How You Can Get Financial Help for Myeloma

- [Robin] Welcome to the International Myeloma Foundation's Living Well with Myeloma series. Today, we will cover financial and other resources for myeloma patients and caregivers. I'm Robin Tuohy, vice president support groups, and it's my pleasure to introduce our speakers. First, we'll hear from Beth Faiman, who will provide an overview of communication strategies. Next, Rebecca Zeiter will discuss how a social worker can help you. And we'll round out the program with Shontia Gamble, who will provide information on financial navigation. In between each speaker, we'll have some discussion and time for your questions. And now, this is an important slide, we're always so grateful to our sponsors so we can continue to bring these helpful programs to you. So tonight, we thank Bristol Myers Squibb, Janssen Oncology, Oncopeptides, and Takeda Oncology. So now let's get right to it. It's my pleasure to turn this call over to Dr. Beth Faiman.

- [Beth] Thank you so much, Robin. It's always so nice to hear your voice, and thank you for having us join you tonight. I'm joined tonight by three of my colleagues, and as you heard, I'm Beth Faiman. I'm from the Cleveland Clinic and I'm a founding member on the International Nurse Leadership Board. Rebecca Zeiter is an expert social worker. You'll hear from her today. She is working with just the multiple myeloma population at our clinic. We're also joined by another social worker, Shontia Gamble, and she is a whiz, as is Rebecca, at finding resources.

So I thought, what better group to bring to you today to help answer your questions and share some resources for you. As Robin had mentioned, we're gonna do very quick, little presentations, but we wanna hear from you, we wanna hear your questions. As Robin mentioned, a very good way of asking your question would be to type it in the chat box. If we don't have time for all of your questions as we're on this webinar, we can always circle back to you. You also have resources such as the InfoLine that we'll put up the phone number to again if you haven't had that, the 1-800 InfoLine number. I think it's 452-CURE, but I will double check that for you.

We'll start with an overview tonight on communication strategies, how to talk to your healthcare team and who is your healthcare team? And you do have a voice in your treatment so don't forget that. The social workers can really, really help you, but not everybody has access to a social worker. Rebecca will share strategies that can benefit you. And then finally, we're gonna provide an introduction to financial navigation with Shontia. She's gonna share with you some of her tips as to how to access financial copayment assistance.

So here's me going on with the overview. The focus of this, and this is just a few short slides, is to underscore how important you are. You are our most valuable partner, not an MVP player, you're a partner in your healthcare team. I hope each and every one of you feel a sense of community and confidence in your providers and your team. It's oftentimes built of a doctor, a nurse, and others. We'll talk about that.

We want you to continue to gain knowledge by joining in on these webinars. Some very well-vetted social groups, such as on the Facebook groups and the others are good, too, and the support groups, which we'll talk about how to access virtual support groups later on, and bringing your A game. So there's such a strong evolution in healthcare. It used to be that doctors knows best, the paternalistic view of medicine, where I'm your doctor, you have multiple myeloma, and you need this treatment, and that was it. Now we have primary care providers, financial navigators, social workers, specialists, friends, support networks, and all of these are very important and play important roles and they are all on your team.

You and your caregiver, whether it's a formal or an informal caregiver, anybody that you can rely on, you are central to our process. Our goal in life is to make sure that you get the resources and the treatment you need to live the best life that you can. We want you to be empowered to participate in decisions even though you might not always feel like you can. This is important, because look at this graph, and you might have seen this before, I like to show this slide.

From 1960, we used melphalan and prednisone to treat myeloma, and in 2021, we have numerous drug approvals already this year. I meant to put in the link to Dr. Durie's webcast. He just had some important updates, so we won't be talking about drug updates tonight. But because there are so many medications available to treat your myeloma, it's important to share some of your side effects with your partners and your healthcare team, your doctors, nurses, social workers, et cetera, anybody that can listen, because what we do, pardon me, is we balance the medical experience, clinical trials, we look at your disease characteristics.

How effective is the regimen? We look at your finances and insurance. Can you come to the clinic every day or three days a week? Or should you be able to take medications at home? These are all important components to when we're arriving at something called shared decision making. So when we're deciding on treatment for you, it's usually the healthcare team sits with the patient or their significant other, caregiver, or friend, and you mutually discuss what options are out there. What can I afford? What can I afford time-wise by leaving work to come and get treatment? Can I get the treatment early morning or late afternoon, et cetera? So making sure that we are hearing your top priorities.

Of course we want potential longer disease remission, fewer side effects, many of us want that, but it's the cure versus control that's sometimes just as important. But arriving at a treatment decision together that you feel comfortable you can afford, you can come to the treatment center for, and that's good for your treatment and your myeloma is really important. Because the different treatments we give you will provide side effects and the disease itself can provide side effects, so knowing how your blood work works, when we go over into our office visits, we wanna go over how your labs work, you know, are you in remission? Are things starting to creep up, or are you in a great remission?

And then we wanna ask you about your side effects. So be open about your symptoms and side effects. In numerous studies, sometimes people feel like it's an accepted part of their care and then question their decision as to what they opted in for in terms of treatment, so I think it's really important to have that voice in your healthcare team. Adapting a healthy lifestyle, you've seen this slide before, probably.

I just love emphasizing because I've been doing this for over 20 years, and in the 1990s, we did not have very effective treatments. They provided a lot of negative side effects and then people didn't do as well. Now we can talk about stress reduction techniques, keeping active, stop smoking, talk about all of the important things in your life. Planned treatment holidays, go on a vacation if you want to. These are things that many of you can go through. And then don't forget your preventative screening and your primary care visits, because we wanna make sure to keep you healthy and living well longer.

And gosh, that was a quick crash course in talking with your patients, but I've come to very well realize that you all wanna hear from Rebecca and Shontia about how they can help you with all your questions and answers. I've seen a flurry of them coming in already so I will pause here before we go into the next... And, oh, gosh, I'm looking at a lot of these and they're excellent questions that I know are going to be addressed by our participants. So can we just alter the program a little bit, 'cause there's nothing related to mine? Can we alter the program, and can I get right to Rebecca and Shontia? So they're gonna hopefully answer some of your questions. And if they don't, then we can have plenty of time for the question/answer. What do you think, ladies?

- Agreed.

- That sounds good.

- [Beth] Before we go to that, can I just ask you real quick, Shontia, do you ever have anybody coming to you and saying, you know, "My treatment team had picked this medicine for me and it's really expensive"? And did they ever ask you what your thoughts are? You know, "Should I take this medicine, or can I find any resources for that?" And I'm sure we're gonna get into that more, but do you hear these questions routinely, Shontia or Rebecca?

- [Shontia] I do. I hear that quite often. Patients are just concerned about the cost, the high cost for their treatments and their medications. And what I try to do is work with them and put them in contact with different supportive services to help reduce those costs.

- [Beth] That's wonderful, . Yes, unfortunately, too often, but I can't wait to hear your tips and tricks for helping us. And I think at this point, I am going to turn it over to Rebecca. She's gonna provide an introduction to social work, talk about types of distress and employment questions with a cancer diagnosis, Rebecca?

- [Rebecca] Yes, thank you, Beth. Thank you. And really quickly, I just wanna say, Shontia and I are together today but we are both vaccinated and we work together every day. She's part of my, quote, unquote, inner circle, so to say. So we are unmasked but we're safely doing that. I just wanna briefly introduce the role of social work, ultimately, let you know what we do and how we can help. And especially if your facility does not have social work available, what can you do to find the support you're looking for? Oncology social workers, we are master prepared. We have special training to assist patients and their loved ones with practical and emotional issues. And ultimately, to the best of our ability, although we don't fully understand by any means, we are there to empathize how difficult the cancer journey can be. Next slide, please.

How can we help? First and foremost, I think that the big misunderstanding is that social workers are only there in times of distress, and that's absolutely not the case. If available, we prefer to actually meet patients in the beginning of their journey, or as much at the beginning as possible. We calm fears and anxieties associated with a cancer diagnosis. We connect individuals, patients, families to other patients and families going through a similar journey so that you don't feel like you're necessarily on an island all by yourself.

We do assess mental health and, of course, meet those needs if necessary. We communicate with your healthcare team. We can talk to children, or tell you and provide support on how to talk to children about cancer. We help you adjust to those changes, the losses, and especially that uncertainty that a lot of people go through. Practical concerns, such as transportation to appointments, insurance, financial assistance, which Shontia, of course, will dig into more detail on.

And then advanced directives, healthcare power of attorney or living will. These are two documents that actually are recommended to anyone over 18, but unfortunately are often brought up in times of uncertainty, so there's a lot of stigma around that. So we really help to break those barriers and make sure that your voice is heard throughout the entire journey that you're on. And then we do work through distress, and I'll give a little more detail on that. Next slide, please.

Distress, what does that mean? It can mean a variety of different things, as you can see. From practical issues, how am I gonna get to my appointments? Family issues, I'm a caregiver for a loved one and now I have this diagnosis. Emotional issues, of course, there's a lot of emotional issues going on. And I don't even know if that's issues. I would say I would normalize any change in emotion if given a new diagnosis of multiple myeloma, so helping you through that. Spiritual concerns, if there's questions or, ultimately, you have spiritual concerns facing this diagnosis. Physical pain, of course, walking or getting around or mobility might be limited due to this diagnosis, helping you through that. And then financial, and we are gonna dig really into financial tonight. Next slide, please.

Ultimately, when I work with individuals in financial distress, a lot of times, this diagnosis might mean a change in employment. So the questions always arise, should I keep working? Your ability to work during treatment depends on a lot of different things, such as types of treatment, the stage that you're in, your overall health, and the kind of work you do. Thankfully, as Beth pointed out, there's a lot of new treatments available, a lot of more understanding to myeloma and, therefore, diagnosis is happening earlier, so this means that we're working with younger and younger individuals, individuals who are still working. So I really do work with patients and families on employment concerns, working through the Americans with Disability Act and the Family Medical Leave Act, and what does that mean in your situation? Next slide, please.

So what if you can't work? Ultimately, when I work with individuals who still are employed, the first thing we talk about is looking into short-term disability. So that's, of course, if you're especially needing to go to multiple treatment appointments and you might not have a job that's flexible with hours or maybe side effects of treatment are not allowing you to work to your full potential, fulfill the job you were doing before. The first step is, of course, to talk to, if available, your HR department at your work, if that's available. It can be purchased individually, it can be offered through employment, so that's sort of the first step to see kind of what your options are with short-term disability. Long-term disability, of course, if that is needed and, ultimately, it is felt that you would qualify for that, that also can be purchased individually or can be offered through your employer or there are two federal disability programs that I'm gonna get into a little more detail on. So really, first and foremost, let's talk to your employer, the HR department, figure out the options, and then if not available, moving on to potentially the federal programs. Next slide, please.

So disability benefits. Many aspects of multiple myeloma diagnosis can present the uncertainty of employment, and therefore, long-term disability might be something to be considered. To qualify, there's two types of federal programs, Social Security Disability Income, that's your SSDI, Social Security Income, SSI. Ultimately, you must meet the medical eligibility requirements, so we're gonna look at the disability listing in the SSA blue book. We'll get into a little more detail on that. And then you also must clearly show that you have been unable to work for at least 12 months or that your cancer is terminal. That word is absolutely a trigger word, and terminal, I need to be clear on this, it might not be in the short term, but in the long term, could this diagnosis eventually be terminal? And ultimately, looking into that and talking to your medical team if that applies to you. Next slide, please.

Qualifying for benefits with myeloma specifically. So as we stated, the Social Security Administration has what they call, quote, unquote, blue book. This is where they list the diagnoses that qualify for disability or can qualify for disability. Most types of cancer are listed there, including multiple myeloma, and the specific number for that is listed there, that 13.07. If you do not meet a disability listing, then the Social Security Administration will perform what's known as a residual functional capacity assessment. So this is maybe your diagnosis doesn't qualify you, but there's other factors through this assessment that may. You and your doctor, or healthcare professional, advanced practice practitioners will fill out functional report forms. And as a social worker, I can absolutely help you navigate this and ask the right questions and get that paperwork in line. Next slide, please.

Ways to apply for federal disability benefits. For the Social Security Disability Income, this is going to be if you've worked and you have enough credits. You have to have enough credits to qualify for this program. You can go and complete your application online, by phone, or in person. I know in-person is a little tricky now, especially in COVID and the shutdown aspect, but they are still available, especially by phone if you prefer to talk to somebody. For SSI, that Social Security Income, that is specifically for the lower-income individuals, and also, if you don't have enough credits to qualify for Social Security Disability Income. That, you can apply by phone or in person at the Social Security office. You can apply online but only if you qualify for Social Security Disability Income first. So Social Security Disability Income, that SSDI, that will eventually get you that Medicare benefit after being disabled for 24 months. Social Security Income, if you don't qualify for Social Security Disability Income, hang in there with me, that will qualify you for Medicaid, that low-income insurance that can cover your healthcare treatments and prescription drugs. Next slide, please.

This is a time for questions, the grants and how we assist with grants. I definitely help with our financial navigators here, but that's where Shontia's gonna get into that detail. If you don't have a social worker or are currently not working with a social worker, trying to navigate that, ask your healthcare team, A, if that service exists where you are, but, B, if not, a lot of great organizations, including the International Myeloma Foundation, can help connect individuals to resources guiding you through the appropriate next steps. Thank you.

- [Beth] Thank you so much. That was wonderful. Can you briefly, Rebecca, talk to me about the terminal? Now, I think this is for federal, but I know sometimes... So the hospice definition is if you're only going to be alive for six months, you know, for long-term disability. Is that the same terminal? 'Cause we're all gonna die of something, right? But we're living so long with myeloma, that's the challenge.

- [Rebecca] So definitely, if it fits in with the blue book, that's one thing, right, that diagnosis code. If it doesn't, then talking to your medical professionals and figuring out, ultimately, a timeframe for that. It's really looking at... We tend to look at things, and this doesn't mean by any means terminal, it tends to look six months out. People with myeloma, thankfully, are living, honestly, decades at times, if not more, so really talking to your healthcare professionals and kind of seeing what might not allow you to work and prohibits you from working on that job, and then, therefore, what we also do at times, and, Beth, you can speak to this potentially, are ask for letters of support from our medical staff to kind of speak of why that individual may not be able to work and what that diagnosis really means.

We know, especially with myeloma, it's an internal diagnosis at times, meaning your body is fighting this disease, but externally, you may not, quote, unquote, look like that, right? We face this all the time. So really getting those healthcare professionals on your side and advocating to spell out for the disability office what you truly are going through and what this treatment and diagnosis means. I have tons of people who wanna work tomorrow, but physically, they can't due to either their bones or, ultimately, the treatment and the side effects associated with it.

- [Beth] Thank you so much for that. I think that helped. I'm often asked about this terminal diagnosis for Social Security and it's tough because I want people to have the opportunity to work. Sometimes we'll do shorter blocks of disability and that might get them through what they need rather than the long-term. So again, we have numerous questions, and guess what? I think they're mostly in Shontia's section, and we're gonna share so many resources. We should've just done yours first, right? And so all of you who've been typing in, please be patient.

We're gonna try to answer your question through her presentation, and what's not answered, we will get to you. Shontia is an expert financial navigator. She is gonna share with us ways she can help, or somebody like her, copay, free drug, travel grants, et cetera, and what do I do if I don't have somebody like her? Shontia, you're up.

- [Beth] Before we go to that, can I just ask you real quick, Shontia, do you ever have anybody coming to you and saying, you know, "My treatment team had picked this medicine for me and it's really expensive"? And did they ever ask you what your thoughts are? You know, "Should I take this medicine, or can I find any resources for that?" And I'm sure we're gonna get into that more, but do you hear these questions routinely, Shontia or Rebecca?

- [Shontia] I do. I hear that quite often. Patients are just concerned about the cost, the high cost for their treatments and their medications. And what I try to do is work with them and put them in contact with different supportive services to help reduce those costs.

- [Beth] That's wonderful, . Yes, unfortunately, too often, but I can't wait to hear your tips and tricks for helping us. And I think at this point, I am going to turn it over to Rebecca. She's gonna provide an introduction to social work, talk about types of distress and employment questions with a cancer diagnosis, Rebecca?

- [Rebecca] Yes, thank you, Beth. Thank you. And really quickly, I just wanna say, Shontia and I are together today but we are both vaccinated and we work together every day. She's part of my, quote, unquote, inner circle, so to say. So we are unmasked but we're safely doing that. I just wanna briefly introduce the role of social work, ultimately, let you know what we do and how we can help. And especially if your facility does not have social work available, what can you do to find the support you're looking for? Oncology social workers, we are master prepared. We have special training to assist patients and their loved ones with practical and emotional issues. And ultimately, to the best of our ability, although we don't fully understand by any means, we are there to empathize how difficult the cancer journey can be. Next slide, please.

How can we help? First and foremost, I think that the big misunderstanding is that social workers are only there in times of distress, and that's absolutely not the case. If available, we prefer to actually meet patients in the beginning of their journey, or as much at the beginning as possible. We calm fears and anxieties associated with a cancer diagnosis. We connect individuals, patients, families to other patients and families going through a similar journey so that you don't feel like you're necessarily on an island all by yourself.

We do assess mental health and, of course, meet those needs if necessary. We communicate with your healthcare team. We can talk to children, or tell you and provide support on how to talk to children about cancer. We help you adjust to those changes, the losses, and especially that uncertainty that a lot of people go through. Practical concerns, such as transportation to appointments, insurance, financial assistance, which Shontia, of course, will dig into more detail on.

And then advanced directives, healthcare power of attorney or living will. These are two documents that actually are recommended to anyone over 18, but unfortunately are often brought up in times of uncertainty, so there's a lot of stigma around that. So we really help to break those barriers and make sure that your voice is heard throughout the entire journey that you're on. And then we do work through distress, and I'll give a little more detail on that. Next slide, please.

Distress, what does that mean? It can mean a variety of different things, as you can see. From practical issues, how am I gonna get to my appointments? Family issues, I'm a caregiver for a loved one and now I have this diagnosis. Emotional issues, of course, there's a lot of emotional issues going on. And I don't even know if that's issues. I would say I would normalize any change in emotion if given a new diagnosis of multiple myeloma, so helping you through that. Spiritual concerns, if there's questions or, ultimately, you have spiritual concerns facing this diagnosis. Physical pain, of course, walking or getting around or mobility might be limited due to this diagnosis, helping you through that. And then financial, and we are gonna dig really into financial tonight. Next slide, please.

Ultimately, when I work with individuals in financial distress, a lot of times, this diagnosis might mean a change in employment. So the questions always arise, should I keep working? Your ability to work during treatment depends on a lot of different things, such as types of treatment, the stage that you're in, your overall health, and the kind of work you do. Thankfully, as Beth pointed out, there's a lot of new treatments available, a lot of more understanding to myeloma and, therefore, diagnosis is happening earlier, so this means that we're working with younger and younger individuals, individuals who are still working. So I really do work with patients and families on employment concerns, working through the Americans with Disability Act and the Family Medical Leave Act, and what does that mean in your situation? Next slide, please.

So what if you can't work? Ultimately, when I work with individuals who still are employed, the first thing we talk about is looking into short-term disability. So that's, of course, if you're especially needing to go to multiple treatment appointments and you might not have a job that's flexible with hours or maybe side effects of treatment are not allowing you to work to your full potential, fulfill the job you were doing before. The first step is, of course, to talk to, if available, your HR department at your work, if that's available. It can be purchased individually, it can be offered through employment, so that's sort of the first step to see kind of what your options are with short-term disability. Long-term disability, of course, if that is needed and, ultimately, it is felt that you would qualify for that, that also can be purchased individually or can be offered through your employer or there are two federal disability programs that I'm gonna get into a little more detail on. So really, first and foremost, let's talk to your employer, the HR department, figure out the options, and then if not available, moving on to potentially the federal programs. Next slide, please.

So disability benefits. Many aspects of multiple myeloma diagnosis can present the uncertainty of employment, and therefore, long-term disability might be something to be considered. To qualify, there's two types of federal programs, Social Security Disability Income, that's your SSDI, Social Security Income, SSI. Ultimately, you must meet the medical eligibility requirements, so we're gonna look at the disability listing in the SSA blue book. We'll get into a little more detail on that. And then you also must clearly show that you have been unable to work for at least 12 months or that your cancer is terminal. That word is absolutely a trigger word, and terminal, I need to be clear on this, it might not be in the short term, but in the long term, could this diagnosis eventually be terminal? And ultimately, looking into that and talking to your medical team if that applies to you. Next slide, please.

Qualifying for benefits with myeloma specifically. So as we stated, the Social Security Administration has what they call, quote, unquote, blue book. This is where they list the diagnoses that qualify for disability or can qualify for disability. Most types of cancer are listed there, including multiple myeloma, and the specific number for that is listed there, that 13.07. If you do not meet a disability listing, then the Social Security Administration will perform what's known as a residual functional capacity assessment. So this is maybe your diagnosis doesn't qualify you, but there's other factors through this assessment that may. You and your doctor, or healthcare professional, advanced practice practitioners will fill out functional report forms. And as a social worker, I can absolutely help you navigate this and ask the right questions and get that paperwork in line. Next slide, please.

Ways to apply for federal disability benefits. For the Social Security Disability Income, this is going to be if you've worked and you have enough credits. You have to have enough credits to qualify for this program. You can go and complete your application online, by phone, or in person. I know in-person is a little tricky now, especially in COVID and the shutdown aspect, but they are still available, especially by phone if you prefer to talk to somebody. For SSI, that Social Security Income, that is specifically for the lower-income individuals, and also, if you don't have enough credits to qualify for Social Security Disability Income. That, you can apply by phone or in person at the Social Security office. You can apply online but only if you qualify for Social Security Disability Income first. So Social Security Disability Income, that SSDI, that will eventually get you that Medicare benefit after being disabled for 24 months. Social Security Income, if you don't qualify for Social Security Disability Income, hang in there with me, that will qualify you for Medicaid, that low-income insurance that can cover your healthcare treatments and prescription drugs. Next slide, please.

This is a time for questions, the grants and how we assist with grants. I definitely help with our financial navigators here, but that's where Shontia's gonna get into that detail. If you don't have a social worker or are currently not working with a social worker, trying to navigate that, ask your healthcare team, A, if that service exists where you are, but, B, if not, a lot of great organizations, including the International Myeloma Foundation, can help connect individuals to resources guiding you through the appropriate next steps. Thank you.

- [Beth] Thank you so much. That was wonderful. Can you briefly, Rebecca, talk to me about the terminal? Now, I think this is for federal, but I know sometimes... So the hospice definition is if you're only going to be alive for six months, you know, for long-term disability. Is that the same terminal? 'Cause we're all gonna die of something, right? But we're living so long with myeloma, that's the challenge.

- [Rebecca] So definitely, if it fits in with the blue book, that's one thing, right, that diagnosis code. If it doesn't, then talking to your medical professionals and figuring out, ultimately, a timeframe for that. It's really looking at... We tend to look at things, and this doesn't mean by any means terminal, it tends to look six months out. People with myeloma, thankfully, are living, honestly, decades at times, if not more, so really talking to your healthcare professionals and kind of seeing what might not allow you to work and prohibits you from working on that job, and then, therefore, what we also do at times, and, Beth, you can speak to this potentially, are ask for letters of support from our medical staff to kind of speak of why that individual may not be able to work and what that diagnosis really means.

We know, especially with myeloma, it's an internal diagnosis at times, meaning your body is fighting this disease, but externally, you may not, quote, unquote, look like that, right? We face this all the time. So really getting those healthcare professionals on your side and advocating to spell out for the disability office what you truly are going through and what this treatment and diagnosis means. I have tons of people who wanna work tomorrow, but physically, they can't due to either their bones or, ultimately, the treatment and the side effects associated with it.

- [Beth] Thank you so much for that. I think that helped. I'm often asked about this terminal diagnosis for Social Security and it's tough because I want people to have the opportunity to work. Sometimes we'll do shorter blocks of disability and that might get them through what they need rather than the long-term. So again, we have numerous questions, and guess what? I think they're mostly in Shontia's section, and we're gonna share so many resources. We should've just done yours first, right? And so all of you who've been typing in, please be patient.

We're gonna try to answer your question through her presentation, and what's not answered, we will get to you. Shontia is an expert financial navigator. She is gonna share with us ways she can help, or somebody like her, copay, free drug, travel grants, et cetera, and what do I do if I don't have somebody like her? Shontia, you're up.

- [Shontia] Thank you, Beth. It's a pleasure to be able to speak with you tonight. Again, my name is Shontia Gamble, and I'm a financial navigator here with the Taussig Cancer Center. I've been in my role for about six years now. I like to think of my role as a hidden gem within the healthcare system, and that's because we're able to really get in there and work with patients and try to provide them with the services that is necessary for them to complete their cancer treatments. Some of my responsibilities include reaching out to patients. We conduct a benefit investigation for oncology services. We provide the estimated out-of-pocket costs so our patients are not shocked when they start receiving the statements from our facility. We also put them in contact with financial resources to help minimize the out-of-pocket costs for our patients. We address any financial concerns that they have and make the necessary referrals.

And what we do is, actually, we take care of the enrollment for copay assistance programs and we submit eligible charges over to either the foundations or pharmaceutical companies for reimbursement. Another major piece of my role is working with patients who may not have insurance coverage or whose insurance will not approve their chemotherapy. We'll work with the pharmaceutical companies to obtain the drugs at no cost to the patients because we want them to continue on with their cancer treatments. So we try to follow that same process throughout our patient's cancer journey. Next slide, please.

All right, so here's a list of insurance resources that we felt that may be beneficial for our patients. The Senior Health Insurance Information Program, which we also refer to as SHIIP, it's offered through each state and they offer free objective advice on insurance-related questions specifically for Medicare patients or Medicare-eligible patients. What they do is work one-on-one with patients and they will go over specific benefit questions, coverage, that sort of thing, and they also help with other insurance-related matters. I usually refer patients over to the SHIIP program if they maybe are going to look to retire and they're switching from a commercial insurance and going over to a Medicare plan. Medicare.gov is another great resource that I offer to patients.

You can go in onto their site, look at plans, Medicare plans, compare the costs, see what services would be covered or non-covered. And I really like that they have a great tool available where you can type in to see which service or test or lab work is going to be covered under their program, so it's a really great tool to use. Open enrollment for Medicare is October 15th and it ends December 7th, so that's something important to keep in mind. As far as government resources, there's just a couple that I'd like to go over with you guys. Medicaid is offered by each state, and if you're approved for Medicaid services, they will cover all of your in- or outpatient services.

And not only that, it's a whole wide range of services. Usually anything provided within the hospital setting, it would be covered under the Medicaid program. So it's usually available to patients who have lower income, but you can definitely reach out to your state's Medicaid office to see if you would qualify. Another underutilized program is through the Extra Help program. It's offered by the government. Extra Help is available for people with limited incomes, and they actually will help cover the Medicare prescription drug costs, your premiums, any out-of-pocket costs associated to your medical care. So that's another resource that's underutilized but patients do have access to it, so you would just need to reach out to your local Social Security office and they'll be able to discuss if you're eligible or not. One of the last resources that I would like to discuss is through healthcare dot, excuse me, HealthCare.gov. I'm sorry about that.

And through HealthCare.gov, there's agents available to help work with you and your family to see which insurance plan would be the best fit for you. The one thing that I would point out and suggest families to do is to be sure that whichever plan you're looking to choose is in-network with the hospital you're looking to receive your services in. And all of these resources are available on myeloma.org, and the link is provided here on the slide. Next slide, please.

So here is a list of financial resources that I commonly use with my patients that I speak with. Everyone has access to the medication assistance programs. I have had patients share with me that even though they have prescription drug coverage, when they use GoodRx or NeedyMeds, sometime the cost is a little bit less. So it's just good to kind of use those tools, weigh out the cost, see what's available, and then kind of go from there as far as the cost. The Co-Pay Assistance Program has a great assortment of financial resources for patients.

Not only do copay assistance programs cover the out-of-pocket cost for your treatments, they also help now cover cost of transportation, they will help cover the cost of your healthcare premiums, so kind of going in there and looking to see which one would be the best fit would be one of my suggestions for you. Okay, and I believe we can go to the next slide.

- [Rebecca] And something, too, I just wanna add is, as financial navigators, if one of the assistance programs is full, or what we say, closed, at the time that you go to apply, financial navigators can actually work to get patients on wait lists, so when that fund reopens, they can then enroll that patient into it. Isn't that correct?

- [Shontia] That is correct, and that's a really good point. And a lot of the foundations do have that option available too. I believe it's through email that they will get a hold of you and email you when the funds are available for you to apply. Okay, so we can go, or I believe Beth is going to go ahead and show us real-time access through the multiple, excuse me, through the myeloma.org foundation. They have great resources as far as pharmaceutical companies that offer copay assistance. So we're gonna see if we're able to access that real-time at this time. Okay, if not, we can go ahead to the next slide.

- [Rebecca] On the International Myeloma Foundation website, they list a variety of support resources specifically pertaining to medication assistance and the programs through those pharmaceutical companies. This is one example, although there's many other pharmaceutical companies that we work with and are so generous to our patients and families, but, ultimately, helping with the cost of drug.

- [Shontia] That is correct. Just to give a good example, Darzalex is offered through Janssen and they have a copay assistance program where I believe they will cover up to $20,000 towards the out-of-pocket cost for your treatments. So not only does Darzalex, or excuse me, Janssen have that copay assistance program, programs such as BMS is available, Revlimid, or Amgen is available for Kyprolis. It's a number of different copay assistance programs that will be able to help offset some of those costs.

- [Rebecca] So much great support out there from various drug companies.

- [Shontia] Absolutely. All right, can we go to the next-

- There's Beth, we hear you-

- Oh, there you go. Yep, we hear you now.

- [Beth] Thank you for hearing. I was muted by the organizer. And I did want it to go and share my screen. We wanna try this real time. I'm gonna share my screen for this Myeloma Foundation resources, and I'll just talk about it briefly. Ladies, can you see me on the myeloma.org website?

- [Shontia] Yes, the screen is shared.

- [Beth] Perfect. It's just a little delay. So if you wanted to get resources for yourself, you'd go into the bar and you'd type in myeloma.org and click on Resources and Support. And under the External Resources, there's Drug Reimbursement Information and Assistance. You click on that and it pulls up all of these things and it's almost every drug and all of the things that Shontia talked about with the different resources. Not only the drug companies and pharmaceuticals, we have the Centers for Medicare and Medicaid Services on here. So she talked about comparing healthcare plans. There's also a Health Insurance Resource Center and HealthWell Foundation, and these are quite often updated.

I also wanna turn your attention towards this third is the Housing and Travel Assistance. You also have different governments and guidance and supports for the housing and the travel assistance. And thank you for bearing with me, it's a little bit slow. I wanted to share with you, let's say you wanted a second opinion in a different state. Airbnb has a cancer support partnership, and if you need to even just travel to see another provider, they can help. There's also Air Charity Network, that used to be Angel Flight America, if you needed to fly somewhere, and different houses will put you in with kind of people that live around that area too.

So I'll stop talking about this here. What was the one other thing I wanted to share with? The videos will be here after tomorrow as well. But looking for legal assistance, pain management, and all of these different aspects of support that you might need can be found on myeloma.org. And you also have that InfoLine number as well. I'm gonna go to Shontia for this last little slide and then we have a gazillion questions. I wanna try to tackle as many as we can. So if you wanna just talk through this last slide. Thank you.

- [Shontia] Absolutely. Thank you. Thank you. So what do you do if a financial navigator is not available? A lot of times, people don't know that the title financial navigator maybe kind of change within your hospital setting. So they may be known as patient navigators, nurse navigators, or even financial counselors, and they will be able to offer support. So the first thing that I would recommend is to reach out to your doctor's office to see if there is someone that is willing or placed in the role to help with your out-of-pocket costs. If that is not an option or not available to you, I've provided a list of foundations that we commonly use, and they have case management services that is free for patients. You can go and give them a call and they'll be able to offer financial resources along with just supportive services that will help. Another tool that I like to use or offer to our patients is, there's financial resources, is through the Rhonda's Kiss foundation. They partner up with hospitals and they offer grants to help with the offset cost of hospital, well, and I should say the hospital, not the hospital costs, but the Rhonda's Kiss is for-

- [Rebecca] Various additional, if you have high bills, maybe utility bills, maybe high transportation costs, car repairs, those different costs that really add up that might not be covered over the copay assistance or the more prescription drug assistance programs.

- [Shontia] Exactly. Thank you. And then Mercy Medical Angels, they offer flights for distant patients. So patients that are out of state and need to travel for their treatments or for medical services, they will offer medical flights at no cost if you qualify. They also do offer gas cards that you can use for coming to and from your appointments.

- [Rebecca] Yeah, if you're more than 50 miles outside of your hospital system or medical building, they will provide those gas cards.

- [Shontia] Thank you.

- [Rebecca] And this is a plug for social work 'cause your social worker can help you connect to those programs. Shontia made a really good point that sometimes social work can also be called case management or other terms as well from other hospital systems, so it's always important to talk to your medical team and see what services are available.

- And I think there's a little bit of a delay. This is a slide that highlights the importance of finding social work, or, pardon me, support groups. Really, you can just go to myeloma.org, that same website I just shared, and you type in your zip code or your city or state and that will link you into the different support groups that are in your area. So while we're sharing resources today, you might be able to gather more resources from going into a different support group. And then don't forget that you're not alone. myeloma.org is the website. They have the InfoLine, which is 1-800-452-CURE, I knew it, and there is a worldwide number. Don't forget, there are tons of free resources that can be mailed to you from the IMF in numerous languages, I think, like, 50 or some, Robin can tell us, lots of languages to help as well. So that was great, and I think that's what we really needed to hear. What are those little tips and tricks to get stuff?

One of the things I wanted to emphasize that wasn't talked about before we get to some of your questions is I know we talked about copays and letting your provider know. Like I try to tell everybody, if I'm prescribing this antibiotic for your cough or this medication for your blood clots, and if they tell you it's too expensive, oftentimes I just need to pick up a phone and get a prior authorization and say, "This is a medicine that this patient needs." And then they will oftentimes authorize it. And that's also, too, Shontia had mentioned that GoodRx, you don't need an insurance card. As a matter of fact, you don't show it at all. And you can just go on and just type in the name of the medicine. Especially if it's just a short-term antibiotic or a short term medicine, it might be cheaper to pay for it through the GoodRx. They give you a little card and you go and download the app and we can help you share that as well. So that's just my two cents after that presentation. And gosh, should I start calling out some of the questions?

- Sure. Go for it.

- I'll start, so our very first person that typed a question at, I think, 7:01 asked, "I have a grant which is not enough to cover a year of copays. Do I have to wait until it runs out to apply for another grant from maybe a different foundation?"

- That's a great question, and that question does come up quite a bit. What I suggest to patients, a lot of times, the foundations do not like patients to have two open grants at the same time. So what I suggest is if there is a grant open with a separate foundation, reach out to them, let them know your circumstances, and that representative will let you know if it is okay for you to go ahead and apply, especially knowing that the out-of-pocket costs that you have with the existing grant won't cover it for the full year. So just work with the foundations and they're very approachable and willing to help answer that question.

- The other thing I will say, too, is working with your team to figure out what other types of grants. We mentioned that Rhonda's Kiss grant to help with utility payments, you know, various other expenses. Where else can we alleviate some of your burden of cost? If you have to put more money towards those copays, if there's no other options available, maybe we can alleviate your bills somewhere else to help you distribute those costs more evenly.

- That's a great answer too. And one of the things I tell my patients as well, oftentimes, depending on your type of plan, you might have a copay to see me as a specialist in the office, maybe telehealth visits might be covered 100%, and so finding out where your copays are and sometimes getting copayment assistance for that office visit might be available to you. Or if you're Medicare, looking at the open enrollment period, maybe there's a different plan that you could jump into. Does that sound right, Shontia and Rebecca?

- It does, it does. Great advice.

- Okay. All right, let's go to another question. "If I have supplemental Medicare and Medicare insurance, why would I need copayment assistance for my medicines?"

- Yeah, you wanna go for it?

- That is a great question. And I probably failed to mention it, but organizations such as the Leukemia & Lymphoma Society offers premium reimbursement, so patients who have dual insurance coverage can take advantage of the healthcare premium reimbursements and that money goes directly to patients and you can use that however you see fit. So it still is beneficial to enroll into copay assistance programs because you can use that, again, towards the cost of the healthcare premium or maybe your oral medications.

- And Medicare's going to pay an average of 80%, and then if you have that coinsurance, it tends to pick up the remaining 20%. So you're right, some people don't need this assistance. Or if you have Medicaid, maybe you have Medicare and Medicaid, that picks up 100% of the cost. But always just know who's on your team or who can help in case those plans shift in any which way, your medications change that aren't covered under your current drug formulary, because then, if ever those resources are needed, you know where to go and you're being more proactive with that.

- Absolutely.

- That's excellent information. And from my perspective, as a provider, sometimes I'll have people that have two separate grants and they're covering different things, but then now they have a new thing, like they have a blood clot in their leg from some of their cancer-related medication or condition. Sometimes, even though they're, you know, this might be a $200-a-month medication, I can get that covered through some of the grant funding from the cancer diagnosis, so just being open and communicating with your team about your finances. And I've also been successful in helping, sometimes, not all the time, the diabetes medication, so if you have steroids that cause high blood sugar and developed diabetes and now you need insulin, that can be quite expensive to manage. So it's other diagnoses, don't forget to ask your cancer team if there's any help that they might have available. So let's move on to the next question. Unfortunately, some people don't learn about the substantial debt that might be accumulated before learning about copayment assistance. Do any of you ladies have any suggestions for if they paid out-of-pocket for the last five months and now they have all this debt?

- Oh, that's a really good question too.

- Yeah, sure. So my suggestion would be to first reach out to your hospital team. Sometime the hospitals has a financial assistance program that can help with your existing medical bills. And I think that that would be a great start, and Rebecca can probably speak to some of the grants that may be available to help with some of those costs as well.

- Yeah, so as I talked about the redistribution of funds, so if we can't help with the actual medical bill, there might be other areas that we can help alleviate some costs so that you can put the money towards that bill. But I cannot say enough that when you receive that medical bill and there's a high cost to it, first and foremost, reach out to the medical team, as we keep saying. But also, there tends to be that number at the bottom of the bill, and that is exactly where Shontia was talking. If you call that number, simply say you need assistance, this is your circumstance, you can't pay that. Ultimately, there should be advocates on the other side to help you. The other piece of it, to kind of understand responsibility billing and what that means to you, there's usually local support resources. One of our local support cancer networks actually has financial lawyers, so we have the legal and as well as accountants, I should say, to kind of help navigate those other financial questions you might have and help you navigate how do you talk to the billing department to advocate on your behalf so that either, A, they're breaking that down into more reasonable payments, or B, potentially, and at times, alleviating that cost altogether.

I know specifically here at the Cleveland Clinic, and I can only speak for that, is that we don't want cost of care to ever get in the way of the treatment that you need and deserve. So please, please, please, if you get a high bill, reach out, if you don't have a social worker available, if you don't have a financial navigator, your medical team. And then helping to coordinate those community resources, and obviously, International Myeloma Foundation is a great one-stop that can help navigate you.

- That's excellent. Thank you so much for that. And I agree, there are so many different cancer centers across the country that have these same resources that we have. They're just not always tapped into, and going to the website of the myeloma.org will help clarify. Another participant said, "Please, please, please make sure that Vietnam veterans know that VA has accepted myeloma diagnosis to be an automatic 100% disability." This is excellent point. We have a lot of veterans and we can get their oral medications through the VA. We might see them for care and then they might get their oral drugs through the VA, which is nice. They also, first responders in 9/11, I think, is listed as a benefit and there are others so this is great information.

Let's go to another question. We had somebody asked about some things that were answered already, I think, about the financial assistance and qualification for disability. Another one, I think there's just a lot of concern, you know, "If I get into Medicare, why do I lose my grants from different pharmaceutical companies now that I'm on Medicare?" Are you able to share the answer to that question? Should we even answer that?

- Shontia and I wanna pull our hair out at times with this, but absolutely. From commercial insurance transitioning to Medicare, there are grants that are specific to Medicare access only. But I will say Shontia and I work together, ultimately, with patients to figure out those grants that do have Medicare access. There is one currently open, and I believe, I don't wanna misspeak on the organization but there is one currently open, so talking to your medical team about that.

But you're absolutely right. Some grants, if you have Medicare, what we say behind the scenes, and this is absolutely not true, but it almost appears they think that if you're on Medicare, you have money, which we know is absolutely not the case but sometimes that's how it can come off because these grants tend to drop off, thinking that, oh, now people have the coverage. So what I will say is there is a transitional period when you switch from commercial insurance to Medicare and navigating which grants are going to work with your new insurance, so talking, once again, to the healthcare team. I also wanna go back and point out the veterans aspects.

So I do work with many individuals who may be veterans but they're not yet service, they haven't connected to their service. They're not service connected, I should say. So they haven't reached out to the VA, established a provider with the VA, and therefore, can't yet access their VA benefits. What I will say is if you look up, in your local area, veterans service commissions or your local VA office, they can help you get established with that care, oftentimes being able to keep with your current hospital or medical facility while getting drug coverage through your VA benefit. So I just wanted to make sure 'cause that's absolutely a really good point. Our veterans deserve that coverage, and we thank everyone for their service.

- Yes, for sure. Thank you. Another question that came up, and I think that we kind of answered it already, but I think when you apply, one of the questions was how much do you have to make in order to apply for some of these grants? I will reemphasize, though, a lot of people say, "Oh, I applied for that and I was denied." Well, maybe it was two years ago and things have changed. So if you've applied for a grant and been denied for any reason, still let's try to reapply, especially if your situation changed, it's like one or two years or even months down the road. What do you have to, any thoughts, ladies, about the money to qualify for grants? 'Cause I think it varies per drug company and per grant and you just have to look at it, correct?

- Correct.

- That is right. That is right. And the only thing that I could suggest is if you don't qualify for the grant, if there's a specific medication, the pharmaceutical company may be able to offer that medication to you at no cost and their income requirements may be a little bit more free or lax than the foundation, so that's always another option that I do advise my patients.

- And we can also look, at times, the percentage of your income, what is that cost going towards a specific drug or drug treatment? That sometimes can actually override that initial denial if you exceed a certain percentage of your income towards that medical care. So there's a variety of different things that we look at, so please just reach out and we can definitely investigate that for you.

- Thank you. I think we're gonna take one last question for the night. I think Shontia will know the answer to this. Couple of the observations is that older bills are, you know, people are getting bills and it's been a lapse in time, maybe it wasn't sent out in a timely manner. Is there a statute of limitations as to when you can receive a medical bill? Because we're already struggling with income and then now you get hit with this bill. What are your thoughts?

- I believe it is one year that they have to send out the medical bills to you, and I wanna say that each hospital system may operate a little bit differently, but I would check with the billing department just to confirm. But if I'm not mistaken, it may be one year from the date of service that they have to send out the balance that you may be responsible for. But yes, just check with that individual hospital to clarify that and they'll be able to look into that as well.

- That's great. Gosh, I'm overwhelmed by all of the questions and a lot of them are all just so good. Can you just say again which organization provides gas cards and other miscellaneous kind of cards? I think it's amazing, like, I'll go into a room to see a patient and then they'll be so excited, jumping up and down, because Rebecca and Shontia helped them get a Visa card for their money, for their groceries, or a gas card, they can go back and forth. And it's just like, you know, it just brightens their day when you're struggling with all of their costs of care. And patients don't even know that little things are available, but you've shared some of the websites and I think Rhonda Kiss is one of them, as well as others, and they're all on the myeloma.org website. Anything else you can think of? Any last pearls of wisdom before we turn it over to Robin Tuohy again?

- I will just say this. Please, I give this example all the time, I had a patient who felt like they had to actually sell some land in order to pay for medical bills, and I was heartbroken because I found that out afterwards. So ultimately, there is support available. There are tons of advocates who are in your corner just wanting to make sure we get you the care and, hopefully, the finances that you deserve and that are available.

So please reach out to your medical team, ask, it never hurts to just ask. And know that you didn't ask for this diagnosis, so even if you think, "Oh, I make enough money or I have enough money, I could afford this." Let's see if you qualify. You didn't ask to have multiple myeloma. We wanna help you.

- Shontia, one more from you.

- Sure, and just to take a step back to the question that was asked about supportive resources, I love to support or provide my patients with the Leukemia & Lymphoma Society. They have a whole separate kind of fund that's available for financial resources, and they have a patient aid grant, it's a $100 grant that can go directly to patients. I just wanna say, it's very important to just ask, as Rebecca stated. Work with your clinical team to see what resources are available because there's a lot of good money out there that will be able to help with those costs. Thank you.

- Wonderful. Well, thank you so much, ladies. We're over time now. I'm gonna turn it over for the closing remarks by Robin Tuohy, and I hope you found this helpful and will share some of this information with your friends in your support groups. Thank you.

- Thank you.

- Thank you.

- [Robin] Thank you, ladies. You are like angels on Earth to help us navigate through these financial challenges. It's enough to be diagnosed with myeloma, but then the financial burden as well for patients and caregivers can really make you feel just overwhelmed and alone out there. So now we know we are not alone. We've learned from you. We know that we could call the IMF InfoLine. And again, that number to write down is 1-800-452-2873, which is CURE. And that is Paul and Judy and Missy and they're in California so they are 9:00 to 4:00 Pacific time. And if you did not get your question answered tonight, please call the InfoLine and they will be more than happy to point you into the right direction with resources and make you feel like you know where you can go to learn what you need to learn.

We had about 900 people registered for this webinar, so that's how important this topic is. And all the questions were so well answered, and again, we thank you. And one more thing I wanna put out there, that we have another webinar. If you're still excited about sitting online for another webinar, we've got one happening on Saturday, August 14th, and this one is going to be Best Myeloma Management in the Era of COVID-19. So I did see in the question box that there were some questions about managing myeloma, its treatment, its side effects, so that will be an excellent program. You can go to myeloma.org to register for that.

And I have to always give a special shout-out and thanks to all those resilient support groups out there that continue to meet safely and to be there for their local communities. If you're looking for a myeloma support group, you can reach out to me. You can go on the IMF's website and click on Support and find out where your groups are. And of course, a special thank you to the sponsors that continue to make this valuable program available. Tonight, we are thankful to Bristol Myers Squibb and Janssen Oncology, Oncopeptides, and Takeda Oncology.

So thanks to all of you for taking the time to be on this webinar. And to Beth and Rebecca and Shontia, thank you, thank you, you are amazing. And we hope everyone understands financial resources a bit better, and we wish you to have a lovely evening. Thank you, everyone.

- Thank you.

- Thank you. Have a good night. Bye-bye.

- Good night.