2025 HCL Patient Seminar Session: Understanding Health Insurance to Reduce Financial Toxicity
Pre-recorded webinar session in collaboration with Triage Cancer, a national, nonprofit organization that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers.
Speaker: Kathryn Strobach, Triage Cancer
Click to view a recording of Ms. Strobach’s Presentation >>
Transcript of Ms. Strobach’s Presentation
Thank you so much for joining me today.
My name is Kathryn Strobach, and I'm a staff attorney at Triage Cancer, and I'm here to talk to you about reducing financial toxicity by understanding your health insurance. Just a little bit about our organization, if you are not familiar with us, Triage Cancer is a national nonprofit organization that provides free education on all the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers.
Now, a lot of people ask us what's legal about cancer and why is a lawyer here talking to us about these things? But the reality is pretty much everything that happens regarding cancer care is impacted by the law. Things like who's funding cancer research and do you have access to treatments that you need?
Do you have access to health insurance to pay for your care, and how do you take time off of work? All of those things are legal issues, and they are also things that can contribute to something called financial toxicity. So, the reason we're here as an organization is because if all you needed was a law, you wouldn't need law enforcement, you wouldn't need lawyers.
Honestly, we wouldn't need a court system at all. But what you need is education and navigation to make sure that you understand your rights and how they apply to your situation. So that's why we have developed a whole bunch of free resources for you. Everything is available on our website, TriageCancer.org.
That's where you can sign up for our educational events, like our conferences and webinars. You can get our hard-copy materials—you can download them or order them to have them sent to you for free—or view them online. We have things like quick guides and checklists and practical guides, and we also have animated videos that you can watch.
If you're wondering where to start—and I hope you do go to our website and take a look around—check out our Resources by Topics page, because if you click on any of these circles, you are going to get all of the information that we have on that particular topic. And pretty much everything I'm going to be talking about today can be found on our Health Insurance topics page. Now, because the law is different depending on where you live, pretty much every single state has its own rights and protections that they provide to the citizens in their area. We have our Resources by Location page, where you can click on your state and get all the information that we have gathered about health-related legal issues in your area. Another option is our State Laws Chart, and if you're looking for information about specific laws such as fertility preservation in your area, that's where you can go to get that information.
Now, turning to today, the things we're going to be talking about are avoiding financial toxicity, understanding and using your health insurance, and then we're also going to talk about some tips for picking a plan and helping you save money. So financial toxicity is a term that, unfortunately, most people who are going through cancer treatment understand pretty instinctually, but it is actually a research-based term because back in 2013, researchers from Duke University discovered that the patients that they were treating were being impacted by all the financial issues that came up after a cancer diagnosis, and that the impact on their patients was so extreme that they were having an impact that was the same, if not sometimes worse, than the actual physical toxicity of the cancer that they were dealing with. And what they discovered is that the reason the financial impacts were so hard for patients to deal with is because they came from so many different places.
Health insurance status—things like if their patients had adequate coverage and understood how to use it—as well as employment changes, which includes things like were their patients able to work through treatment, or did they have to take time off? And what kind of benefits did they have available from their employers to help them through their treatment?
And then the reality is life doesn't stop just because you have a cancer diagnosis. People get married, divorced, and go off to college. Sometimes they end up having to move. And all of these things put together can either help you get through with as little financial impact as not, or it can make things really hard.
And today we are going to concentrate mostly on health insurance data. So, one of our resources that I have here is a Checklist to Avoid Financial Toxicity. Now, this isn't exactly what it looks like if you were going to go to our website and look at it, but these are all the different parts. And like I said, we're going to be concentrating on those first two columns on the left when we're talking about insurance coverage—how to understand your insurance, what all these things mean.
So hopefully, when you go in to look at our checklist, you understand the terms and know how to use it to your biggest advantage. So, first things first: where do we get health insurance? And it's helpful to think about the options so that you can consider all the options that might potentially be available to you.
Now, here in the United States, most individuals get their insurance through their employer. But as you can see from our pyramid here, we also have a lot of people who get insurance through government sources such as Medicare and Medicaid. And then there on the top are the individual policies—people that buy policies through the Marketplace or go out there on their own and get a policy with an insurance company.
And the reason we feel so passionately about talking to people about these issues is because we don't want you to be in that 26% of people in the United States who have avoided getting care or treatment because they were unsure of what their insurance covered. It's so important that you know how to use your health insurance.
You get the care that you need when you need it, because delays to your care can not just endanger your health, but also can make things more costly for you in the long run. So when we're talking about insurance, it's good to remember that there's actually two different kinds of benefits that we're talking about.
On one hand, there are the medical benefits—things in your insurance that your insurance covers, like visits to doctors or hospital stays. And on the other hand, there's pharmacy benefits, and that refers to drugs that are taken by you at home, either orally or sometimes injectable medication.
And when it comes to insurance companies themselves, a common term that we hear is whether or not something is covered or not covered—if it's in-network or out-of-network. And so, what that means is that insurance companies contract with different providers—your doctors—or even facilities, like if you go to a lab or a diagnostic imaging center or a particular hospital for care. They contract with these different providers, and that creates a network.
Within that network, they have set rates, where they have determined what the allowed amount is going to be for the covered services. As long as you stay within your insurance plan's network, things should be covered as long as it's a covered benefit under the policy. Where people sometimes run into trouble is not understanding that their network exists or how it works, and then you go outside of the network and you see a provider that is not contracted with your insurance company.
So when it comes to your costs, there are costs to have insurance, and then there's costs to use your insurance. And the vast majority of people mix up these terms. So, we're going to spend a little bit of time going over them. And I think the reason for that is these are terms that we hear all the time,
We think we know what they mean. But in reality, it's easy to get confused. So when it comes to your cost to have insurance, that's what we mean by your premium. That is a fixed dollar amount that you pay every single month of the year in order to just have insurance—have the policy available when you need to use it.
And then when it comes to cost to use your health insurance, the first thing that you need to be aware of is whether or not you have a deductible on your policy. And what that is, is a fixed dollar amount that you have to spend every single year. And once you reach that amount, your insurance will kick in and start to cover the cost of your care under the terms of your policy.
Your copayment is the amount that you pay every single time you get care, and that's a fixed dollar amount. Now, a lot of confusion for people comes with not understanding that you might have different copayments for different types of services. So, for example, if you have a $5 copayment when you go see your primary care physician, you might have a higher copayment, like $25, to go see a specialist.
Co-insurance and cost share are two terms that mean the exact same thing, and this is a set percentage that you pay every single time you get care. And again, this is an area where sometimes you can have different percentages depending on the type of care that you're receiving. So, for example, for a routine blood draw at a lab, you might have a 10% co-insurance rate that could apply.
But if you have a hospital stay or a CT scan that you have to get, you might have a 20% or 30% co-insurance that you might have to pay. But then the last one here is really important, and that is your out-of-pocket maximum. That is a fixed dollar amount that, once you have spent that amount of money on your out-of-pocket health insurance costs, your health insurance is going to cover 100% of your care for the remainder of that year.
Now, a lot of people mix up the deductible and the out-of-pocket maximum, but once you reach your deductible, what that means is that your insurance company will start paying for care. But you very well are going to have additional expenses until you reach your out-of-pocket maximum. It's when you reach that out-of-pocket maximum that you won't have to pay anything else for your care.
Usually the things that go into reaching your out-of-pocket maximum include your deductible, your copayments, and your co-insurance. Not always—and we're going to talk about how to watch out for some of those exceptions in just a little bit. First, I'd like to introduce you to a patient named Michael.
Now, Michael unfortunately got into an accident, but the good news is he has a Marketplace health plan, and on his health plan, he has a deductible of $2,000. He has a co-insurance of a 70/30 split. And so, what that means is he's going to be responsible for 30% of his medical expenses after he meets his deductible.
And then last, he has an $8,000 out-of-pocket maximum, which is the most he will have to spend on medical care under his plan that year. So after his accident, Michael has a $72,000 hospital bill, which is a lot of money. The question is, though, what's he actually going to pay? And the way you figure that out is, first you look at your deductible.
So, Michael's deductible here means he's got to pay that $2,000 first. Then there's $70,000 left. After that, he has to figure out his 30% co-insurance amount, and that leaves $21,000 of additional expenses. Now, Michael doesn't have $21,000, so the good thing is that he has an out-of-pocket maximum on his plan.
So, what that means for him is that he pays his $2,000 deductible, and then after that he only has to pay an additional $6,000 of that $21,000 co-insurance amount, for the total of $8,000. Now, I realize I just said only $6,000. $6,000 is a lot of money. $8,000 is a lot of money—it certainly would be for me—but it is definitely better than $72,000 if he was uninsured.
If you like this example and you want to hear it again, you can actually watch our animated video. You see the little graphic that goes along with that video here on the screen, and you can hear all of this again. So I promised to tell you a little bit more about out-of-pocket maximums, because there are some details that you need to know.
The first is that there could be a separate out-of-pocket maximum for out-of-network services. I know that's a lot of outs, but some plans covering-network services, obviously. Some plans do provide a percentage of costs to help pay for out-of-network services.
If you have a plan like that, understand that it's very likely that if you choose to go out of network and see a provider that's not in your plan's network, you're probably looking at a separate out-of-pocket maximum. Another example of the way there can be some differences is with individual versus family plans.
If you have a family plan, each individual member of the family is going to have their own out-of-pocket maximum. But in addition to that, there's going to be a family out-of-pocket maximum, which acts as a cap— the most that you will have to pay as a family for medical expenses during that year. Now, like in Michael's example, he had a Marketplace plan. Because of the Affordable Care Act and the consumer protections in the Affordable Care Act, one of the greatest protections of all, in my opinion, is that all expenses that you pay for your deductible, copayments, and co-insurance—for both medical care and drugs—every single penny that you spend for those things goes into your out-of-pocket maximum. Now, the reason that's so important is because unfortunately that's not always true for employer plans.
Some of them had some carve-outs, so the money you spend towards your deductible might not go towards your out-of-pocket maximum. Sometimes they don't include your copayment as well, and sometimes they have a separate out-of-pocket maximum for prescription drugs. So the bottom line is you really need to review your policy now that you know how to look out for these things, because again, most of us get health insurance through our employers here in the United States and see what the potential carve-outs could be toward meeting that out-of-pocket maximum—to help you budget and plan accordingly. Now, prescription drug coverage on your plan comes with its own set of vocabulary.
And the biggest term that you need to know is the formulary. The formulary is the list of drugs that are covered under your plan. Those are the things that your plan is going to pay for. Pretty much every single type of insurance breaks its formulary into what's called payment tiers. And as you can see from the example here, usually tier-one drugs are going to be the cheapest generic drugs available, and you're going to have set copayment amounts—or sometimes people pay $0—for the drugs in that category.
But then as you work your way up the tiers, things get more expensive, and you start potentially having higher percentages or higher set copayments that you have to pay. Now, most of the time, if a drug is not on the formulary, it's not going to be covered. But the reason I say most of the time is because you have the ability to make what's called an exception request.
If you need a drug that's medically necessary and your insurance plan doesn't cover it, you can ask for a formulary exception. If you have a plan where maybe it covers your generic version but you need the brand name, you can ask for a brand-name exception. And then other times you might be able to get a tier exception, which is where you get a drug covered under a different payment tier because it's a necessary drug for you.
Now, unfortunately, there are other ways that plans can sometimes impose restrictions on prescription drug coverage besides deciding the list of drugs that are covered. One of those things is called prior authorization, where you have to get permission in advance of filling your prescription.
You also might face quantity limits. Sometimes it's not an overall quantity limit, but it could be that you have to get your drugs through mail order in order to get the most out of your prescription coverage versus going to a retail pharmacy. And then sometimes they even include something called step therapy.
And what step therapy is, is when they require that you start on a lower-tier medication—usually one that's less expensive—and you have to try different drugs or “step up” to the drug that your doctor thinks you should take. Now, I will tell you on our State Law Charts, we have a whole chart just on step-therapy legislation because this has been a pretty hot topic in recent years, as well as, I should say, on prior authorizations too.
A lot of states are trying to build in protections for different patients to help them navigate things like prior authorization and step therapy. Now, when it comes to prior authorization, it's such a common thing that we get questions about, so we just wanted to spend a little bit more time talking about exactly what that means.
Most people understand that all that means is—it's in the name—you have to get approval for something before you get care. But the pitfalls that come with prior authorization are, first of all, understanding that's what you have to do, because it can come with a lot of different names.
Insurance companies can call it different things like advanced approval, pre-auth. Now, they all might seem obvious, but not necessarily. So you want to learn the term that your insurance plan uses for prior authorizations to make sure that you know it—so it clicks if somebody says to you, “You need to get this before you get that care.”
The other major point of frustration with prior authorization requirements is that insurance companies have them, but they don't tell you all the different things that you have to get prior authorization for. In other words, they're not going to give you a list. We do know from a lot of experience that very commonly, if you know you're getting admitted to the hospital or you're having surgery, or getting some sort of diagnostic imaging study like a CT scan, or a specialty drug, these are the things that almost always seem to require prior authorization.
But the bottom line is, even if your healthcare providers are helping you get it—and a lot of times they do—it's your responsibility to get it. So ask early and often, because you, as the policyholder, are going to be responsible for the bill if you fail to go forward with that important step and get the care that you need without going through that process.
Another thing that can frustrate people with prior authorizations is they're not always a guarantee of coverage. One of the most common reasons that we encounter for that is, sometimes people get the prior authorization just like they're supposed to, but then their doctor says, “Great, I can't see you for another six weeks, so, we'll schedule you then.” And so the longer the time that goes by between when you get the prior authorization and when you actually get the care, things can sometimes change. So, if you have experienced a delay between when you get your prior authorization and when you go get those services, definitely reach back out to your health insurance carrier if you can, and make sure that your prior authorization is still good.
And even ask your healthcare provider, “Listen, is there anything you're seeing here in my chart and my history that might change this? Should we still be going through with this?” Have those conversations. It's really important. Now, the next thing we're going to talk about a little bit is appeals, but know that prior authorizations, like other types of coverage denials, can actually be appealed.
What that means is that when you get a denial of coverage or your insurance company says no to something—sometimes they call it an adverse benefit determination—you get to challenge that decision. You don't have to take no for an answer. And the first step, if you do get a no from your insurance company, is to make sure that you understand the type of plan that you have.
The process to appeal a denial is going to be a little bit different depending on the type of plan that you have. Here in the United States, since most people have either an individual plan or what's called a funded group plan through their employer, I'm just going to spend a little bit of time letting you know what this process could look like for you.
The first step, if you decide to file an appeal, is going to go through the internal appeals process. That means you are going to go back to your insurance company and ask them to reconsider their decision. Again, you can do that before services are even received or before you go get that medication if your pre-authorization gets denied. Or you can do it after services are received, if you suddenly get a bill letting you know that your insurance company didn't cover anything. So either before or after services, you can ask your insurance company to reconsider. Now, each company has its own rules, but what we know is that generally patients are going to have at least 180 days to submit an appeal.
One thing I want to highlight is that the timeline for giving you a decision is going to be different depending on if this is a before-treatment authorization—its timeframe is only 30 days—versus if it's after treatment that you've already received, the insurer has a little bit longer, in the form of 60 days. But the most important thing for a lot of people, especially those going through cancer care, where time is of the essence, is that you have the right to an urgent appeal, which means that they have to give you a decision within 72 hours. Now, if you go through that internal appeals process and your insurance company says no again, and you have an individual or funded group plan, that is not the end of the road. You have more options.
At that point, you can go to the external appeals process. It's called external because you're going outside your insurance company to ask for review. External appeals are done by independent medical review organizations. They do not work for your insurance company. They work for themselves and they issue binding decisions.
Often, they are run through your state health insurance agency, but sometimes there is a different process under the federal Department of Health and Human Services that your plan can use. Something that a lot of people want to know: is it worth it? Because sometimes the state process, or if they have a contracted organization that they use to do these services, there can be a small fee.
I say small—a fee up to $25 can feel like a lot of money when all those medical bills are piling up. But what we know is that those who go through the external appeals process—about 60% of them—succeed, and they end up getting the care that they need. So I hope that gives you some encouragement to consider doing that.
During the external appeals process, the timelines are a little bit different. You have only up to four months from when you get that internal-appeal denial to file that external appeal. After that, they have to give you a decision within 45 days. Again, that decision is binding, which means that both you and your insurance company have to agree to accept it.
It's worth highlighting—especially in the cancer context—that you have the right to request an expedited external appeal for urgent medical matters. Even more important to know is that you can ask for an internal and external appeal at the exact same time if it's an urgent matter, and request a decision within 72 hours.
That's how you can shorten that timeframe to get a decision in order to hopefully get the care that you need now. Now that you've gone through step one and you've figured out your insurance and the steps that you have to take, and the timeframe that you have to do them in, you've got to figure out the reason for the denial.
Very commonly in the cancer context, people either get denials for things that are “not medically necessary”—we didn't highlight that one here, but it's actually a pretty common reason. Sometimes you might get a denial because they're saying it's experimental or investigational, or for whatever reason you're not eligible for that benefit.
Very common in the cancer context because you're having to get additional screenings that typically aren't considered medically necessary for your age or gender. And then sometimes they just try to say it's not a covered benefit at all. So what you need to do then at this point is contact your insurance company to get a detailed description of that denial.
And then also, if you don't have it already, get your Evidence of Coverage, which is your full plan benefits language—sometimes that's called your policy booklet. Next, you need to gather your evidence. Pretty much, that always includes some sort of demonstration about why that service is medically necessary for you.
This is where your healthcare team can be your best ally. They can help you get letters of support, help you get access to test results that you might need, or additional medical records, new information in the form of medical literature or studies— all sorts of things that they can help provide to you.
You can also provide your own narrative explaining why this type of care, or why the care that you've requested, is so important. It can be really challenging to stay organized during the process, because health insurance appeals can go on for several months sometimes, and we don't recommend the sticky-note method.
I know I personally am a fan of it, but I don't recommend it because those little notes get lost. That's why we have a Health Insurance Appeals Tracking Form that you can use. Not only does it help keep all the information about who you talk to, when you talk to them, and what you talked to them about, all in one place; sometimes, when you're going through this, it can be very stressful, and it can help to have a written reminder of the questions and basic information that you need to gather during any phone call.
Just something that I want to mention, because a lot of people get this confused, is the idea of a peer review versus an external appeal. A peer review is something that your insurance company can do during the claims-adjusting process, where they hire a doctor or a medical expert to actually talk to your treating physician, or review medical records—or sometimes both—and then they give your insurance company an opinion about whether the medical services your provider wants to give you should be covered.
That is completely different from an external appeal. Sometimes people think, “This other medical expert looked at my case and decided it shouldn't be covered,” but that's not the same thing as going through the external appeal process we just talked about, because the external appeal process is exactly that: external—outside your insurance company—which means that a doctor whom your insurance company did not hire is actually looking at your situation and giving a decision. Again, external appeals are binding; peer reviews are not binding. A great example of something that happens during the peer review process is your insurance company will hire a medical expert.
Maybe the medical expert they hire is a dermatologist, but you're being seen by an oncologist. I'm not kidding—this actually happened. This dermatologist will interview your oncologist and be like, “Yeah, I don't think that this next level of care is required.” The fact that the expertise of the peer-review doctor and the treating physician don't match is a great reason to appeal or challenge that decision.
If this happens to you, ask questions about who this doctor is, where they're licensed, and what their area of specialization is, to help equip you to challenge that decision at the internal and then the external level. The biggest hurdle to people taking advantage of those consumer protections provided by the appeals process is just knowing that it's something that you can do.
Unfortunately, based on this pie chart, very few people did it—and that's largely because of knowledge. Now you know about it, and I hope that you can do it if it happens to you. Please know that we are here to support you if you have to go through a health insurance appeal. We have all the resources gathered on our topics page about health insurance.
There's a whole section just about appeals. We also have an interactive module on CancerFinances.org because, by way of example, we talked a little bit in more detail about those individual and funded group plans, but our appeals module can walk you through. It will ask you questions and help you get to information about different types of plans if you have a different kind of insurance.
Something I'm really excited to tell you about is a new resource that we just developed in collaboration with Counterforce Health. It is our Appeals Navigator, and this is an interactive resource that you can go to, and it will actually help you write your health insurance appeal. Coming soon, I'm also excited to tell you we're going to have an even more detailed state-specific toolkit that you can use to navigate the process in your area. Okay, so now we are going to turn to enrollment. I'm so happy I'm talking to you in the fall.
Here in November, we are in the middle of Medicare open enrollment. We're also in the middle of Marketplace open enrollment, and a lot of employers do their open enrollment in the fall as well. So a lot of you are having to make big decisions about your health insurance right now. Again, we are definitely here to support you in that because, when you're comparing plan options—whether you're looking at different employer plans or considering different Marketplace plans, Medicare plans, what have you—the process is going to be relatively the same.
Here again, as an example, we talk to people all the time who are trying to decide between different plans, and they're trying to understand: How do I figure out how much this is going to cost? As a general rule, what we try to encourage people who are going through cancer treatment or have another serious health condition is: assume you're going to reach that out-of-pocket maximum and use that as your baseline to help figure out how much this plan is going to cost.
So in this example, we have somebody who's shopping for Marketplace plans. If you're not familiar with the Marketplace, they tier their plans by different metals. Here we have someone who's comparing a Bronze, Silver, and Platinum plan. Usually, the way these work is that the Bronze plans have the lowest monthly premiums but the highest out-of-pocket maximums.
The Platinum plans tend to have the highest monthly premium but the lowest out-of-pocket maximum, and the Silver (and then there's also Gold) plans are in between. The question is: How much are each of these plans going to cost you over the course of the year? I promise you it's not a trick question—we don't do that here.
You have to actually do some math. But the good news is that the equation is actually really simple. All you have to do is take that monthly premium cost and multiply it by 12, and then you add it to the out-of-pocket maximum, and you can know—using that simple formula—what's the most you're going to pay for health insurance that year.
As you start to do the math, the Bronze plan you figure out is going to cost you $10,400 for the year. You might be thinking, that sounds like a lot, right? That's only a $200 premium. How did I get there? Let's look at the Silver plan. That's actually looking a little better. It's only going to cost me $9,300.
The reason for that is, even though you're spending more on the premium every month, that out-of-pocket maximum is $2,000 less, which ends up making a huge difference. But then the thing that surprises a lot of people is that the Platinum plan actually ends up being several thousand dollars cheaper than the Bronze plan because the out-of-pocket maximum is so low.
That's true even though the monthly premium is exactly double the Bronze plan. So when you're shopping, don't get tempted by just looking at the monthly premium cost. You have to look at it all together. You might have noticed I skipped over the deductible, because the reality is the deductible doesn't matter in terms of determining your out-of-pocket costs throughout the entire year.
But the deductible can make a big difference in terms of your budget and planning. Having a $2,500 deductible could be a lot easier for you to meet than a $6,000 deductible when you're looking at plans. Depending on the plan options that you have, the deductible could have a practical impact in terms of helping you spread out your healthcare costs throughout the year and could be worth taking into consideration.
Of course, cost—even though it's at the forefront of everybody's mind, especially these days—is not the only thing. You cannot forget to make sure that any plan that you pick includes your providers and the facilities that you need for your care in your network of providers.
Especially when you're getting cancer care,don't forget to look at hospitals and labs and imaging centers—all these other places that you might need to go to get care. Make sure that you have a plan that includes the ones that you need. The same thing goes for prescription drug coverage. I will say that it's becoming easier to shop for these things because on the Medicare website, for example, you can enter the names of your prescription medications; you can do the same thing on the Marketplace website.
You can actually even enter in doctors' names and facilities and narrow it down to plans that include those things. But the bottom line is: you want to check the coverage that's actually being offered to make sure that you are getting a plan that actually fits your needs.
Sometimes, that means—unfortunately—you might need to pay a little bit more in order to make sure that you have the coverage to keep your cancer team in-network, because ultimately that could end up saving you a lot of money. So when you're picking a health-insurance plan, we have a lot of resources available for you, and one of those is a free worksheet that we have on our website. You can download it and fill it out by hand, or you can fill it out online and it will do the math for you. We have a similar worksheet just for Medicare as well.
When you go to get treatment, I just want to spend a little bit of time talking about the communications that you're going to get after your doctor sends their bills to your insurance company, because they're going to start to send you a bunch of communications letting you know that they got a claim, and then they're going to send you something called an Explanation of Benefits.
The way you know that this is what you've gotten from your insurance company is it's going to say, “This is not a bill,” which is usually helpful. It'll have policy information and it will also have a summary of the amount that was billed and approved and what you might owe.
Now, what you have to do is look at the services that were actually billed. They will break those down for you so you can look and verify that they billed for all the services you received. They will tell you what the allowed amounts are, what they paid, and then also apply any of your responsibility in the form of deductibles, copayments, co-insurance, and tell you what you owe.
Lastly, on your Explanation of Benefits, there will hopefully be, somewhere, a summary of how much you've paid towards your deductible and your out-of-pocket maximum. When it comes to the medical bills themselves that you get from your provider, sometimes you get the bills before you get your Explanation of Benefits.
We encourage you to work with your providers. Let them know that your insurance company is either still processing the claim or maybe you just haven't gotten the Explanation of Benefits first. Ask them if they can wait so you can get that done before you pay that bill, because you don't want to end up overpaying.
If you do get a bill and you don't understand what's on it, you have the right to a plain-language explanation. You can also check and ask them if there's anything on that bill that's not on the Explanation of Benefits, because they should match. And remember, don't forget to appeal if you get a denial.
If you're having trouble paying for your bills, you might have some options. The big one that I want to tell you about is charity care, which is when nonprofit hospitals offer free or discounted healthcare to patients with certain incomes. Sometimes they're called financial-assistance or ability-to-pay programs.
Very often, for-profit hospitals offer these programs too, but they can sometimes require you to do a little bit more digging to get the information about them—you’re going to have to proactively ask. These programs cover both inpatient and emergency-room services, and bills should not go to collections while your application is under review.
If you need help applying for charity-care services, please consider reaching out to our partner organization called Dollar For, because all they do is help people apply for charity care from hospitals. You can also negotiate with your providers. The best time to do that is before unpaid bills get sent to collections.
You can ask for more time to pay the bill; ask if they'd be willing to write off a portion of the bill; negotiate a payment plan; or accept a lower lump-sum payment. We have a resource called our Medical Bill Tracker. It's interactive. You can enter your deductible, your out-of-pocket max, and then you put in the information when you get the bills throughout the year, and it does the math for you so you know when you've met your deductible and your out-of-pocket max.
The reason that's so important to keep track is because it helps empower you when you go get medical treatment—you know what to expect. Sometimes your medical providers aren't up to date or keeping track, and so you can push back and let them know maybe you've met your out-of-pocket maximum and don't need to hand over that copayment or co-insurance that day.
In the interest of time, I'm just going to run through some financial-assistance resources that we have on CancerFinances.org. We have a module about managing prescription drug costs where you can get information about pharmaceutical and specialty-assistance programs. You can search by the company name that manufactures your medication, the prescription name— all sorts of different ways you can search—and you can get information about the financial-assistance programs they offer to patients, as well as potentially assistance getting prior authorization and challenging insurance denials.
We also have a drug discount card that we offer in partnership with NeedyMeds. Many people are familiar with these types of cards. There are all sorts of other options out there, so if you're already using one of these and it's been working for you, that's great. The important part about these drug-discount programs that I want you to understand, though, is that they work outside of insurance.
So if you do use the drug-discount program to save money—because it might be cheaper than your copay offered under your insurance—just understand that the money you're paying is not going to count towards your insurance policy's deductible and out-of-pocket maximum for prescription drugs.
So you have to take that into consideration about whether it's going to save you money. We also have a whole module devoted to other financial-assistance options that is divided up into a bunch of different categories. If you need help even with daily living expenses, this is where you can go to find that.
I'm just going to leave you by letting you know we have a blog and a newsletter where you can stay up to date with hot topics that impact the cancer community, as well as hear about our upcoming events. We have a new podcast that I hope you tune into. We answer questions that people send in to us and talk about questions and issues that we're getting a lot of our callers asking about. Every year we offer a free webinar series. We do one at least once pretty much every single month—usually except for December—and there's one still remaining for this calendar year, which is the second part of our “What Should I Know About Medicare” series on November 19th.
If you are in Medicare open enrollment and want to listen to part one, you can do that on our Past Webinars website so that you can be prepared for part two. Lastly, if you can't get any of your other questions answered with our resources, we have our Legal and Financial Navigation Program. That's where our friendly staff attorneys, like me, will answer your questions.
We talk to you about your rights, and we talk to you about what kind of information might apply to your situation and help empower you to take next steps. You can sign up online at TriageCancer.org/gethelp. We also have a volunteer Certified Financial Planner program, and to help reduce financial toxicity, we have a wonderful group of volunteers that talk to our callers about all sorts of things, such as how to budget if you are suddenly on a reduced or limited income.
If you are transitioning out of work for whatever reason, or if you're trying to manage debt, they can be amazing resources of information. If you want to get connected with one of them, please contact us through our Legal and Financial Navigation Program. We'll talk to you, get a better understanding of your situation, and do our best to get you some volunteer help.
I hope that you stay in touch. We have social media—our handle is @TriageCancer. You can find us on Instagram, Facebook, and BlueSky. Last but not least, if you are a hard-copy person—if you like to have paper in your hand to read and review, which can sometimes be great if you're always running to the doctor and you need to keep things on hand for reference—you can order any of our printed materials, and we will send them to you for free from our website.
Thank you so much for having me here today. I really appreciate you as an audience, and I hope you stay in touch. And now I think we're going to take some questions.
Transcript of Q&A
Clinical Coverage & Financial Navigation for HCL Patients
Q&A with Kathryn Strobach (Triage Cancer) and HCLF Staff
In this edited Q&A from HCLF’s Patient Seminar, Kathryn Strobach from Triage Cancer answers questions raised by HCLF staff. This summary complements the recorded presentation.
Finding an Insurance Plan that Covers Your Specialist
Q: As a rare disease patient shopping on the Marketplace, should I first confirm my specialist is in-network?
A (Kathryn): Yes—absolutely. On HealthCare.gov (federal) or your state’s Marketplace, you can search by doctor’s name, practice, or facility. Use the online tools to narrow options, then call your doctor’s office to confirm with the full, exact plan name. Asking “Do you take Marketplace/Obamacare/Humana?” is too vague plans differ within an insurer.
If You’re Uninsured and Need Cancer Care
Q: What are options if someone is uninsured but needs treatment?
A (Kathryn):
Medicaid: Often the first stop. It has no open-enrollment window—if you qualify on day one of a month, you can enroll that month. Eligibility varies by state (income and sometimes assets).
Special Enrollment Period (SEP): Losing employer coverage or other life events may qualify you to enroll in a Marketplace plan outside open enrollment (separate from COBRA options).
Safety-Net Care: Federally supported facilities and community health centers (often called Hill-Burton facilities and FQHCs) can provide lower-cost care. You may combine specialty care with community clinic services (e.g., labs, primary care) to reduce costs.
Formulary Exceptions, High-Cost Drugs & Who Drives Appeals
Q: For a costly medication (e.g., vemurafenib), who handles denials and exceptions?
A (Kathryn): Many specialty clinics have social workers or financial counselors who help with denials and appeals. If your care team can’t, the drug manufacturer’s patient-assistance program often provides hands-on support (coverage navigation and financial screening).
Q: We’ve seen cases where a combination therapy is initially authorized, treatment starts, and coverage is later denied. What then?
A (Kathryn):
Act fast: Assistance programs and appeals have strict timeframes. Contact the manufacturer program immediately and start the appeal process as soon as you receive the denial.
Prior auth ≠ payment: Pre-authorization can expire or be insufficient if too much time passes or details change. If the issue is procedural (e.g., expired prior auth), request a retroactive prior authorization.
State rules may help: Some states have additional consumer protections—check your state’s rules to see if they apply to your policy.
Pro tip: If treatment is delayed after pre-auth, ask your care team to reconfirm authorization with the plan before proceeding.
Off-Label Use, Evidence, and State Differences
Q: We hear that in some places (e.g., California) off-label use can be approved if the physician submits peer-reviewed evidence. Does that apply elsewhere?
A (Kathryn): Using peer-reviewed articles to demonstrate medical necessity is appropriate during appeals everywhere, but specific approval pathways vary. Whether a state formally requires insurers to accept that evidence depends on law and plan type. Regardless, submit evidence in your appeal.
Financial Help for “Daily Living” Needs
Q: Beyond medical bills, where can patients find help for food, childcare, or other everyday expenses during treatment?
A (Kathryn): Triage Cancer’s Cancer Finances toolkit organizes resources by topic—e.g., food assistance (SNAP and other programs), childcare, assistive devices, fertility and more. National resources often link you to local providers (e.g., Feeding America food banks; local farm co-ops with produce programs).
Triage Cancer also offers financial-planning consultations (budgeting and cash-flow strategies during reduced income). Planners focus on strategy; for specific grants or aid, the toolkit and social workers are key.
Paid Family & Medical Leave vs. FMLA
Q: How do paid family leave and FMLA differ?
A (Kathryn):
FMLA (federal): Unpaid job-protected leave with continued employer health coverage for defined family/caregiver needs (if eligibility criteria are met).
Paid Family/Medical Leave (state-specific): A paid benefit in some states; details vary—some include job protection, others function more like disability income replacement.
Because rules differ widely, patients often layer benefits (e.g., paid leave + FMLA) to protect income, job, and health coverage. Triage Cancer can help you map benefits in your state.
Medicare Choices for HCL Patients
Q: Any advice for HCL patients choosing Medicare plans (now or in the future)?
A (Kathryn):
Two lanes:
Original Medicare (A/B) + optional Part D and (often) Medigap. You can see providers nationwide who accept Medicare; consider Part B coinsurance (20%) and Medigap options (guaranteed issue for first 6 months after turning 65 with A & B).
Medicare Advantage (Part C): Private HMO/PPO plans that bundle A, B, usually D, with network limits, OOP maximum, and extra perks (vision, dental, hearing, fitness).
Focus on coverage, not perks: Consider provider networks, prior authorization burden, and total costs.
Under 65 via disability: Some Medigap access rules differ; affordability varies by state.
Drug coverage checks: To verify if a specific drug (e.g., vemurafenib) is covered, contact your plan. For unbiased, plan-specific guidance, use your state’s State Health Insurance Assistance Program (SHIP).
Remember: Medicare Advantage and Original Medicare work very differently. Compare networks, authorizations, and out-of-pocket exposure—not just premiums and perks.
Where to Get Help (At a Glance)
Triage Cancer: Education, Cancer Finances toolkit, legal/insurance navigation, and financial-planning consults.
State Health Insurance Assistance Program (SHIP): Free, unbiased help comparing Medicare options in your state.
Your Care Team: Social workers, financial counselors, and prior-auth/appeals support—especially in specialty centers.
Community Resources: FQHCs/Hill-Burton facilities, food banks (e.g., Feeding America), co-ops, transportation aid.
State Agencies: Department of Insurance/Consumer Assistance Programs; state paid-leave programs (where available).
Disclaimers
Insurance rules, state laws, and program availability change over time and may vary by plan type (employer-sponsored, Marketplace, Medicare, Medicaid) and by state.
This Q&A is educational, not legal or medical advice. Patients should consult qualified professionals for decisions about coverage, appeals, and care.