[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] This is Real Talk, a podcast conversation where we’re digging deep into breast cancer and the realities patients and survivors face every day. We’re talking openly and honestly about just how difficult breast cancer can be from being diagnosed to selecting the right treatment plan, to living day-to-day with metastatic breast cancer and life after treatment ends.
[00:00:38] For many Americans, health insurance, open enrollment is underway. They’re deciding which coverage they need and how they can afford out-of-pocket expenses. They may be learning about high deductible plans, health savings accounts, flexible spending accounts, and so many other options when it comes to health insurance.
[00:00:57] So how do you know which plan is right for you? Joining me today is Valerie Nelson, manager of Federal Policy and Advocacy at Susan G Komen and Mari Montesano, a manager at Komen’s Breast Care helpline, who assists individuals in need of information, support, or help navigating their breast help issues.
[00:01:17] Ladies, thank you for being here today to discuss this very complex topic, but one that can be critical if you’re going through costly breast health issues and cancer treatment. So, Valerie, let’s start with you. Tell us a little bit more about the work you’re doing when it comes to policies that affect insurance coverage and cost.
[00:01:35] And then when you finish, Mari, we’d love for you to introduce yourself and tell us how you’re helping people day to day navigate through health insurance hangups.
[00:01:43] Valerie Nelson: Yeah. So yeah, like you said, I’m Valerie Nelson. I am Komen’s Manager of Federal Policy and Advocacy. Which just basically means that I have the distinct pleasure of serving the breast cancer community here in, in sunny Washington, DC as part of Komen’s Center for Public Policy.
[00:02:04] So at the Center for Public Policy here at Komen, we work on the state and federal levels just to try and make, you know, a more equitable and accessible healthcare landscape and system. We try to do this through long lasting systemic policy change. And so what that means in my role is that I work with Congress and the administration and regulatory agencies and I like to joke that anyone you see on CNN to make the lives of people living with breast cancer just a little bit easier, try to effectuate policy change that,
[00:02:45] that improves people’s lives and makes it easier to access healthcare, especially throughout a breast cancer journey. So this is a great conversation to have and to share more information about. Because there’s been a lot of shifting and changing in the policy world and the healthcare landscape.
[00:03:05] We wanna make sure people feel kind of comfortable trying to make. Heads or tails of their health coverage, especially right now during open enrollment season. We’ve had a lot of progress in the healthcare space over the years, but there still a lot of gaps. And insurance regulation can be really complicated and confusing for a lot of folks.
[00:03:32] So we try to make sense of that. We work in that policy space just because of the breadth of impact policy can have on our lives, both positive or negative. And at Komen. And a whole host of issues on that systemic level. Or like I said, that long lasting policy change. And thankfully we’re not alone in this.
[00:04:00] And we work to try enhance the the efforts of our colleagues like Mar
[00:04:08] Mari Montesano: Thanks Valerie. Yes, I’m Mari and I am one of the managers for the Susan G Komen’s breast care helpline. And we are just here, we have patient navigators on our line taking calls as well as our long-term patient navigation team, helping individuals daily access, resources, education, and support.
[00:04:31] You know, it can be from newly diagnosed to mBC diagnosis or just needing screening or diagnostic services because they have a you know, an issue going on. So our main role is to help individuals access, what they deserve to access. You know, helping them understand their health insurance, helping them understand what type of treatment options they should have available to them and different providers they should have on their team, and just what support options they have out there.
[00:05:04] And so that is what our team on our helpline does every day. So I’m super..
[00:05:11] Valerie Nelson: It’s complicated and that’s okay to be, it’s okay for it to be complicated.
[00:05:16] Mari Montesano: Yeah, there’s a, it’s a, it’s a lot. And you know, every call we get is different. We never know really what we’re going to get. Every situation is so individualized and that’s why I really encourage people to call because we’re here to help
[00:05:33] that individual person and it’s, you know, every resource there. Some resource might be the same, but we really try to individualize our support to that person that’s calling. And so I think that kind of talks a lot about insurance, right? We, insurance is a confusing. Just beast of a thing for individuals, and it’s just, you don’t realize how much you need it until you need it.
[00:05:59] And and I think that’s really, it’s really hard. And so I’m so glad we’re having this conversation and I’m so excited to also learn from you Valerie, as well. So kind of let’s just, let’s jump in. I would love to know what are some of the most important things people should be aware of when they’re selecting their health insurance plan?
[00:06:22] Valerie Nelson: Yeah. So I think, like you said, this, health insurance is complicated and I think maybe this year, thanks to some policy changes that have been happening, it’s, it might be a little bit more complicated or maybe a little bit more daunting for people. So I think really what’s important for people to know as they’re looking in this open enrollment period as they’re trying to figure out what next year
[00:06:47] looks for that looks like for them. What’s really important is that, you know, understanding what your current healthcare needs are and really trying to get a grasp on what you might need throughout the next year, especially in the event of maybe a more catastrophic event, like a hospitalization or breast cancer diagnosis and just keeping those needs for you and your family in mind while shopping, making sure you’re going in with all the information you need because the rules are changing and the landscape for insurance access looks different every year.
[00:07:26] But I think this year especially like I mentioned, there’s been those policy changes over the last few months. And so that dynamic has really changed. I know cost is a big topic for people right now, especially as some people are seeing these increased premiums. And as a result of some of these policy changes we’ve seen we’re likely to seize the number of uninsured people possibly rise this year, which changes the healthcare calculus, right?
[00:07:55] Changes the makeup of these insurance pools, which can have that impact on costs. One thing to really pay attention to this year in particular, are any network and formulary changes. So knowing your needs what network your doctor is in, knowing if you take maybe prescription medications, knowing where that is on the formulary for your current plan, and using that to inform your decision for this year because insurers are going to be responding to some of those changes in policy and those changes in market pressure.
[00:08:30] So you might see changes to those formularies and to the network because where your doctor is now might not be in network for that same plan next year, or maybe the prescription that you take could be moved to a different tier on your formulary. So it’s really important to kind understand some of that mobility there and make that informed decision and paying attention to that minutia
[00:08:56] now so that you can maybe save yourself some grief down the line.
[00:09:00] Mari Montesano: Yes, totally. I, you know, I think making sure individuals are comparing plans and not just either keeping with what they’re doing because they feel it’s working and it might be working, but like you’re saying, there’s changes, right?
[00:09:15] And so making sure that if the plan they have currently is still the best plan, that’s great. But comparing it with others is really important. Comparing, making sure that your providers are still in network, because we have, you know, we’ve had individuals call where they’re saying, oh, my provider’s being dropped.
[00:09:31] They’re not going to have, they’re not going to be covered under this insurance anymore. You know, making sure you’re checking that your providers are still, your treatment team is still in network, that your medications that your oral chemos are going to be on the, you know, covered still. Or you know, at least, you know, comparing is there a generic medication that you can take instead that would be comparable to what you’re doing?
[00:09:56] You know, really comparing all of that is so important because yes, health insurance is expensive, but there. There’s way to, there’s ways to optimize your coverage. And I think that’s so important. So making sure you’re using the tools to compare plans. So triage cancer has a great comparison tool you can use.
[00:10:15] You can also use like your local resources. So your state health insurance program, the SHIP program, they can help compare plans for you or a local sister. And they’re, you know, they’re confidential and they help. They are unbiased when they’re helping you review these plans. So it can be really helpful to make sure that you’re getting the best benefit out of the insurance plan you take.
[00:10:37] Valerie Nelson: Yeah. And really making sure you’re not necessarily taking it for granted, but making sure you know what your current insurance does for you and understanding that it might look different next year. I think one, one thing to really impress upon people in, in kind of these changes that has have been happening is that thanks to some of these policy changes this year, if you buy your coverage through an Affordable Care Act state marketplace open enrollment might be a shorter period of time for you this year than last year.
[00:11:16] That’s one of the changes that we’re seeing. Really depends state by state. So make sure that you’re looking that up, you understand what that is. But that deadline, it, depending on your state, could be sooner than what you’re used to. And many states have a deadline coming up in December, so definitely pay attention
[00:11:36] to that this year.
[00:11:37] Mari Montesano: I think that’s a great point because also, you know, I was just reading as not expecting it to roll over or like to just continue. Like you need to go check your health insurance, even if it’s the plan you want to continue to have, you need to go make sure that it’s good that you’re enrolled for next year too, and that you don’t just assume you are enrolled as you continue the coverage.
[00:12:00] And so it’s just important to stay up to date on what you’re choosing and making sure you have that coverage for the next year too, that it’s continuing. But I also think this kind of rolls into the government shutdown and how that’s going to impact or how that is impacting insurance costs right now.
[00:12:20] Valerie Nelson: Yeah. Yeah. There’s been lots of headlines, right?
[00:12:29] You know, at the center of the shutdown in this healthcare debate are these healthcare tax credits that were extended and enhanced during the pandemic to just help provide some premium relief to people. But the key here is that they expire at the end of the year. And so these tax credits are kind of targeted towards middle and lower income Americans.
[00:12:57] And there are some kind of complicated tax formularies to depend, to determine how much someone gets. We won’t go into that, but the thing to remember here is that they help people buy insurance through the Affordable Care Act marketplace and afford their health insurance premiums. And what we’re talking about seeing here is this ripple effect.
[00:13:22] So some of these tax credits are set to expire at the end of the year. And the two political parties are at an impasse right now on what to do about them. So the government is shut down. That’s kind of the source of the shutdown. But why these tax credits are so important is not just because it saves some people some money, it’s also because there are about 22 million people who receive these credits.
[00:13:47] They’re the big group people. And. Their introduction helped double enrollment in the ACA marketplace, and so that means that if those people who maybe gained access to healthcare from those tax credits might end up getting priced out of their health insurance. Again, like I mentioned earlier, when you have fewer people in that insurance school that can affect
[00:14:14] the prices and those market forces can kind of shift around. And so that’s the ripple effect that we’re seeing, not just in the ACA marketplace, but across healthcare earlier. And you know, when I think it’s also important to remember that when people are maybe looking at their healthcare premiums going up, they’re maybe having to budget a little bit or make tough
[00:14:44] budget decisions, you might start to shop around and that’s good, you know, you should shop around. But with these, you know, massive premium increases that we’re seeing for some people, unfortunately. I also wanna touch on an issue that Komen works on in the policy space, and that’s kind of this
[00:15:02] regulation around what we call junk insurance plans. And I don’t know if you’ve seen these Mari and speak to them more, but in the policy space we have concerns about these and just making sure people go in eyes wide open. Right. And like I said, we’ve made a lot of progress in kind of this patient protection space since the passage of the Affordable Care Act.
[00:15:27] But it’s good to know what protections you’re entitled to and what the law protects you from. Because these junk insurance plans that we call them are forms of coverage that don’t have to comply with those ACA standards. And so what we see with them is that things like short term limited duration plans, association health plans, I’ll share ministries, these are all kind of in that category. And what we see is they usually can limit how much they pay in benefits, or they may not always have how much you have to pay. So if you have maybe a breast cancer diagnosis while on one of these, you might find yourself in a position where you’re maybe paying more than you would have with traditional insurance.
[00:16:16] And so. We work to really try to make sure there’s transparency in the policy space around these insurance plans. Because they’re just not required to cover the same things that other plans may be. And so they can, some people may mistakenly or maybe make the choice that’s not right for them and access these, and it’s just important to make sure that you’re able to keep those risks in mind when shopping.
[00:16:46] Mari Montesano: Yes, I we’ve definitely had calls with people who, you know, signed up for one of those, you know, short term plans, thinking that it would kind of bridge the gap until they, you know, were going to get different coverage. But it ultimately actually did not cover their cancer treatment because it was one of these, you know, odd type of plans that wasn’t really, wasn’t regulated.
[00:17:08] And so, yes, it did cover, you know, obviously preventative things, but then when the individual was diagnosed, it didn’t cover anything and everything was out of pocket paying. And you know, I think that is why if you have a question, if you’re concerned about your health insurance or what to do, you’re concerned it’s too expensive, you know, reaching out to really understand.
[00:17:33] What is best for you, especially if you are diagnosed with a cancer, a chronic illness, or you know, you seek out medical care on the regular. It is important to understand your options. So getting and getting the information from reputable sources so you know, healthcare, drug healthcare.gov, or seeking out, you know, through triage cancer, through our breast care helpline to really get that
[00:17:57] you know unbiased information on comparing your plans and understanding if you do have a high deductible. You know, if you choose a high deductible plan that might lower your, you know, some of your premium co or your overall cost, but you’ll still end up paying that high deductible at some point if you seek out medical care regularly and if you’re getting cancer treatment.
[00:18:18] So just weighing your options of what’s better for you to pay for now. And understanding that there might be support out there. You know, there might be different financial assistance programs that can help cover some copays, some different costs that can help you know, offset the high costs.
[00:18:41] Valerie Nelson: And as we’re seeing people kind of see their premiums increase, having to make these kitchen table decisions. Mari I’m curious what options do people have if they can’t afford their out pocket expenses what do people do when they might be priced out of their health?
[00:19:00] Mari Montesano: And you know, I think unfortunately this is just
[00:19:04] even more of a prevalent issue. You know, we’ve gotten a lot of this issue in the past, but it’s even more prevalent right now of people having to choose between, you know, eating versus getting their care because it’s just too expensive to pay, you know, the copay every time that they’re having to go in for treatment.
[00:19:21] And so, you know, if. It depends, right? There’s, you know, obviously there’s FSA plans HHSA plans that can help, like flexible spending, account health you know, all those different types of health savings accounts. Obviously those are different, you know, the health savings account is you have to have a high deductible plan, but that could help offset some costs.
[00:19:42] And that can roll over. But you know, like the FSA is employer based, so it’s different and it doesn’t roll over. It doesn’t move with you. Where if you were to you know, move jobs or something, whereas the HSA, it should. So there’s different things to account for when you’re signing up for a healthcare plan.
[00:20:04] And again, I think it comes back down to. Why do you seek out healthcare? Are you, is it just for preventative care or are you seeing your oncologist every two weeks? Are you getting your chemotherapy? Are you having to get scans? And so it’s like all of those things also add up that you’d be paying towards your deductible as well.
[00:20:25] So really that’s why it’s so important to compare plans on what in the long term might be best for you to make it the most worth it. And you know, there’s also other things that insurance can have. You know, especially if it’s a commercial based insurance, there might possibly be, you know, different rewards that you can gain.
[00:20:46] Like some rewards you can do like step counting and you get like a dollar for every, you know, 10,000 steps or whatever. And that adds up too, so that you could then use that money to pay some copays and whatnot. Or, you know, some plans have transportation benefits. You know, gas mileage reimbursement. So making sure you understand all of those different benefits within your health plan so that you can maximize everything that you have that can help offset some costs that are going to be associated with the higher premiums.
[00:21:18] Valerie Nelson: Yeah, and I think as people are looking at these health, looking at their options right. And maybe they’re looking at. You know, what we mentioned as colloquially called as junk insurance, looking at high deductible health plans and if they find in the middle of the year, that doesn’t work.
[00:21:39] Can you change your health plan if the one you select now isn’t right?
[00:21:44] Mari Montesano: Yeah that’s definitely a hard one because typically, no typically you, especially with, you know, open, that’s why we have open enrollment times. That’s your time to choose a different health plan. Right. And to so this is why it’s imperative to know those dates, like you were saying, they could be shortened.
[00:22:01] Because typically you have to have an exception to be able to, you know, change plans. So usually it’s loss of health insurance is, you know, exception, but you know, loss of a job loss of the employer based healthcare that you might have gotten. So then you get the choice to either, if you’re employer had cobra, you can, you know, do COBRA as an option or to the marketplace.
[00:22:24] But you know, there’s definitely exceptions to being able to just get health insurance. And so that’s why it’s so imperative to take the time during open enrollment, to compare plans to understand what you need and what would be best for you and your family.
[00:22:43] Valerie Nelson: Yeah. Yeah. Really hammers home the point of think about what you need now, think about what you could need in the future and how your family would need to financially plan around maybe
[00:22:56] something more catastrophic on that plan that you’re comparing.
[00:23:01] Mari Montesano: And there are you know, not every cancer center, but a lot of cancer centers do have, or hospitals have financial counselors and that can be a really helpful tool to meet with them because they can also look at. You know, the treatment that you’re going to be getting, and look at the costs that are going to be associated with that, and what you’re going to have to pay for that as well.
[00:23:23] And they could maybe then see if you qualify for a payment plan, see if you qualify for, you know, hospital assistance programs that could help pay those out-of-pocket costs. And doing that upfront, you know, before you’ve started treatment or before you’re, you know. Through treatment, starting that up upfront to understand what’s available to you and starting the payment plan, the assistance programs upfront will be better than trying to start it at the end when you have this potentially huge bill.
[00:23:54] So making sure, you know, having that conversation upfront is so important to understand what’s going to be happening in, you know, the next year for your treatment. So that you’re aware and that you can plan that, you know, things can happen. because maybe there a payment plan can be set up that you’re paying, you know, $50 a month instead of whatever it might be.
[00:24:15] But having the conversation.
[00:24:18] Valerie Nelson: Yeah. Yeah. And I think, you know, another part of that kind of stay informed aspect of this is also in, in the policy space, right? I mentioned that there’s been changes over the past few months or policies and passing or being implemented. And all of those have different kind of implementation timelines too.
[00:24:44] And so keeping up and being informed on what, what is happening in that space also will be helpful in anticipating changes for this year and years to come, right? That shortened open enrollment period is one that I can’t stress enough. Just making sure that you’re paying attention to some of that news so that you can
[00:25:12] anticipate some of those things down the line. And I know Komen both on the helpline and on our policy side and all parts of our mission, we’re trying our best to make sure that we are putting out the trustworthy information, Mari, that you mentioned, so that people can have those informed decisions.
[00:25:30] Mari Montesano: Yeah. You know, and I think the role, you know, part of our role on the helpline and our patient navigators are to also, you know. We are aware of different resources that can help you know, specifically to cancer patients, breast cancer patients, you know, and educating them on how to talk to their provider about is there a generic option that I can take that might be cheaper, you know is there different things that I can do that would, help with cost savings, you know, asking for a social worker. So is there other programs that they have at the, at their cancer center that can help offset some costs? Do they have a transportation program? So, you know, we also can help people look for other programs that can help offset costs so that it can go to
[00:26:20] paying their copay, right? Finding food resources, finding transportation resources lodging benefits. You know, there are other resources out there that we can help try to find, then offset other costs that they need to put money towards too as well. But you know, I think the biggest thing is just
[00:26:40] asking for help. And I think sometimes, you know, when you’re diagnosed with cancer, you don’t know what to do. You’re so overwhelmed with all the information that’s being thrown at you. You’re being pushed to start everything so quickly, and it’s just a lot. And so it’s okay to say, I need to take a step back.
[00:26:56] I need to figure out what’s best for me. I need to figure out my health insurance. I need to understand it. I need to figure out how we’re going to do this. It’s okay to take that minute to reach out and just say, I need help. That’s we’re here for.
[00:27:10] Valerie Nelson: And especially if, you know, you find yourself in a position where you may be uninsured.
[00:27:15] Yes. Komen is still, is here to help all stages. Yes. All breast health information where if you find yourself in a position, hopefully not where you may be uninsured. There’s still going to be home in here to help in the helpline as well.
[00:27:34] Mari Montesano: Yes, 100%. We’re definitely here to help people just navigate this journey.
[00:27:39] because it’s a lot and we don’t want anyone to feel alone.
[00:27:45] Adam Walker: Well this has been I mean, really helpful and and I mean very just listening has been, I mean, helpful to me personally and I think will likely be very helpful to a lot of our listeners. I really appreciate both of you taking the time.
[00:28:00] Last question. For someone that’s listening right now and doesn’t know where to start and doesn’t know what’s important in selecting their health insurance plan What do you want to say to them right now?
[00:28:16] Mari Montesano: Oh, well, I would say call our helpline. No, but I would, but because it’s very important, but there, I would say it’s okay
[00:28:26] to not know what to do. And so it’s okay to then reach out to ask and to not just choose the plan because you’re worried that you don’t have anything and you’re just trying to choose the best. It’s okay to take the time to compare plans, to compare what you need that can fit you the best. And it’s okay to ask for help.
[00:28:47] Valerie Nelson: I would say ditto to all of that. It’s okay that this is confusing. It’s very naturally very natural to be confused by a lot of this. And it’s okay to ask for help, but make sure you leave time to do that. Don’t wait to the last minute and give yourself time to figure these things out to ask for help to get that help that you might need.
[00:29:10] Adam Walker: That’s great advice. Well, ladies, thank you for the work that you do. It’s so, so important. I can’t say how much I appreciate the work that you do, and thank you for joining us on the show today.
[00:29:20] Valerie Nelson: Thank you.
[00:29:28] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink.Komen.org. And for more onbreast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.