Health Insurance and Disability for People Living With Metastatic Breast Cancer

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org Senior Editor, Jamie DePolo. 

Jamie DePolo: As always, thank you for listening. This podcast is the audio from a special virtual community meetup featuring cancer rights attorney and Triage Cancer CEO, Joanna Doran. Joanna helped community director, Melissa Jenkins, lead this meetup on health insurance and disability for people with metastatic breast cancer. We hope this podcast answers some of the questions you might have. 

Joanna Doran: I'm Joanna Doran. I'm the CEO of Triage Cancer. So, for those of you who are not familiar Triage Cancer is a national nonprofit organization that provides free education on all the legal and practical issues that can come up when someone is diagnosed with a serious medical condition like cancer. And really when I tell people I'm a cancer rights attorney, I kind of get a funny look and people inevitably ask me, well, what’s legal about cancer. And my answer is, almost everything. So, when somebody is trying to figure out if a medication is approved by the Food and Drug Administration, that’s a legal issue. Whether or not that treatment is covered by insurance is a legal issue. Whether or not you can take time off work to get access to that treatment and not lose your job is actually a legal issue. 

We just don’t think of those things as legal issues and so at Triage Cancer our focus is to provide education on these legal issues so that people that better understand the protections they have access to and the benefits and programs they have access to so they can make the best decisions for themselves and really come from a place of educated empowerment. What we also find is that a lot of these legal issues are also contributors to financial toxicity, and we spend a lot of time in the cancer community talking about the cost of care and the financial implications of a diagnosis. And so, really we think that not only can we address some of these legal issues, but we can also try to prevent some of the financial challenges that people experience if we can get people this education earlier. 

And I often say, you know, if all you needed was a law to solve a problem you wouldn’t need lawyers and you wouldn’t need law enforcement. So, just working to pass laws that provide protections and benefits, that’s only step one, because then we need to tell people that these laws exist and how to actually use these laws and protections. And so, you actually need the education and navigation to be able to tap into these protections and benefits and that’s really why Triage Cancer was formed, was to provide that education and to help people understand. And so, we do that through a multi-tiered approach to education where we’re sharing information with patients and caregivers, but we’re also training healthcare teams, so they better understand things that patients and caregivers are experiencing and know about resources to help. But we also do that with employers, and we also work with other patient advocacy organizations where we’re training their teams so that they can support patients and caregivers that they’re serving as well. 

So, we do that in lots of different ways, but we have free educational events, materials, and resources in lots of different formats that are available on our website at Triagecancer.org. And then, we also have a free legal and financial navigation program where we can answer people’s individual questions. So, if people have questions about health insurance options, or changes to coverage, or employment issues, or disability insurance or finances, or medical bills, or estate planning and medical decision-making documents. Those are all things that we can help people understand and then figure out their next step so that people can get access to these protections and benefits. So, with that introduction I will stop sharing my screen so that I can see all of you and see if there are questions. 

Melissa Jenkins: So, everyone here is experiencing a metastatic breast cancer diagnosis and in treatment, and how that evolves in so many ways. So, we really wanted to be here today for you to ask questions. So, this is your opportunity folks and otherwise we’ll have her talk more. But who would like to start us off? [Redacted], I see you leaning in...

Female Speaker 1: Well, I don’t have any real specific questions. I guess my biggest question is, with all the changes that are going on with Medicare, I mean, not necessarily yet with Medicare, etc. how can we keep on top of all of that? Like, is your organization kind of the jumping to point to kind of get us to a place where we’re finding something isn’t covered that we really think should be?

Joanna Doran: Absolutely. So, in the same way that we are trying to teach people about the laws, we’re also talking to people about legislative and policy advocacy opportunities as well. Right. Because that’s what leads to the laws. So, we have an advocacy page on our website. So, if you go to Triagecancer.org/advocacy that is where we have information on how do you engage in advocacy, and there’s lots of different types of advocacy, but also, it’s where we keep track of what we’re watching in the cancer community. And so, we have some charts on our advocacy page, which are tracking things that are happening at the federal level, but also that are happening in every state. 

And there is a wide array of things, so it could be paid family leave at the state level, or it could be what’s going on at the federal level with proposed changes to Medicaid. It could be looking at state biomarker testing laws that are being proposed. So, we keep track of that in those charts. There are actually six different charts. We have the current federal issues, past federal issues, and then we also have past successes at the federal level because where we’ve actually advocated for something that has become law, we want to highlight those things. And then, we do the same things for the states. So, we have current successes and the past issues. And the reason we keep the past issues is those are things that have been proposed but didn’t come to fruition, and sometimes we want them too, right. So, it also points to examples of where we can pick those things back up and advocate for them. And so, that’s why we keep track of those past issues that didn’t necessarily become successes. 

I think there’s a lot happening, as you alluded to, and it is definitely keeping us busy on a daily basis to see what is being proposed. We are sort of internally processing all of that information. In some cases, we’re engaging in advocacy efforts and coalitions to respond to those things that are happening, like cuts to Medicaid, but then we’re also kind of taking a big picture look at how is this going to impact the cancer community and what do we do next if some of these things go into effect and then how do we push out that information. Generally speaking, the way that we’re doing that is through our newsletter. 

So, we have a monthly newsletter and then we also have an educational blog. And you can sign up to have that blog show up in your email. The blog is where we are talking about substantive topics. So, that is where we’re announcing things that have happened at the state level where there’s new law or things that have been proposed, and then also at the federal level, too. And not just laws or legislation, but also things that are happening at the agency level. Because it’s agencies that are actually implementing the laws, and so they have a lot of power in how these laws actually impact our daily lives and through agency work once a law is passed it’s really just a skeleton of what should happen and then they tell agencies, okay, now go do these things. 

And then, in order to do those things agencies actually have to propose regulations to implement the laws and the way that the structure works is they put out a proposed rule, and then they have to open it up for public comment. That used to be something that only really wonky lobbyist types actually engaged in, but they made that process a whole lot easier. So, if you can post on Facebook, you can actually comment on a regulation. It could even be, you know, one sentence that says, "This regulation would be bad because...." So, it does have to be someone with a legal background commenting on regulations, they really have opened it up to everybody to be able to engage in the process. So, if you go to regulations.gov, it actually has that list of proposed regulations that are open for public comment and then you just click on the regulation and then it’s really just a box for your comment. 

If somebody is interested in learning more about engaging in policy and legislative advocacy, we did a webinar in February that is recorded on our past webinars page that really talks about the environment that we’re currently in and how you can still engage in the process, and it also explains that regulation piece as well. So, I hope that answered your question, [redacted]. That’s how we’re keeping track of things and then we’re pushing out that information. 

There are definitely lots of things happening. I think specifically around the Medicaid changes that have been passed in the House, it is anticipated that the Senate will vote on their side of the bill before the Fourth of July holiday, and then it has to go back to the House. And they have to reconcile any differences between those two versions of the bill. So, that feels like a long time, but this is actually a very fast process, especially for a bill that big that has so much in it. We’re still processing this section by section and figuring out what are the things that are going to impact our community. So, we actually have a blog that’s scheduled this month to push out information about what’s in the current House version of the bill. We’ll obviously have to wait to see what the Senate does with that. 

Melissa Jenkins: [Redacted].

Female Speaker 2: Thank you, Joanna. That’s really fascinating. I have a couple of questions from that. So, if I'm understanding the process then once the bill goes back to the House for reconciliation, then it has to go to public comments. Is that correct or the comment period is between the Senate and the House?

Joanna Doran: Sorry for confusing two separate things. So, the comments that I was talking about are specifically for regulations at the agency level. That’s a separate process. So, that’s after a law has already been passed. Then agencies work to implement those laws and that’s the proposed rule-making process. 

Female Speaker 2: Okay. So, once it’s passed into law then it goes to the agencies who create the regulations that the public can comment on before it’s implemented?

Joanna Doran: Exactly. 

Female Speaker 2: The time period then for open enrollment then that is happening in October to December would not be encompassing any changes that are being made to Medicare or Medicaid yet?

Joanna Doran: So, there are a couple of pieces to that question. So, first for Marketplace open enrollment it has been proposed in a rule to actually change the open enrollment period. It is, I believe, still open for public comment at the moment, but I anticipate that there won't be any changes to that. The advocacy community is advocating for that change. I would imagine that it is not going to change. So, I believe that we will have a shorter open enrollment period for the Marketplace this fall for 2026 plans. 

Female Speaker 2: Okay. 

Joanna Doran: The other significant thing that is happening is that the additional financial assistance for people to buy plans in the Marketplace that have made it much more affordable to buy a Marketplace plan, that additional financial assistance was added through two COVID bills. It was in the American Rescue Plan Act and in the Inflation Reduction Act. That additional financial assistance expires at the end of this year. So, the Marketplace plans that are going to be available for next year are going to be much more expensive for people if Congress does not extend that additional financial assistance. At this moment in time, I am not incredibly optimistic that that is going to happen but it is possible, and the advocacy community is working for that.

And then, the open enrollment period for Medicare, I have not seen anything where there’s a proposal to change that. It has historically consistently been October to December, and then there are a whole lot of changes proposed for Medicaid in lots of different ways. So, again, we’ll have to wait to see what happens in the Senate. So, I hope that answered all of the…

Female Speaker 2: No, it does. Thank you. And just very quick, your organization offers appointments to answer questions or is it simply through a chat feature?

Joanna Doran: No, it’s appointments. So, within our legal and financial navigation program, which I can throw into the chat, it’s Triagecancer.org/gethelp. It goes directly to that page, and you fill out a form with the questions that you have and then it sends you a calendar link for you to pick a time to talk with our team. So, it avoids that phone tag that often happens. 

Melissa Jenkins: You spoke about the changes to Medicaid briefly that are potentially going to happen. We have a number of people who are reliant on Medicaid. Do you have a plan of action for them? Do you have suggestions for those individuals?

Joanna Doran: So, I think there’s a couple of big things that are being proposed to Medicaid that are very likely to end up in the Senate version or the final version of the bill. I think the one that seems most likely is adding a work requirement to Medicaid, that does and doesn’t impact our community and I’ll kind of explain why. It feels perfectly logical to say people who have access to Medicaid should work. I think a lot of people feel like, rationally that makes sense, but on a practical level, that’s where we see challenges. 

There are different ways to get access to Medicaid. For individuals who have a medical condition that qualifies as a disability for social security standards, they get access to Medicaid if they have a low-income level and have a disability. You can also get access to Medicaid if you have a low-income level, and low resources, and are also over the age of 65. For those two populations, they’re not going to be subject to the work requirement because of the way they access Medicaid. What the work requirement I think is really focused on is the Medicaid expansion population, which made it easier for people to get access to Medicaid because it only focused on their income level. They didn’t have to meet another category of eligibility, and they didn’t take into consideration assets or resources. So, it’s just based on income level. And that actually was very important for people in the cancer community to get access to health insurance coverage through Medicaid. 

So, Medicaid expansion was important to the cancer community, but again if somebody is in treatment and is unable to work because of their medical condition they could potentially fall into the exception for the work requirement. If somebody is in school or works x amount of hours per week then they can still get access to Medicaid. All of those things in theory seem fine. The logistical problem is that you have to show you qualify. So, you have to fill out paperwork to do that and to submit it and not everybody is comfortable filling out the paperwork for a variety of different reasons. 

So, we saw this happen when the COVID pandemic ended and states had to check to see if everybody still qualified for Medicaid. And we saw 70 percent of the people who were being kicked off Medicaid were being kicked off not because they weren’t still eligible, but because they didn’t submit the paperwork. So, people were getting paperwork, and I don’t know about you, but I get a ton of junk mail and it’s hard to sometimes differentiate what is real and what is junk mail. So, people often would dismiss things that they actually needed to fill out or there’s literacy challenges and really understanding that. Also providing the proof. If somebody is sick and is not opening their mail on a daily basis, do they miss a deadline to get their paperwork back? So, seniors and people with disabilities were actually disproportionately losing access because they weren’t filling out that paperwork by the deadline and getting it back in. 

Also, not every state really has the infrastructure to support sending out all these notifications and then processing them when they come back in. So, the administration of a work requirement is actually very costly for states. There’s been some data that shows that it’s actually more costly for the state to administer the work requirement than just to have given everybody health insurance coverage. So, again it’s one of those policy decisions that sounds logical, but then when you flush it out and you see the domino effects, it starts to make less sense. 

So, I don’t know the details of what's going to end up in the final version of the bill and how they write their work requirement. So, you know, what’s the evidence that people have to show? How often do they have to do it? Is it once a year? Because it’s been suggested that it’s also going to happen twice a year. So, it basically is throwing up barriers to address a very small group of people who could be working but aren’t working and have access to Medicaid. So, I hope that provides some perspective around it. 

But there are lots of really like very nuanced details that have been proposed, but I don’t know if it will wind up in the final bill. One of those details is actually, if somebody doesn’t turn in their paperwork for Medicaid and they end up losing their Medicaid, they would also be ineligible to go to the Marketplace and buy a Marketplace plan and qualify for the financial assistance in the Marketplace. So, it kind of like doubly impacts that population who could potentially just not be able to submit their paperwork. Those are people who won't have access to health insurance coverage and if they have serious medical conditions and need access to care that’s obviously going to impact people’s lives. 

Melissa Jenkins: Thank you, Joanna. [Redacted]?

Female Speaker 3: Hi. Thank you, Joanna, for having this webinar and thank you Melissa. My question is about long-term disability. I had applied in April, on April 1st. I'm in California and it says for California the average decision will take 232 days. Is there any way…because, I mean, I check the website all the time to see if the progression has moved. I've been in step 2 since April 15th and it says that you should hear within…you should go through that step…past that step within 15 to 30 days, but I haven’t heard anything back on the website. Is there any way to speed it up or anything else I can do to check to provide, you know, check to provide them with?

Joanna Doran: Yeah. I'm going to actually ask you a couple of questions to be able to answer your question. When you say long-term disability, do you specifically mean Social Security Disability Insurance through the Social Security Administration?

Female Speaker 3: My sister’s on here with me so she’s going to help me out. Yes. 

Joanna Doran: Because the answer would depend on what type of disability insurance we’re talking about. So, with Social Security Disability Insurance, that is administered by the Social Security Administration. That is a federal agency that has been significantly impacted by what’s referred to as the DOGE cuts. So, the cuts to staffing at federal agencies…they were already horribly understaffed and that has only gotten worse. We don’t know exactly long term what that’s going to look like for the Social Security Administration, but it has always been understaffed. So, unfortunately, the application process does take a long time. 

So, there are a couple of programs that they have created that speed up the first step in the application process. One of those is called Compassionate Allowances, which effectively is a list of medical conditions where if you have a medical condition on that list, you're presumptively eligible for disability benefits, but that doesn’t mean you automatically qualify. What it means is they think it’s going to be pretty likely you're going to qualify for benefits, so they speed up that first step in the process because you have a medical condition on the list. Metastatic breast cancer is a medical condition on the Compassionate Allowances list. 

So, the process still is going to look at, can you work? Because what Social Security cares about for SSDI is do you have a medical condition? Is it expected to last at least a year or longer? And does it keep you from working? So, that’s the test of disability for this program, specifically. So, they’re still going to ask those questions and go through that assessment process. The other problem is that SSDI also has a five-month waiting period. So, even if you're approved tomorrow, they’re going to look at when did they decide your disability began, which is typically the day you stopped being able to work, and the for five full months you won't be eligible for any cash benefits. 

Female Speaker 3: So, it’s not paid retroactively at all. 

Joanna Doran: It does, but they always carve out that five-month waiting period. So, there’s nothing that makes sense about that. So, I appreciate the people looking confused because it doesn’t make sense. But unfortunately, there is that five-month waiting period. They do pay back payments between the date their application was approved and the date that you applied, and they’ll go 12 months before the date that you applied, if they decide that your disability began earlier. So, they will give you a maximum of retroactive benefits. 

So, I will just say, I know I just said all those words that possibly don’t make sense, but we have a Quick Guide to the timing of SSDI and Medicare benefits that actually explains those periods of time and help you figure out when your Medicare coverage would begin. So, that Quick Guide is actually pretty useful because there are some examples with timing. I will admit, I am not a math person, that’s why I'm a lawyer, but it is all about the math. So, we’ve included that Quick Guide to help explain that particular process so you can figure out when your benefits begin, how many months you're eligible for back payments or retroactive payments, and then when your Medicare coverage actually would begin. 

So, I got a little bit off target. So, we were talking about Compassionate Allowances. It speeds up that first step in the application. So, if your application wasn’t originally flagged as being a medical condition that is on the Compassionate Allowances list, that is something that you could ask them to add. 

The second program is called Quick Disability Determination, which is actually a computer program that they run your application through and it flags if you are likely to have a medical condition that would qualify. There isn’t a way to ask for that to happen. It’s something that they do on the backend. Both of those programs, while they speed up the first step of the application process, they do not eliminate the five-month waiting period for disability benefits, for SSDI specifically. 

So, there is also something that is referred to unofficially as a TERI case. And it actually existed before these other two programs where if somebody has a terminal illness then they would also be designated as a TERI case and their application would be sped up. But even in those circumstances, it doesn’t eliminate the five-month waiting period for SSDI. So, those are the ways to speed up the application process. So, other than having the Compassionate Allowances medical condition or qualifying as a TERI case, there isn’t another way to speed up the application process.

Female Speaker 3: Okay. I appreciate that. On the application, it did ask you know about the disease, it basically asked all of those questions on there and asked for the procedures that you’ve had, etc. And so, it does say that we’ve started step 2 of 5 of the review process for your application. So, maybe that’s what you're talking about that it skipped over at least into the…not the approval, it’s not going to be approved for another 3 steps. What those steps are, it doesn’t give me a breakdown, so maybe I can find that somewhere else.

Joanna Doran: Yes. I would also say that, you know, I know you said 232 days on average, but because you have a medical condition on the Compassionate Allowances list, I think it would likely to be approved faster than that. 

Female Speaker 3: Okay. Thank you very much. 

Joanna Doran: Of course. Sorry I didn’t have a better answer though.

Female Speaker 3: It was a great answer. Thank you. 

Melissa Jenkins: [Redacted] and then [redacted].

Female Speaker 4: Hi, Joanna. How are you doing?

Joanna Doran: Good. It’s nice to see you. How are you?

Female Speaker 4: It’s so good to see you. Good. I apologize I was a few minutes late getting in because I was finishing up work, but I just wanted to make sure that I was understanding what you were saying about determining the date of disability and how that factors in. Because I am still working right now. I have continued to work since my original diagnosis — not my original, it was a de novo diagnosis — so that was my original diagnosis, but I was stage IV from the beginning, February of 2019, and I've continued to work during that time. 

I'm getting to the point where I'm ready to stop working, if that’s doable with all of the insurance issues, and that is where my question falls in. If, say at the end of this school year…our school year goes through the end of June. So, July 1st, if I were to file my application for Social Security Disability and they were to look at that and go back to February of 2019 as my date of disability. 

Joanna Doran: They will not. 

Female Speaker 4: They will not. Okay. Well, is that just from when you can no longer work at all?

Joanna Doran: Exactly. Because you have to think about it from their perspective. All they care about is, can you work? So, it’s also interesting because generally when somebody is diagnosed, from the day before you were diagnosed to the day you were diagnosed, in terms of your ability to work nothing changed. Once somebody starts treatment and has side effects from treatment that it starts to impact their ability to work. And so, usually, I'm totally generalizing here, but usually in the cancer context it’s not the date that you were diagnosed that they will decide is your disability onset date, which is their term, it’s usually the date you stop working. So, if you stop working on July 1st they are going to likely look at that from July 1st.

Female Speaker 4: Okay. So, even if during these last six years that I've continued to work, it has been where I've had to get accommodations in order to continue that. Would they start it at the time that I was having to have accommodations to be able to do my job?

Joanna Doran: No.

Female Speaker 4: So, you're basically punished if you continue to work. Like if you muscle through, and you're working through those side effects and symptoms, then you are just punished on the naughty list for being tough and hanging in there, right?

Joanna Doran: Well, I don’t know that they would put it that way and I wouldn’t put it that way. Because this program is about, can you work? You're getting cash benefits not because you have a medical condition. You're getting cash benefits because you can no longer work. If you're able to work, they’re not going to approve your application even if you have a medical condition on the Compassionate Allowances list. I mean, that’s really the interesting thing about a medical condition like cancer, is that cancer impacts everybody very differently. Treatment impacts everybody very differently. So, that’s why they never say, "Oh, everyone with cancer has a disability according to the Social Security Administration." They always look at it individual by individual. 

Female Speaker 4: Okay.

Joanna Doran: And so, unfortunately, the practical side of that is, yes, it does feel like you're being punished for suffering through and pushing through to be able to continue to work, but from their eyes that’s what they expect you do. And it’s only when you are no longer able to work that you're going to qualify for these benefits. So, that’s how they’re looking at it. And that’s also why it’s so important that when you apply for disability benefits that you're sharing everything. Like every side effect, whether it’s physical or mental because sometimes it’s not one thing that would keep someone from being able to work, it’s the totality of the circumstance that pushes you over to not be able to work anymore. 

Female Speaker 4: Right.

Joanna Doran: So, you don’t want to minimize any of those details. You want them to have all of the details, all of the side effects. And not just with the Social Security Administration, but with your doctor because you want those side effects to be documented in your medical records. Because if you tell the Social Security Administration you're experiencing all of those things, but it never shows up in your medical records, then they're going to think that you're not telling the truth. Which is a horrible thing to say, but that’s the reality of the situation. So, you want to make sure that all of that information is being shared with your healthcare team, so that it is documented, so that if you do apply that documentation is there to support why you actually qualify for these benefits. 

Female Speaker 4: Okay. And then, follow up question to that is with the 24-month wait period for Medicare to kick in once you have been approved, do they do any sort of backdating with that as far as…or is it just 24 months regardless.

Joanna Doran: It’s 24 months regardless and there’s a lot of confusion about this. I was mentioning that Quick Guide to SSDI, the timing of SSDI and Medicare. The Medicare date is two years from your entitlement date. So, that’s a date we haven’t talked about yet. So, you have your disability onset date, then you have your five full months of waiting for benefits, and then you have your first month of where you're eligible for cash benefits. That first day you're eligible for cash benefits is your entitlement day. So, you're eligible for Medicare two years from your entitlement date. 

Female Speaker 4: Wow.

Joanna Doran: So, it’s not two years from your application date. It’s not two years from your disability onset date. It’s not two years from your approval date. It’s two years from your entitlement date. So, that’s why we say you qualify for Medicare after you’ve been receiving SSDI benefits for two years because that’s the time period you actually start receiving the cash benefits, is your entitlement day. 

Female Speaker 4: Alright. Thank you very much. I appreciate it. 

Joanna Doran: Of course. 

Melissa Jenkins: [Redacted].

Female Speaker 5: I was diagnosed with two kinds of breast cancer. One was hormone positive, and the other was triple-negative in 2021. I had a double mastectomy in 2022 and then also had lung cancer in 2023. I worked through the entire process, and it wasn’t until July of last year that I kind of had a mini-mental meltdown, if you will. So, I went out on short-term disability. Well, I went out on FMLA and signed up for short-term disability at the same time. So, I was getting those benefits up until they expired. Then I transferred to long-term disability. I was fortunate enough — I'm still working, I'm still employed. I'm not actually in the office, I'm considered "on leave" — but I am still getting medical benefits through my company currently. 

I was lucky in that the organization that oversaw my long-term disability kind of partners with an attorney who helped me file for social security benefits. So, I was fortunate in that respect that I had that help in filling out the paperwork. I understand I've been approved for social security. So, I just got that notification about two weeks ago. So, I guess my question more is with the actual healthcare benefits and how that is all going to work, because I'm sure my ultimately my job is not going to support my continued employment. In fact, they had intended to terminate me May 1st, but I submitted additional paperwork from my oncologist because I had gone out initially on a mental incapacity, now I've been diagnosed with triple-negative metastatic breast cancer. So, it’s now a medical issue. So, I've kind of been having my feet in both genres of SSI, but I'm more concerned with the medical benefits and how that’s going to impact me once they terminate my employment. 

Joanna Doran: For the health insurance coverage that you have right now through your employer, are they paying the premiums or are you paying the premiums?

Female Speaker 5: I pay part of it, and they pay into it as well. 

Joanna Doran: Okay. So, it sounds like they have just kept you on their health insurance policy. So, if at some point in the future…it also sounds like maybe they’ve gone above and beyond what their regular policy is. But my first suggestion is to see if there is any information in writing that says, a) they’ll hold your job for you for x period of time, and b) if they maintain your health insurance coverage for x period of time. Because it sounds like based on the timeline that you’ve already gone past what they’re legally required to do under the FMLA. So, it sounds like maybe now it’s their policy or you could even be beyond their policy and they’re actually doing something nice in keeping you on the health insurance coverage. 

But if at some point they decide that they cannot keep you on the payroll and provide you with access to the health insurance coverage, then you would have some different health insurance options. So, you would have access to COBRA, as long as the employer has more than 20 employees. And then, if it’s less than 20 employees you might have access to a state COBRA law, which allows you to keep the same employer policy, but you would then be responsible for paying 100 percent of what the employer was paying for your health insurance coverage. 

There are some ways to pay for that. So, if you also qualify for Medicaid, Medicaid might actually pay your COBRA premium for you if you wanted to keep COBRA. If you didn’t want to go the COBRA route, you could also look at the Marketplace to see what your Marketplace options are, but you would also want to make sure, you know, what’s the cost of the plan? Does it cover your providers? Does it cover your prescription drugs? And we have a lot of resources at Triage Cancer to help you, a) understand your health insurance options and then, b) actually compare those options so you pick the best plan for you. 

And then, outside of Marketplace and COBRA, then also looking to see... do you qualify for Medicaid in your state, would be really the third option. And then do you have access to other types of group health insurance coverage? So, we generally ask people things like, "Do you have a spouse? Could you move to a spouse’s employer plan?" For young adults under the age of 26, they can actually go back on their parent’s health insurance coverage until they turn 26. So, looking at other group health insurance options would be an alternative and then until you would qualify for Medicare. But I will just mention something, that because you were on short-term disability and then moved into long-term disability, they might actually look at your disability onset date back to the day that you left work on your short-term disability plan. So, you might actually qualify for Medicare sooner than you think, but you would have to do some math to figure out when that would actually be. And those are things that we could help you do. 

Female Speaker 5: Okay. Thank you.

Melissa Jenkins: Thanks so much. [Redacted]. 

Female Speaker 6: Thanks, Melissa. I should be eligible for Medicare soon, in fact, I have already gotten my cards, and I think it says August of this year. When I am eligible for Medicare, will my Medicaid continue, or will they discontinue it?

Joanna Doran: So, becoming eligible for Medicare does not make you ineligible for Medicaid. In fact, there’s about 13 million people in the United States that actually have both Medicare and Medicaid together and that’s actually very comprehensive health insurance coverage because Medicaid acts as a supplement to Medicare and will pick up many of the out-of-pocket costs for Medicare. It also gives you access to things that Medicare doesn’t cover. 

So, depending on the state you're in it could mean dental coverage or vision coverage, or other types of services that Medicare actually doesn’t cover. So, that coverage together can be very helpful. Where sometimes people get kicked off Medicaid is because when they’re SSDI starts, it increases their income level so that their income level is too high to keep receiving Medicaid. So, that is potentially a situation where someone might lose their Medicaid, but just becoming eligible for Medicare doesn’t do that. 

Female Speaker 6: I've been on SSDI now for a little over a year and I still remain eligible for Medicaid, so I should be fine. 

Joanna Doran: Then that sounds like you're good. 

Female Speaker 6: Okay. Thank you so much, Joanna. 

Joanna Doran: Of course. So, I haven’t been seeing all the things happening in chat. So, if I missed something please feel free to let me know. 

Melissa Jenkins: I will, I will let you know. Anybody else have some questions? [Redacted] you had your hand — oh, [redacted], go for it.

Female Speaker 7: Thank you, Joanna. This is very helpful. So, my question is, I'm wondering, what’s available, if it changes state by state?

Joanna Doran: It does, but not anything I think I've talked about so far. So, one example, I mentioned state COBRA laws. So, COBRA is a federal law that only applies to employers with 20 or more employees. So, if you work for an employer that has 2 to 19 employees, they are what we call state COBRA or mini-COBRA laws, but not every state has one. So, in order to figure out if you are in a state that has a state mini-COBRA law you could actually go to our website. We have state specific information in two places. We have state resources, which talk about the protections that are available and the programs that exist in those states and then the contact information for how to get to those programs. We also have charts of state laws, mini-COBRA laws is on our charts of state laws. So, you can look at the chart see does your state have that program, and then there’s a link to the program from there as well. But generally speaking, what we’ve been talking about related to SSDI and Medicare, that’s all federal. 

I had a thought, [Female Speaker 3], based on your question. You were asking about applying for SSDI and waiting for the application to be approved. You mentioned that you were in California. So, have you applied for state disability insurance in California?

Female Speaker 3: I was on state disability for the 12-month maximum. You could go on for either 12 months or whatever the total dollar amount that would be allotted to you and mine ended up to be 12 months. I did have another question following that though. Since I've already done this application, can I go back and reapply under the Compassionate Allowances?

Joanna Doran: Definitely, don’t do that. 

Female Speaker 3: Okay. Okay.

Joanna Doran: So, the Social Security Administration hates it when people reapply while one application is still pending because it creates basically another file for you. And so, you definitely don’t want to do that. People also try to reapply if they get denied and you don’t want to do that either. If your application is denied for disability benefits, you want to appeal a denial because basically when you applied you started a clock. So, if you are in the middle of that process and you don’t appeal, but you start the process over again you're starting your clock over again. Which means you're not going to be eligible for all those months of back payments and retroactive payments if your application would be approved through the appeals process. If you reapply, it starts your clock over again and you don’t want to do that. Besides irritating the Social Security Administration, you don’t want to lose out on those benefits. 

Female Speaker 3: It hasn’t been that long since I actually applied. I was just wondering because I'm sure it will be stuck in this little, you know, step 2 for a while. 

Joanna Doran: Yeah. And they don’t make it easy to communicate with whoever is making those decisions, but you can still try to reach out to whoever your point of contact is to say, "I just want to confirm that my application was flagged as a Compassionate Allowances application."

Female Speaker 3: Okay.

Melissa Jenkins: [Redacted] had a question: So, SSDI is literally a safety net only when you can no longer work and can show proof of that everywhere. Is there any change to SSDI in the new bill being pushed through?

Joanna Doran: No. Rarely do I get to answer a question that succinctly, but there have been proposals in Congress in the last few Congresses to actually eliminate the waiting periods for SSDI and for Medicare, both for everybody, but also for individuals with metastatic breast cancer, but those bills have not made it out of committee and I haven’t yet come across anything in the proposed reconciliation bill that changes that. We will certainly push that out on the blog if we find that in the language. 

I did also just want to comment on something. In the chat around if you hire an attorney in the SSDI appeals process, you absolutely do not need to hire an attorney to apply for disability benefits, but if you do find yourself in a situation where you're appealing a denial and you get to an administrative law judge stage, that’s a hearing process. But I always say it’s not like any courtroom TV drama you’ve ever seen. It’s just the judge and you, and if you brought somebody to represent you, and a vocational expert. And it’s the judge who asks the questions. 

So, they’re going to ask you questions like, "Can you work? Tell us how your medical condition keeps you from working? So, you know, how long can you sit? How long can you stand? How much can you carry?" So, they try to ask questions to get at how your medical condition impacting you. I always say if I were going to an SSDI hearing, I would hire an SSDI attorney. Because those attorneys work every day with the same judges and the same vocational experts because they’re geographically specific to where you live. And so, it can only be helpful to have an attorney who a) knows the process, and b) knows the people and how the judges want their information presented and are more likely to accept certain types of evidence, things like that. So, it can be helpful to have an attorney at that stage, but it’s also not required. You can absolutely go to those hearings without an attorney and have that same conversation. 

If you do hire an attorney, it is a very regulated process. So, those attorneys are only allowed to you on contingency, which means they only get paid if you get your benefits. And they’re capped, so, you can only be charged up to 25% of your back payments, specifically, and that is also capped at $9200. So, that’s the most that they can get paid out of your back benefits. And they get paid directly from the Social Security Administration. So, the judge effectively approves the attorney’s fees and then the attorney gets paid directly from the Social Security Administration. So, the attorney isn’t going to come to you then and charge you for those back payments. I just wanted to share some of that. The reason it is set up this way is to try to avoid people getting taken advantage of and so we want people to know that these are what the rules are. 

Melissa Jenkins: [Redacted].

Female Speaker 8: I'm kind of similar to [Female Speaker 4] where I've been working this whole time. So, I guess my question is with that. I've been treading water with this and missing a couple days of work a month for my infusions and side effects. I've just kind of been plugging along, but I'm just tired at this point. So, I don’t know what to do. When I talk to my doctor at the cancer center, I ask like, "Can you just give me a note to not return until the end of June and I can just take a few weeks off and catch my breath, and do this and that." And they were like, "Well, we can't really do that. It’s got to go through the disability office and FMLA." So, they gave me a form, like an intake form, to say do you want intermittent or continuous block leave. And I'm like, I don’t know. 

And then, anytime I've asked my metastatic breast cancer group, they’re like, "Well, find out from HR, but don’t tell them," and then so I could really…because I work for the state in Hawaii and I have state benefits, but I tried to find out like, well what are the short-term, like what are my benefits and it’s not really specific. So, I'm kind of stuck, I don’t know what to do. That’s what I was going to ask when [Female Speaker 4] was asking that question, are they going to be like, "Well, you’ve been working these past nine years." Should I just like stop working and then run my benefits out and then apply? Because I can't apply right now because I'm working. This is where I'm at. 

Joanna Doran: Those are all really good questions. So, I take it you live in Hawaii. 

Female Speaker 8: No. I actually work remotely now. I live in Florida, but I work for the state of Hawaii. 

Joanna Doran: Okay. So, this would be a situation where I would say definitely contact our navigation program because we would want to do a little bit of research, specifically around your state employee benefits and understand that a little bit, because it’s very specific. The fact that you also live in Florida, you want to make sure that you have access to the protections that Hawaii is offering rather than Florida, because Hawaii is one of five states, and Puerto Rico, that actually has state disability insurance. That’s why I was asking [Female Speaker 3] about being in California because California has a state disability plan. 

So, understanding the FMLA and the ADA and how you can actually take time off work is part one and those are federal. But then understanding how that also interacts with any specific state employee benefits you have access to, plus state disability insurance in Hawaii would be the things that you would want to understand what you have access to and how they interact so that you could figure out what’s your path. Which ones do you take first and kind of in what order that help you meet your goals. So, if your goals are to stay at work, that would be a goal. If you think you’re going to be applying long term for SSDI, then I would say tap into your state disability insurance and that can help you bridge the gap between when SSDI actually is going to start giving you cash benefits. 

So, there’s some strategy involved in, like, tapping into each of those benefits and using them in an order that helps you meet your goals. If your goal is, I just need a couple months off, then looking at the FMLA is a good option. But then, you have to understand what paperwork you were given and how you can explain your medical condition on your paperwork that gives you access to that time off and also the support of your healthcare team to actually fill out that paperwork. And so, we do have a lot of resources there too. So, anytime someone is looking at completing paperwork and is concerned about how much information they want to share with an employer or even a potential employer, that brings up a disclosure conversation. And so, we have some resources around disclosure and making those decisions and understanding how much the law requires you to provide versus what sometimes employers ask you.

Female Speaker 8: Okay. So, I should make an appointment?

Joanna Doran: I would say, if that’s where you're at and those are the questions that you have, besides what I just shared with you, I can't give you more details because I would need some more information. So, I would say…

Female Speaker 8: Okay. All right. Thank you.

Melissa Jenkins: [Female Speaker 6]?

Female Speaker 6: In terms of going before a judge, I've done it twice and it was so long ago I don’t remember why anymore, but what I do remember and will never forget, it is the most intrusive experience I've ever had in my life. So, I don’t know how that works with an attorney. I don’t know if they provide support in terms of, "Hey, you don’t need to answer that question." But either be prepared or take somebody with you because it is emotionally grilling because they literally ask you every detail of your life. They’re more intrusive than doctors, if I can say that. I get that it’s their job, but it feels horrible. 

Joanna Doran: I think that’s a good comment. This is a very personal situation and you're sharing very personal things about how your health condition is impacting you and it’s also emotional. You know, a lot of people really like their jobs and it’s part of their identity, and that’s where they get their support from. And having to say, "I can't do it anymore," that’s hard for lots of people. Then you have to walk into a room and explain all of that to a judge that you do actually qualify for benefits, especially when they come to the table trying to figure out if you don’t qualify. 

Female Speaker 6: I felt like I was defending myself and it was really hard not to get defensive. 

Joanna Doran: Yeah. I think that’s a really good comment that you have to try to walk into it and not get defensive and acknowledge that this is what their job is. But I know some SSDI attorneys and it’s surprising how much medical knowledge they have as attorneys and that they really want to be able to provide benefits to people who qualify for them. And the truth of the matter is, the reason the system has gotten so complicated is that lots of people took advantage of the system, which has made it hard for people who do qualify for benefits. So, those are some of the practical aspects that are hard to get away from. 

Melissa Jenkins: Joanna, do you have a closing statement you would like to make?

Joanna Doran:  I mean, we’ve talked about a lot today. I would just say, you know, these are really complicated topics that rarely have simple answers and are super-nuanced based on the laws and where you live, and where you work, and the size of your employer. And so, I would just say that there are resources to help you figure it out and you don’t have to feel like you have to make these decisions alone. So, I would just encourage you to make sure you understand how the laws apply to you and how you can tap into them, and that Triage Cancer is certainly a resource that can help you.

Melissa Jenkins: Thank you. And as we just posted, we look forward to seeing you if we don’t already see you in our other groups and continue to make suggestions. This one was actually more or less a request from [Female Speaker 1]. So, we love suggestions on special meetups. Joanna, we so appreciate your time and expertise, thanks you so much, and we really appreciate you all showing up today with your questions. 

Thank you for listening to The Breastcancer.org Podcast. Please subscribe on Apple Podcasts. To share your thoughts about this or any episode, email us at podcast@breastcancer.org, or leave feedback on the podcast episode landing page on our website. And remember, you can find out a lot more information about breast cancer at Breastcancer.org, and you can connect with thousands of people affected by breast cancer by joining our online community.