Navigating Insurance & Medical Bills with Myeloma in 2026: Costs, Medicare Changes & Appeals

Susan Yoon:
Hello everyone. My name is Susan Yoon and I'm a staff attorney with Triage Cancer. For those of you who are not familiar with us, Triage Cancer is a national nonprofit organization that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers. And we provide that education in a lot of different ways. We host virtual educational events and we have a lot of written resources on our website like quick guides, checklists and worksheets, as well as animated videos and webinars. And you can go to our website, triagecancer.org, to find all of this information. Now, in the cancer community, we spend a lot of time talking about financial toxicity. This is a term that was coined by researchers that discovered that the out-of-pocket costs of a cancer diagnosis have a similar negative impact on an individual's quality of life that the physical toxicity of a cancer treatment can have.
And now, they didn't just look at the dollars and cents of it all, but they really looked at overall impact on the person's quality of life and the diminishment of that quality of life. So while that seems like it'd be a pretty easy problem to solve, we know that... Sorry. It's a relatively new term, but it's certainly not a new problem. Now at Triage Cancer, we believe that health insurance status is the number one contributing factor to financial toxicity. And that seems like it'd be a pretty easy problem to solve, but we know that health insurance in the US is so complicated that people really don't understand health insurance or how to pick the right program for themselves or the plan for themselves. And there are studies that have been conducted and there's this one particular study that found that only 4% of the people surveyed could define the four most common terms founded in insurance policy.
And we know to be an informed consumer, you really have to almost learn a new language around health insurance to really be effective in finding the right policy for yourself. And again, there are multiple studies out there that show that Americans just are not very confident when it comes to finding the right health insurance plan for themselves and we can see why that is. So to break down that barrier for you a little bit, I'm going to be covering some terms that all relate to the cost of health insurance. And this is whether you get your health insurance through the government or the marketplace or through your employer. All of these terms apply to you. The first is your premium, which is a monthly, a fixed amount that you pay every month just to have your insurance. And again, this doesn't relate to the cost of your healthcare. It's really just to have that insurance plan.
Then the next terms come up when you actually go to use your health insurance. And the first is your deductible, which is a fixed dollar amount that you have to pay before your insurance company will kick in and pick up any of the costs of your covered medical expenses. And this deductible will vary from plan to plan. Then you have something called a copayment or copay, and that's another fixed dollar amount that you pay when you actually go to use your insurance. An example would be if you pay say $20 to go to your primary care physician, that would be a copay, or $200 to go to the ER. Then you have your co-insurance or cost share. And that's different in that it's not a fixed dollar amount, but it's a percentage of your covered medical expenses.
So you might have an insurance plan that has an 80/20 plan. That would mean that your insurance company would cover 80% of your covered medical expenses while you'd be responsible for the remaining 20%. But the final and most important term is your out-of-pocket maximum. Now, the out-of-pocket maximum represents the most that you will have to pay out of pocket for any of your covered medical expenses for the whole year. Once you've met that out-of-pocket maximum, your insurance kicks in and picks up the remaining covered expenses that you have for the rest of the year. Again, this is a fixed dollar amount and it varies from plan to plan and what's included in that out-of-pocket maximum will also vary depending on your plan. So I want to share with you how the out-of-pocket maximum works and we like to do it with an example. I'd like you to meet Michael.
Michael has a deductible that's $2,000 and he has a 70/30 plan. So again, that means that his insurance will pay 70% of his covered medical expenses while he's responsible for 30%. And he has an $8,000 out-of-pocket maximum. Now, Michael spent a week in the hospital and he walks out with a $72,000 hospital bill. Now, assuming that he's had no other medical expenses for the year, how much of this bill does Michael actually have to pay? So first he has to pay that $2,000 deductible before his insurance will cover any of his medical expenses. And that leaves him with a balance of $70,000. And he has that 70/30 plan, so Michael's responsible for 30% of $70,000, which leaves him with a total of $21,000. But remember, he has that out-of-pocket maximum of $8,000. So because he's already paid $2,000 of his deductible, he would only have to pay another $6,000 to meet his out-of-pocket maximum. And then at that point, his insurance will kick in and pick up the remaining balance of his $21,000 bill.
Now, I'm absolutely not suggesting that $8,000 isn't a lot of money, but it's certainly better than that $21,000 he would have had to pay had there not been an out-of-pocket maximum and obviously much better than the $72,000 he started out at. So knowing what your out-of-pocket maximum is really important so that you will know how much you're going to be out of pocket for the whole year for your covered medical expenses. Now, as I mentioned, your out-of-pocket maximum will vary from plan to plan. First, it will vary depending on how many people are covered by your insurance. So you can have an individual out-of-pocket maximum, and if you have a family plan, then you would have a family out-of-pocket maximum. And then again, I also mentioned that what's included in that out-of-pocket maximum will also vary from plan to plan.
So if you have a plan from the marketplace, your out-of-pocket maximum will include your deductible, co-insurance, and co-payments. But there are plans out there that will carve out some of these things from your out-of-pocket maximum. For example, if you have a plan from the marketplace, I mean from the employer, sorry, your employer could carve out say your deductibles from your plan and your out-of-pocket maximum would only include your co-payments and co-insurance. They could even go further and exclude deductibles and co-payments, and it would only be your co-insurance accounts towards your out-of-pocket maximum. And then finally, they could have a completely separate out-of-pocket maximum for your prescription drugs. So it's really important to look at your own individual insurance plans to see what's included in your out-of-pocket maximums. And if you decide to change plans, it's important to pay attention to and investigate what's included in your out-of-pocket maximums.
Now, in the US, we get our health insurance through three different sources. You could go directly to the insurance company, which also includes the marketplace. You could get it through the government, which includes Medicare, Medicaid, military veterans plans, as well as state and local programs. But in the US, about 50% of individuals still receive their health insurance through their employer. And we won't be able to go into all the details of all the different specific types of plans, but we have a lot of resources on our website at triagecancer.org/healthinsurance. And as you can see, there are quick guides which kind of describe all the different options you have available to you, and we have blogs and webinars as well as animated videos that help guide you through the process of shopping for health insurance.
Now, when it comes to choosing a health insurance plan, we have an exercise here that will help you compare different plans. And this exercise can be used when you're comparing to marketplace options or even comparing to employer options, as well as comparing your marketplace option against an employer plan and maybe even comparing Medicare Advantage plans. The way you do this exercise is I have an example here of three different plans. First, we have the bronze level plan with a $200 a month premium and an out-of-pocket maximum of $8,000. Then we have a silver plan with a premium of $275 a month with a $6,000 out-of-pocket maximum. And finally, we have a platinum plan with a $400 a month premium and a $2,000 out-of-pocket maximum.
Now, when you're looking at this chart, can you tell just by looking at it how much each plan will cost you over the course of the year and also which plan would be the least expensive? So it's not a trick question. You actually have to do the math. You can't tell just by looking at those numbers. And the way you do the math is that you take the monthly premium and you multiply it by 12, because that will show you how much you'll be paying for your insurance for the whole year. And again, that's not for your covered expenses, it's just to have insurance. Then you'll add that total to your out-of-pocket maximum because again, the out-of-pocket maximum reflects the maximum amount of money that you'll be spending for your covered medical expenses for the year.
And with the examples that I just went over with you, when you do the math, you'll see that the bronze plan comes out with a total of $10,400 for the year, and the silver plan has a total of $9,300, and the platinum plan has a total of $6,800 for the year. So I think sometimes people are surprised because I think oftentimes people just shop for their insurance just looking at the monthly premium and what makes sense to them there. But understanding how your out-of-pocket maximum works helps you do this calculation to understand what the total cost is for the year. So you can see that the more expensive monthly premium actually ends up saving you about $3,600 over the course of the year in this example. And it's that combination of the higher monthly premium with a significantly lower out-of-pocket maximum that ends up saving you money over the course of the year.
So again, we believe that it's very important for you to understand how your out-of-pocket maximum works as well as how much it is. And while the costs are very important, there are other things that you also need to be paying attention to. Particularly, you should know that your providers and your prescription drugs are covered by your health insurance. Now, every health insurance will contract with certain providers, hospitals, and facilities to make up their plans network. So you want to make sure that your providers and hospitals are part of your plans network. And there are also things called formularies, which is a list of your prescription drugs and how much they will cost you under your health insurance. So it's really important to pay attention to both to make your insurance the most effective for you. And we have additionally more resources pertaining to picking a health insurance plan.
We have an animated video that goes over all of these key considerations again, and we also have a worksheet that helps you do the math. And we even have an online calculator on our website where you can plug in those important numbers that I just went over and the website will actually do the math for you. And we also have a worksheet specific to Medicare that you can find on our website as well at triagecancer.org/worksheetmedicare. Now, when it comes to enrolling in health insurance, timing matters. Every plan will have a different open enrollment period. Now, employer plans will vary depending on the employer, but if employers are counting on the calendar year, most often you'll find that the open enrollment period happens in the fall so that you can have your insurance start at the beginning of the year on January 1st. But sometimes you'll find that some employer plans will start at different times of the year. So you really have to check your employer plan to make sure what that open enrollment period is.
Now, Medicaid doesn't have an open enrollment period. You can apply at any time of the year as long as you meet your state's eligibility requirements. Medicare has an open enrollment period from October 15th to December 7th, and we have a lot of different webinars on our website that discuss Medicare and explain the different options you have and things to pay attention to for open enrollment. And in fact, we're also going to be presenting a webinar on October 13th, right before the open enrollment period starts called Make the Most of Your Medicare Open Enrollment so that you can kind of learn more about different things that you might want to pay attention to when it comes to your open enrollment time. And for the 2027 plan year for the marketplace, open enrollment will begin November 1st and end January 15th.
There was some talk about shortening that open enrollment period, but there have been some lawsuits filed. And so for now, they're sticking with the original open enrollment period of November 1st to January 15th. Now, once you decide on your health insurance plan, there are also other programs that might help you save some money on your healthcare costs. One particular program is a Health Insurance Premium Payment program, or HIPP, not to be confused with HIPAA. Now, this program is open to those who are eligible for Medicaid. And what this program does is it actually pays... So your Medicaid office will determine if it's more cost-effective for them to actually pay your employer-sponsored premiums, including COBRA premiums, instead of providing a coverage directly through the Medicaid program. You can apply and they'll make the determination whether you qualify or not. And now, not every state has this program, and even if your state does have this program, it can come and go depending on their budget.
But it's a really great option for people if you have employer-sponsored plans, but the premiums are just too expensive for you to do it on your own, then there's the potential of getting some help through your state Medicaid office. And through the Inflation Reduction Act, there were some COVID-related enhanced premium tax credits that allowed for financial assistance to different income levels as well as higher income levels. But those subsidies were set to expire at the end of 2025 and they did, and Congress opted not to extend those subsidies. Another thing that was introduced with the Inflation Reduction Act was the Medicare Part D out-of-pocket maximums in 2025. Now, these out-of-pocket maximums apply to Plan D drug programs and they're with a Plan D with original Medicare, or if you have a Medicare Advantage plan and have drug coverage, then this out-of-pocket maximum will apply to those plans.
Now, this out-of-pocket maximum only applies to those prescription drugs that you receive under Part D. They don't apply to other parts of Medicare. So an example would be if you receive IV chemo treatment through your doctor's office or an outpatient clinic, that would be covered under your Medicare Part B. So those costs would not be applied towards this out-of-pocket maximum. It's strictly for Part D plans. And currently for 2026, the out-of-pocket maximum is $2,100, but it's already slated to rise up to $2,400 next year and will probably continue to rise every year. And another thing that was introduced with the Inflation Reduction Act was the Medicare Prescription Payment Plan. Now, this plan isn't a cost saving program. What it is it's a payment plan where you can spread out the cost of your Medicare prescription drugs over the course of the year. You'd still be responsible for the total amount whether you're in this program or not, but it just helps you so that you don't have to pay a large lump sum at some point in the year. You could spread out that cost over the course of the year.
And it's a voluntary program, so you can enroll at any time and you can also un-enroll at any time as well. But when you do un-enroll, you'll owe the balance due at that time and you won't have to pay the pharmacy. What you'll do is you'll receive a monthly bill from your Part D plan. Another thing that we think is very important to understand is the Medicare prescription drug exception. There are times where we find that people with a Part D plan will have their prescription drugs claims either denied or placed on a higher cost sharing tier. When that happens, you have the right to request a prescription drug exception. You'd have to work with your healthcare providers to provide supporting documentation and explain why your particular drug is necessary and why an alternative would not work for you, whether it would cause harmful side effects or would not be as effective.
And you can ask for this exception and they should give you an answer within 72 hours. And if you're in an urgent situation where you need a decision sooner, you can expedite that request and they should respond to you within 24 hours. And if the exception is denied, you also have the right to appeal that decision. We have a really great checklist on our website that provides you a step-by-step guidance on how to go through this process, just to help you maybe make it a little less overwhelming for you. And if you should be having problems or trouble paying for your Medicare's Part A and B, there are a few programs out there available also.
Now, these programs are based on your income and resource limit, and they vary depending on whether you're an individual or a married couple. These programs are run through your Medicaid office, and so while the federal government does set baseline requirements for this program, states can operate under different levels and sometimes they're more generous and have different program names and rules for these programs. And if you do qualify, you would receive help paying for your Part B premiums and sometimes your Part A premiums as well as deductibles and co-payments and cost shares.
And if you should need help paying for your Medicare Part D plans, there is a program called Low-Income Subsidy or Extra Help. Now, if you qualify, most people will not pay a premium or deductibles and will have lower co-payments and cost shares. There are three ways that you can automatically qualify for Extra Help. One is if you have full Medicaid coverage. Another is if you receive assistance through your state paying your Part B premiums. And finally, if you receive supplemental security income, then you would be automatically enrolled in the Extra Help program. But if you're not eligible through those routes, you can still apply to your Medicare office and then they'll see if you meet the income and resource limits to qualify for this program. And if you do qualify, you pay less on your prescription drugs and then also potentially get assistance with premium and deductible payments.
There are also state pharmaceutical assistance programs that are available in some states, but again, those aren't available in every state, so you can go on Medicare's website to see if your state participates or has some sort of program like that. Now, something that we think is incredibly important for people to understand is that you don't have to take no for an answer when it comes to a denial on an insurance claim. We as consumers have two opportunities to appeal that decision. The first is an internal appeal where you're basically going back to your insurance company and asking them to reconsider and please cover this claim and not deny it. The second is an external appeal where you're going to an independent entity and asking them to review the situation and determine if the insurance company got it right or not. Excuse me.
And I know that this is a lot when you're already going through a lot with your healthcare as it is, but we have data that tells us that 40 to 60% of all claims that are appealed actually are decided in favor of the patient. So here's the problem though. We have a study that shows us that in a year of marketplace plans, there were over 48 million claims that were denied, and only 0.1% of those denied claims had appeals filed in them. So you can see that this is a hugely underutilized tool that we have in our toolbox. And what that also indicates is that there are a lot of people out there who are not receiving the care that their healthcare providers are prescribing for them, or if they are receiving it, they're actually paying out of pocket, which you can imagine is a huge contributor to that financial toxicity we were talking about. So we encourage you always to appeal if you can.
And we know that one of the hurdles to appealing is staying organized. As you can imagine, there's a lot of communication that's going to go back and forth, whether it's through phone calls or emails or papers, documents going back and forth. We encourage you not to use the Post-it note system because if you're anything like me, it will disappear when you need it. We actually have a health insurance appeals tracking form on our website that helps you stay organized. And the great thing about the tracking form is it kind of triggers reminders for you on the things that you should be paying attention to, whether it's the dates and times of the phone calls, who you spoke with, maybe even notes or a summary on the conversation, as well as keeping track of all the documents that are sent back and forth and keeping track of important dates, because we certainly don't want you to lose that appeal because you've missed a deadline.
And we also encourage you to delegate to family and friends because we know that a lot of times our family and friends want to help but don't know how to help. So sometimes it could be helpful just to have someone there while you're having these conversations or maybe someone's really great at organizing paperwork or even to help you remember your deadlines.
Now here we have an appeals checklist, and we want you to understand why your claim was denied so that you can gather evidence to support why your claim should have been approved and not denied. It's important to submit all your necessary paperwork and again, pay attention to details, and remember the golden rule, always appeal. And if your initial appeal or internal appeal is denied, you have the opportunity to file an external appeal and you can always expedite these appeals if you're in an urgent situation. And remember to always stay organized and don't give up. And we have a lot of different resources on our health insurance page that goes over this appeals process as well as the appeals tracking forms. So I encourage you, if you have to handle an appeal, to visit our website and see our resources on there.
Now, even if you do everything right and you have greater health insurance and you win all your appeals, you're still going to have some medical bills. And in the process of medical billing, you're likely to receive a lot of communication. Just from the insurance company alone, you'll probably receive something saying that there was a claim filed in your case and then that they're processing it. And finally, but most importantly, an explanation of benefits, or an EOB. This is an example of what an EOB might look like. Every insurance company does it differently, but it should all have the same basic information. There should be somewhere on there a statement that says this is not a bill because it's an explanation of your benefits and not a bill.
Then somewhere it will say who the policy holder is and who the claim is for, and then a quick summary of the bill, as well as a chart that outlines the date and type of service and the provider, and then an explanation of how much was charged, but what the allowed amount was, which is the amount that the insurance company and the provider agreed to pay for certain services, and then what your cost share or copayment might be. And finally, what's really helpful is there should be somewhere on your EOB how much of your deductible has been met and how much of your out-of-pocket maximum has been met, because it's really important, again, to keep track of those numbers.
And then you will receive a bill from your providers, whether that's your doctor's office or hospital or even labs. The problem with this is oftentimes the bills will arrive before your EOB arrives, and so we encourage you not to pay a bill until you've actually seen your EOB and made sure that the charges are correct. Sometimes that might take a little bit of legwork on your part. You might have to track down that EOB either through your insurance portal or by calling the insurance company, but we encourage you to be proactive about it because we certainly don't want you to pay more for that bill and then be in a situation where you have to ask for a refund from your provider. So it's always important to check the two against each other to make sure that you're being charged the correct amount.
If you should be having trouble paying for your hospital bill, there's something that is called charity care. Nonprofit hospitals are required to offer free or discounted healthcare to patients with certain income levels, and there are also some for-profit hospitals that also have some sort of financial assistance program as well. Now, these programs are called, like I said, charity care or financial assistance or ability to pay programs, and they can include inpatient and emergency room services. And while your financial assistance application is pending, the hospital cannot send this bill to a collection agency. And we have a really great partnership with a nonprofit organization called Dollar For, where they can help you find if your hospital has some sort of a charity care program like we're talking about, and they'll even provide you with tips on how to apply, and in some situations, they'll even submit an application on your behalf.
Now, if you have a bill that you're having trouble paying, there are a few options available to you, and we recommend that you try these options before the bill is actually sent to a collection agency. The first would be to ask for more time to pay your bill, and then maybe you could negotiate to see if they'd be willing to write off a portion of that bill, and you could also negotiate to see if they would be willing to accept a payment plan. And sometimes we find that providers or creditors are willing to accept a lower lump sum payment, and by that I mean, say, for example, if you have a thousand-dollar bill, instead of paying $100 a month for 10 months, you might be able to offer them maybe $600 to pay the bill off, and they'd be willing to take that because it'd be faster and quicker and easier for them to accept that lower lump sum than to have to administer a monthly payment program.
And this can also work with other types of creditors as well. Again, in the spirit of staying organized, we have our medical bill tracker, and you can find that on our website. On that bill tracker, you'll be able to input your deductible amount as well as your out-of-pocket maximum amount. And then, like you see at the bottom here, you'll input your bills, and then it will keep track of how much of your deductible has been met and how much of your out-of-pocket maximum is remaining. So this is a really great tool to keep track of all these important numbers so that you can kind of plan your expenses for the year.
One of the benefits of keeping track of this is that you might find yourself in a situation where you're going to a provider and they might say, "Oh, you need to pay a copay or a cost share, or you have to prepay for a service." But if you've been keeping track of these numbers and you know that you've met your out-of-pocket maximum, you can let them know and then not have to pay at that visit and then avoid another situation where you're overpaying for something and having to ask for a refund. So again, another reminder to keep track of your out-of-pocket maximums. And it's also very important to keep track of all of your bills, whether those are your medical bills or pre-authorizations or your EOBs, as well as receipts for travel, as well as lodging and food if you have to travel to receive your medical treatment.
And one of the reasons it's important to keep all this information is obviously for the appeals process if you should need to appeal, but it's also helpful if you have an HSA or FSA account and you need to get a reimbursement. But also, even if you don't have an appeal and you don't have one of those programs, it's important to keep records of all of this because some of these medical expenses can be a tax deduction. So you do have to though keep records of all of this in order to use them for your tax returns or other programs that might be available to you.
Now, I've just briefly touched on these topics, covered a little bit of what we have on our website, and we host a triage cancer conference. We have them twice a year, and they're over a two-day period, and they're open to everyone. They're open to individuals diagnosed with cancer or another chronic serious medical condition, as well as caregivers, healthcare providers, and advocates. And we cover a wide range of topics over that two-day period. We talk about being an advocate as well as health insurance, finance, being prepared, employment and disability law. And so I really encourage you to join us for our conference to learn about all these different topics. And I often say, you don't know what you don't know until you start to hear about these things, and it might trigger something where you realize, "Oh, I'd like to learn more about this one particular area." And we also provide free continuing education credits for healthcare providers as well.
And we also have a very robust webinar series. We host monthly webinars on different topics throughout the year. And as you can see, in September, we actually have two webinars because there have been so many changes to the healthcare world recently that we like to keep you updated on the changes that are coming down the line. And so sometimes we'll add an additional webinar in a month. And you can go on our website to look at our webinar schedule to see if there are any topics that appeal to you and you can sign up on our website. And if you miss a live webinar, you can always listen to past webinars. And I think it's a really great source too where you can kind of explore our past webinars to see if there's something that you're interested in but maybe missed or didn't know about. And you can learn about different topics there.
And the last thing I'd like to share with you is our legal and financial navigation program. After you've explored our website and you still have questions about your own particular situation, you can contact us by going online to triagecancer.org/gethelp, and you can answer a few questions. And if it determines that we'd be a good match to talk with you, you'll receive an email and you can schedule an appointment to speak with one of our staff attorneys. And while we don't provide legal representation or advice, what we do do is we sit down with you and talk about your particular situation and provide you with education and information and resources that might help guide you through your particular situation. So with that, I would like to thank all of you for giving me your time and including me in this great event. And I hope that you join us for other events in the future. Thank you very much.