the FDA in 1994, but there is a new chemo drug that was approved in 2005, but you have to fail first and have issues with it, which she almost had a heart attack, so now she graduated and got the other drug, but what frustrates me is all of this whole process that patients have to go through in the midst of trying to fight for their lives, get a better drug that's more effective, less toxic.

And then in the midst, they're trying to worry about the financial toxicity. So, it is so hard on a patient, and that's why we have organizations like Triage Cancer and ArmorUp for Life because we know you can't do it alone. You have to wave the flag. You have to ask for help because there's so much, not just on you, but on your family and the caregivers, and trying to just get that patient on the path to success with the proper support system is so important, and the financial burden...it just...that can affect the patient's outcome. 

If somebody is not involved, whether it's the patient or the caregiver, that can affect whether they get that scan, whether they get the pre-authorization or the second opinion, and have somebody to actually do the external appeals process. So, I love that it's available. My focus is how do we...we really need to find more ways to make it easier for patients to get these approved and minimize the cost and the burden, like more financial assistance.

Jamie DePolo: Yes. Thank you. Thank you for bringing all that up. I was thinking about that because, as you said, it's great that the process is there, but that's just one more thing that somebody in treatment then has to do and deal with and it takes time. And if you don't have a good support system, you're fighting cancer, as you said, you're trying to work, you're trying to pay your bills, you're dealing with all this emotional upheaval, it just stretches you in one more direction that you may not be able to be stretched in. Loriana, I do want to stay with you. One other problem that Joanna mentioned or issue that Joanna mentioned, was reviewing medical bills, and things on there not being covered or covered in a different way. Did any of that happen to you when you...in either of your treatment paths?

Loriana Hernandez-Aldama: Joanna was so right that we need to review our medical bills, and I was nodding my head as she was talking. And I will be the first to admit, even though I'm a patient advocate, that I had so many bills that were piled so high, that I felt like I was going to relapse from the stress. And I can tell you that I hardly reviewed my medical bills because there were so many, and it became like a full time job. 

So, trying to call and question everything, and I have memories of crying on the phone, saying I don't understand what this is. I have an education, I have a degree, and I don't understand what this is and what this is, and so really, that helped me find my purpose, to really want to help patients more because I thought if I'm connected, and I'm well educated, and I don't understand these bills, and I don't even know what to question, and I'm exhausted after my cancer battle, how are other people doing this? So, Joanna is so right, you do need to review it, and I have seen errors, and I have thought about them, and maybe have won a few times here and there, so you should absolutely look at it, but I also see the flip side of the patient saying I need help doing it.

Jamie DePolo: Absolutely. Joanna, I'll go back to you. Do you have any other strategies that patients can use? Are there services or like that anybody offers that can help patients with this?

Joanna Morales: Well, I would say there are a couple of options and strategies. The first I would say is when you get a medical bill, do not immediately pay it. Wait until you receive the explanation of benefits, or EOB, from your insurance company. So that's the document that usually has like codes, and it says, this is not a bill somewhere on the page, and it probably tells you your responsibility for what you need to pay. So, you want to take that document and just compare it to the bill that you're receiving from a provider and make sure that it matches that. 

And I'll just give you a personal experience as an example. So, I went into the doctor's office a number of years ago, and it was just for an annual checkup. So, under the Affordable Care Act, all the services I received should have been with zero out-of-pocket cost to me, so I shouldn't have received a bill at all. But the bill that I got in the mail from my provider was for more than $1,000, for a preventative office visit, and I just about had a heart attack, and then I took a breath and realized that it probably hadn't been sent to my insurance company yet, and that is exactly what happened. I waited for the EOB to come, it showed that the provider had billed, the insurance company took care of all of it, and my patient responsibility was zero. 

But then, I got another bill from the provider with a zero-dollar balance. So, if I had paid that first bill, then I'd be in a position of having to try to get that money back from the insurance company, or from the provider. So that's a situation of where things happen out of order. So, the provider bills you before they've actually waited to see what your insurance company is going to pay. And that's a good strategy to wait for the EOB, compare it to your medical bill, and see if there are any discrepancies. You don't need to know all the codes or all the things that the bill notations mean, but just knowing that they match up is actually step one, and if they don't, to talk to your provider. So, to call up your provider’s office and say why doesn't this match up, and why am I being billed, and is this the correct amount? So, that would probably be step one. 

I think step two is to enlist the help of your healthcare team in the process if there's anything that you feel like might not be correct, or you need more information about bills before you pay them. And then if you're just being denied coverage, to engage in that appeals process.

So, I know that this is all easier said than done, but these are ways that you can help avoid paying more than you need to for medical bills. But it's also a great way to engage family members and friends who are offering their help. So, even if they're just opening the mail, and comparing the EOBs to the bills that are coming in. Just matching them up and stapling them and then just reviewing them to see if something doesn't match up, just that process can provide some help. 

I think also, that there are services out there that provide help. Those services you do have to pay for, so that can be helpful and worth it if you have bills that are like tens of thousands of dollars, especially if you've had a hospitalization. If you only have a bill for $500, it probably doesn't make sense to pay for one of those services to help go through your medical bills. 

Jamie DePolo: Okay. 

Loriana Hernandez-Aldama: And you can negotiate. This is Loriana. You can negotiate too. I recently negotiated with some bills that I have still coming in from two years ago, and said, hey, you're going have to give me a lower price and break it up, and I'll pay X amount of dollars over the next 12 months, because I can't pay all this at once. And after...because I don't want it to go to collections, I don't want it to damage my credit. So, you can have a frank conversation, and somebody should be able to if you have to keep going up the chain of command, but sometimes you can negotiate a different price, and have it paid over a certain amount of time, and it's worth trying for, and it's worth doing. 

And another thing that I want to add onto what Joanna was saying about asking, enlisting your friends who say they want to help, with maybe stapling the EOB to the medical bill. So many times, people think when someone has cancer, okay, let's just give them meals. But I always say you don't need a tribe, you need a pit crew. You need different people helping you who can do different roles to successfully get you to the finish line. So, if you know somebody is good with phone calls, give them the task of the phone calls. If somebody is good with billing, give them that task. If somebody's organized, let them make a spreadsheet or a Google doc to help you keep track of things. If someone’s good with organizing meal plans. So try...when people say how can I help, say yes, you can, and put them in their lane of what they're best at, and that can also help you really streamline the process and work on how to attack it from a financial standpoint.

Jamie DePolo: Thank you both for that. I think that's such a great suggestion because, as you both said, a lot of times people think, “I want to help,” and it will either be cleaning or it will be cooking, and nobody thinks about sorting through medical bills or anything like that. So that is a great...those are great suggestions, thank you. Loriana, I want to go back to you. This sort of hidden issue that Joanna mentioned, which is work and changes in work schedules, not being able to work. You talked about that at the beginning, how that was an issue for you because you were in the hospital for a year, so how did you deal with that? 

Loriana Hernandez-Aldama: Well, my HR department, even though I was at a wonderful company, did not inform me, I lost my health...my life insurance that I could have maintained. They did not inform me of what was going on and granted, I was not really of sound mind as well. So, nobody really told me. I had somebody reach out to me while I was in the hospital, when I put on social media, I would be there for a year. They said, you need to apply for disability and I said, well, I've been here in the hospital for three months, nobody's mentioned that to me. It didn't dawn on me, I didn't have disability through my work. It was just...everything was chaotic. All I knew was I had a 25% chance of survival. So, you can imagine trying to get paperwork in place and dealing with that was so overwhelming. If somebody walked me through the process at the time. 

Now switching gears, for my sister, she’s working at a preschool, I reached out to Joanna and I said, now here's what I know, and here's how we help our patients but tell me this, and Joanna can jump in on what the disability...what is available for patients, and it can take six months to get backpay, and how you get the disability but it's worth looking into. But there's other times that you can't get financial assistance, for let's say, reconstructive surgery. Well, if you're having breast reconstructive surgery, that's not considered treatment, so you can't get help, but yet, you're going to be laying in bed and you can't really do anything. For me, I couldn't leave my house during my breast cancer for five months. So how do you earn an income? So, for me, it was a constant struggle of how are we going to pay our bills. 

Going back to my sister working at a pre-K, apparently, and Joanna can jump in on, there's now some laws in place regarding COVID if you're unemployed, and you can't work because you're immune-compromised. And these are...this is the time when I direct somebody to just...Joanna and say okay, help them in this area. When we have patients come to us and we navigate their whole diagnosis and just getting them in with doctors, but from that standpoint, it really took friends reaching out to me saying you should do this, but nobody within my HR. So, the first thing when you're diagnosed, reach out to your HR, but also have somebody who's not in the midst of the fight on that phone call with you, because I don't remember what they told me, but nobody helped me, and I ended up losing in the long run. 

Now I have no life insurance, and nobody wants to insure me, so it's really taken a toll long term, just with the financial toxicity from all of that, from the bills to losing life insurance, having trouble getting health care coverage, on and on, and it snowballs. So, I encourage you, reach out to your HR department, but also, I would love for Joanna to jump in where she and I have discussed the disability options and also taking time off work because how are you going to go to work if you need a double mastectomy?

But it's hard to get financial assistance during that time, there's a lot of times you can't get help. 

Jamie DePolo: Right. Joanna, I am going to jump back to you, as far as strategies because again, based on Loriana’s story, it sounds like much of the burden then goes back to the patient, like the patient has to reach out to their HR company, the patient has to sort of initiate this. So, what are some strategies that you would advise?

Joanna Morales: It, unfortunately, does fall on the employees who've been diagnosed with cancer to figure out what steps they need to make it work. And the sort of short answer to the question is, Triage Cancer does have a legal and financial navigation program that is free, where you can go to our website and fill out a form to sign up for an appointment to talk to one of our staff, who are attorneys, and get an understanding of how the laws apply to your situation based on where you live because what you have access to is going to depend on what federal and state and local laws apply to you and your employer, and what the employer-specific policies are around things. 

Like does your employer offer a private disability insurance plan that might be available to you? So, kind of understanding the full landscape of what your rights are, and the options and benefits you have access to, can prepare you for then approaching your employer, to let them know what your needs are, and so that you're prepared to walk into that conversation. I think a lot of people don't know what their rights are and tell their employer, oh, I need to take time off work, and then the employer either says something like, oh, don't worry about it, you know, we've got you, or the employer says no you can't. 

And in both of those situations, those are not great things to hear, because later on, the employer might not have you anymore. They might not be on board with you taking time off, and the fact that they're just saying no to you is also not something they should probably be doing under the law. So, knowing what the right answer should be from your employer, can be helpful to the situation. Again, it puts one more thing on a patient's plate, but you're much more likely to get access to what you need if you know what your rights are, and we can help explain what those options are. 

Loriana Hernandez-Aldama: Again, at ArmorUp for Life, we help patients navigate. So recently, we were on a call with a family. The man who was diagnosed with AML leukemia was three weeks away from being eligible for FMLA because he was at a new company. His wife, who was his caregiver, was three months away from being at a company for one year to be able to take time off. So, they were trying to figure out how do we keep this secret and have him fight for his life, and get all the tools in place that he needs, and all the support, and we were trying to help him navigate and really communicate with his HR and see what they can do to, you know, could they really work with him until he got to that point, and they did work with him but it is a fine line.

Joanna had mentioned the word prepare, and you know, my book is called Becoming the Story: The Power of PREhab, and when I talk about PREhab, that is preparing your body for illness, and I have the three-P protocols: prepare, present, prevail, and that includes preparing financially. So, I always say we have to prepare our bodies for illness and prepare ourselves for illness, so we can present well to our medical team, and be better positioned to prevail. And that PREhab and prepare is not just diet and exercise and lifestyle, but it is financial preparedness. 

So, like Joanna was saying, know what your rights are, know what you have available to you through your HR, and what would you do if your world flipped upside down tomorrow? What rights do you have? What is in place for you at the company, you're working for, and how would you handle it? A lot of us, myself included, you don't look at it until your world flips upside down, and then you're looking at it through a foggy lens, while you're sick and not thinking clearly. So, this is a great time when you're listening to this to go back to the paperwork you have from HR, go online and look and see what is actually available to you and your family members. 

Joanna Morales: A really important example, where most people are familiar with the FMLA because there's lots of reasons you might take time off work under the FMLA, but that patient’s example, as not yet being eligible for the FMLA because he hasn't worked there long enough, is exactly why it's so important to know what else is available. So, knowing that the ADA might also provide him access to time off, as a reasonable accommodation, is another way to get access to a benefit, like taking time off work that isn't available under the FMLA for him. So, that's why we really encourage people, not to just sort of accept the first piece of information that comes to them, as the total truth, but to make sure you understand all of your options so that you can make the best-educated decisions for your best path forward.

Jamie DePolo: Thank you, and it sounds to me, just from what you've both said that the instant somebody is diagnosed, certainly you're going to talk to your doctor and talk about treatment plans, but the next thing you should do is really talk to somebody, as you mentioned, Joanna, maybe somebody at Triage Cancer, an attorney, who can talk to them about their rights with their employer, because it sounds like that's going to be hugely important in helping with any sort of financial issues. Does that sound right to both of you?

Joanna Morales: I would just say that if it were up to me, I would hope that every newly diagnosed patient, got access to some of this information. I can only imagine how overwhelming it is to process all of the information that comes at you in that moment, but at least knowing that there are some decisions that need to be made, and information that needs to be learned, and where to go for that information, that is going to provide accurate information, is so incredibly important. Because we see people make decisions in a crisis moment that has an impact on what they have access to down the road, and then they're calling us after they've made those decisions, and it's hard to backtrack some of them. 

Jamie DePolo: Okay. Thank you. Loriana, did you have something to add?

Loriana Hernandez-Aldama: The only thing I was going to add is that we talked so much about the employer, and yes, there's so many cases and patients who come to us who come from great companies, who have great coverage, and they just need to familiarize themselves like Joanna said. But then where my heart breaks is those who are self-employed, and maybe they're in the marketplace, so they don't have the same type of services available to them. It's not like they have some package at their company, they're running their own company, and those are the people who I also worry about because, again, that's where Joanna said there's other ways that you have to go around things to get the services you need, because you may not have them available if you're your own boss, and you're running your own company. 

Jamie DePolo: Okay. Thank you both. Now, I know that Triage Cancer has a huge amount of excellent information on paying for care, insurance issues, legal rights of with people with cancer, and more, but I'm wondering if there are other resources that either of you would recommend and Joanna, I'll start with you. 

Joanna Morales: Well, since we're on the topic of employment, I would say making sure that you have access to an employee manual, if that's something that is available to your employer and trying to track down some of those benefits that you have access to because there are many employers that go above and beyond the bare minimum of what the law requires them to do, and so what's going to be available to you is specific to your employer, and you want to know what they're offering. 

I would say if you need to take time off work, and you're thinking about applying for disability insurance, you may live in a state that offers state disability insurance. So, we have the state agencies that offer those programs on our website, and then if you're interested in applying for federal disability benefits, the Social Security Administration is where you would go to do that, and their website is ssa.gov, and their phone number is 800-772-1213. 

Jamie DePolo: Thank you. Loriana, what about you? Are there other resources that you have found very helpful in your journey?

Loriana Hernandez-Aldama: Well, I would say some of the other resources I found, is actually going where you are seeking treatment and ask for the patient navigation department, or the patient navigator department, whoever works in the patient navigation department. Not all hospitals will have it, but recently, I had an issue where I felt like I wasn't being heard, I wasn't getting in with the doctor, and I'm new to the area, and I know that there are patient navigators. 

I also know that they're very busy, and they're overloaded with work, but I had to move my way up the chain, and get somebody, and found out, hey, they actually have a department of paid patient navigators. And I sent an email and I called them and said this doesn't make sense to me, this isn't working the way it should, and I need help with some answers, and I'm a patient navigator myself, and I don't understand this. And they took time and helped me, and have stayed in touch with me and helped me out. So, again, like Joanna says, there's always another way to go around things to get answers. 

So, you can always reach out to ArmorUp for Life, and go to our website and reach out. We help patients navigate through this process as well, but also, one way we would say is let's call the hospital, where you’re actually seeking treatment, or getting treatment, and see what help they have available to patients because more and more hospitals are starting to establish these departments so they can help patients. We're not there yet. There's not everything that a patient needs, but to get them in the right place to get some answers, it's a good place to start.

Jamie DePolo: Thank you both so much. This has been so incredibly helpful, and I'm so grateful to both of you for taking the time. Thank you.

Loriana Hernandez-Aldama: Thank you. 

Joanna Morales: Thank you.