Skip to main content
 

Note: Transcripts of Frankly Speaking About Cancer Radio Show may contain errors. We strongly encourage you to listen to the audio of Frankly Speaking About Cancer Radio Show. Listen to the Full Episode.

Good afternoon and welcome to Frankly Speaking About Cancer with the Cancer Support Community. Your host is Kim Thiboldeaux, President and CEO of the Cancer Support Community. This hour is designed to inspire, inform and to help you live better with cancer.

Now, here is your host Kim Thiboldeaux.

Kim: Welcome to Frankly Speaking About Cancer, an internet radio show that focuses on informing and inspiring people to live well with cancer. I am your host, Kim Thiboldeaux, CEO of the Cancer Support Community. The Wellness Community and Gilda's Club have united to become a cancer support community, one of the largest providers of cancer support in the United States and around the world. Our services are offered at more than a hundred locations worldwide and online at www.CancerSupportCommunity.org.

Hearing that you or someone you love has cancer can be overwhelming, questions abound. Will I or my loved ones survive? How will my family be affected? Will my insurance cover my care? Will I be able to work through treatment or will I need to take time off from work? Will my family be burdened with huge expenses? For some, the questions come all at once. For others, they arrive one by one. Having a plan to deal with these questions is vital. It can be hard to ask for and accept financial help, much less know where to find this support during a difficult time.

On this episode of Frankly Speaking About Cancer, we are taking a deep dive into this topic to find answers to these questions and many many more. Joining us today to talk about what you need to know about the cost of cancer care is Amanda Holt. Amanda has almost ten years of experience assisting patients with insurance optimization and advocating for alternative funding for treatments. She was hired in June of 2014 as the financial navigator and certified application counselor for Maury Regional Medical Center. There, she has played a major role in the development of their Oncology Assistance Program. In addition to her position at Maury Regional, in April of 2016, she decided to take her passion for patient advocacy to the next level by becoming the financial specialist consultant for the Cancer Support Community. Thanks for joining us, Amanda.

Amanda: Yes, it is my pleasure. Thanks for having me today.

Kim: Good. We are going to jump right in because we have a lot of questions for you. But I would like our audience to get to know you a little bit before we dive into this sort of complex set of issues. Let us start by talking about you a little bit. Can you tell us about the role that you play in helping people navigate the financial aspects of a cancer diagnosis?

Amanda: Sure. Essentially, I am a pivot point for our patients. Ideally I meet them at the beginning of their treatment, provide them with general information, expectations, and then I follow them through their journey. We address issues when they come up but up front if possible at the time. These are all funny until issues that they may not know they might experiencing or they may be already experiencing at this point of diagnosis.

Kim: Amanda, how did you get started in your role as a financial navigator with Maury Regional Medical Center and also with our Cancer Support Community helpline?

Amanda: It is a funny story. A friend of mine actually referred me to the position. I worked in the home and fusion industry, I have always been somewhat I would consider a patient advocate and those roles that I played at home infusion. Through Maury Regional, once I interviewed and I got the job, this was a new program for them, this was a whole new concept. It was something that they actually contracted out with a company called Seven X and the Gilda’s Group and that is where I met Dan German.

Dan actually stepped in and helped us implement our program here to advocate for the patient, to focus on Oncology and then after a certain amount of time, then a year or so, Dan actually referred me over to the Cancer Support Community. Our program here been very successful and so I was excited to further that experience.

Kim: Amanda, from a broader perspective before we drill down on some specific issues, but in both of these roles what have you learned about the financial landscape facing people impacted by cancer? If you could sort of talk about it in broad strokes. I mean is it a challenging situation or folks dealing with a pretty significant burden under a cancer diagnosis?

Amanda: Wow, that is a loaded question.

Kim: I know.

Amanda: It is extremely complicated. Yes, essentially the answer is yes. I mean it is such a burden on not just the patient but their families, their caregivers, and it is not just about addressing the cost of treatment either in a lot of cases. It incorporates cost of living and survival during the process.

Kim: What do you mean when you say that? Give us some examples.

Amanda: An example would be let us say the person who has been diagnosed. Let us say that person is head of household, carries the insurance on his or her family. At this point in time, depending on the significance of the diagnosis and the treatment plan, potentially whatever happens to the patient, whether they can continue to work or not, affects the entire family. It could be catastrophic and not only that piece of it but having to come to treatments and schedule time off from work and still float your daily living is a challenge in itself.

Kim: Yes. I imagine, Amanda, that that can lead to a whole host of other issues. You are talking about sort of financial issues, financial challenges, but then that bleeds into everything, it bleeds into the ability to pay the mortgage, the ability to pay for basic needs that the family has. Does it really... Does it add to the stress that the patients are feeling? I imagine that is probably not a good scenario.

Amanda: Absolutely. I mean I think a lot of the stress initially is the unknown obviously. Just not knowing what to expect and I think that is where us as staff members, we can provide expectations and try to help relieve some of that stresses especially when it comes to the finances. I mean whether we like to think of it this way or not but money is our driver typically for our households, for our futures. That is just the fact.

Kim: I think we certainly know also that obviously when a patient is dealing with a cancer diagnosis, dealing with treatment, we want them to have the best outcome. I imagine the stress is probably not good for their cancer overall.

Amanda: Absolutely not. I think there is some statistics out there that actually prove that we have actually measured that the higher level stress or the less the stress the more likely they are to recover, to feel better throughout the treatment. I mean that is huge in itself.

Kim: Yes, yes. Amanda, just break down a little bit. I know patients oftentimes have financial needs and concerns as it specifically relates to the diagnosis. Things like I guess like co-pays and out of pocket cost sharing and then they have financial worries and concerns for things like you mentioned. Things like rent, things like parking, things like transportation. Can you just talk about those two sort of buckets of costs that patients are facing with a cancer diagnosis?

Amanda: Absolutely. I think you nailed it. One of the two things that the initial questions that I get from a patient who has a new diagnosis, a new consultation is. One, how much is this treatment going to cost me, or two, how am I going to afford to live while I am going through treatment? Transportation is a big deal especially when it comes down to radiation treatment. If you have a type of cancer you are going to receive daily radiation, well that... I mean radiation treatments themselves are kind of short appointments once you get on treatment but you still have to be here every day and depending on how far you live from the facility, yes that is one of the first issues usually that is addressed.

There are foundations out there that assist with those issues and we as a facility, we actually have our own foundation and we assist for transportation as well. Yes, that is a big one. Cost of treatment, really I think it is so important to understand your insurance benefits. The benefits that you have currently. You are right, your deductible, what is it? Your out of pocket, your co-pays, what your co-insurance? Understanding the general breakdown of your insurance is so super important I think because that is a guide for how the rest of the financial situation is going to go.

Kim: Yes, keep going.

Amanda: Then there is also... Go ahead.

Kim: Keep going.

Amanda: There is also the daily needs. I mean down to how am I going to work groceries or are there any assistance programs for groceries or utilities? Then there are a lot of times people just want to know how much are you charging my insurance? I think that seems like an odd concern but that actually is a real concern that I hear on a daily basis.

Kim: Amanda, can you talk a little bit about the costs that patients have as it relates to their insurance? Can you just take a minute or two to explain what is a deductible, what is a co-pay, what are those costing? Are they only cost that relate to the person's medication or do they relate to tests and office visits and things like that?

Amanda: That is a great question because it actually depends on the patient's insurance. Some employer coverage and direct us to break down different types of benefits that apply to different types of procedures. But generally speaking, your deductible apply to most everything pertaining to cancer, treatment wise. You would start with your deductible, that is an amount you have to meet before your insurance shares the cost with you. Your co-insurance is that cost your share of it, a typical policy will just say covers 80% of your charges after you meet your deductible.

Well, your response per 20% and then once you meet a maximum out of pocket, that means your insurance will then pick up and actually assume the rest of the cost. It is safe to say you typically on those policies have a maximum. Really in all honesty, when we are quoting cancer treatment, it generally is more important to know what your out of pocket responsibility is versus what your actual cost of treatment is. Then in addition to that, to add to the complexities, there is generally a co-pay assigned to your office visits. With oncology, there is a different co-pay for your specialists and a specialist is generally an oncologist that is considered a specialist.

That is another increase every time you come in and see the physician on top of getting your treatment.

It is very important I think to understand, like you said, the breakdown of what all the components are and that helps with the expectation of what the cost is going to be.

Kim: Amanda, how does a person, if they do not know that information, how do they find out that information about their plan about their policy?

Amanda: Fantastic question. Generally, there are hospitals and facilities, cancer centers, all can work very differently. I think that you will find that once you find out your diagnosis and you have your treatment options that someone may reach out to you and actually give you that information. If not, then I would encourage you to reach out to your registration staff at the Cancer Center to talk to them, to call in and maybe even request a financial counselor.

You can even talk to your HR person at work if you have employer covered benefits or simply an early off stashed away in a drawer somewhere that we generally get a book of information that talks about our insurance coverage when we sign up for insurance. It is one of those thing, dusted it off, pull it out, and try to go through that. Then I assume in most people, it is going to take a one on one. If you can get that person and in person conversation with someone at the center who can potentially help you with that then I think that is probably a great idea.

Kim: Great. We are talking today about what you need to know about the cost of your cancer care. We have Amanda Holt with us today. She is a financial navigator. She spends her days working with cancer patients, helping them navigate through the complexities of the cost of care and paying for care and all that comes along with that. We know in this day and age, it really is very... It is a maze so we certainly are appreciative that there are folks like Amanda who are out there. This is Frankly Speaking About Cancer. I am Kim Thiboldeaux. We are going to take a quick break. Do not go away, we have got a lot more to discuss with Amanda and we will be right back.

Your life, your health, your network. You were listening to VoiceAmerica Health and Wellness.

Effective cancer treatment requires more than just medication or surgery. For the country's twelve million cancer survivors and their loved ones, the social and emotional challenges of adapting to life with cancer are ongoing. How to handle coworker's questions, how to get comfortable with new physical realities. How to reassure worried family members or explain to friends your priorities have changed. The cancer support community is ready to help by providing free counseling, education, and hope for survivors and their caregivers. Whether online or at over one hundred locations around the world, the Cancer Support Community is ready to offer the support you need to live a better life with cancer. For more information on support groups, publications, nutrition, exercise programs and more, call 1-888-793-9355 or visit us online at www.CancerSupportCommunity.org. That is CancerSupportCommunity.org. The Cancer Support Community, a global network of education and hope.

Cancer Support Community is proud to be a partner of Magnolia meals at home. A new pilot program that aims to help patients by providing nourishing meals to households affected by breast cancer so loved ones can spend more quality time together. This program is currently available in and around two pilot cities and over Massachusetts and Woodcliff Lake, New Jersey. Participants will receive one delivery of meals every month for up to six months when enrolled in the program. Each delivery includes up to seven meals designed to help meet the nutritional needs of people living with breast cancer and ten meals for family members. This novel program is brought to you by the Eisai Women's Oncology Program Magnolia, Cancer Care, the Cancer Support Community and Meals on Wheels Association of America. To find out if you or loved ones are eligible, visit online at www.magnoliamealsathome.com or call 617-733-5848.

People living with breast cancer often find it difficult to ask for help and many of the people in their lives want to help but do not know how. During National Breast Cancer Awareness Month, Cancer Support Community is proud to support Meal Train sponsored by Magnolia which utilizes mealtrain.com, a free shared online calendar to streamline the process of giving and receiving meals for families coping with breast cancer. Help us reach our goal of one thousand new breast cancer specific meal trains this October. To learn more, visit mealtrain.com/MMT and enter the code Magnolia B or visit us at CancerSupport Community.org.

You are listening to VoiceAmerica Health and Wellness.

You are listening to Frankly Speaking About Cancer with the Cancer Support Community, an inspirational program offering the resources you need to live a better life with cancer.

Now, here is your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community.

Kim: Welcome back to Frankly Speaking About Cancer. I am your, Kim Thiboldeaux. Today's show is sponsored by Eisai. We are joined by Amanda Holt, a financial navigator and counselor with the Cancer Support Community and Maury Regional Medical Center. Amanda, let us start off this segment by talking about what happens after someone receives an initial cancer diagnosis.

One of the questions we hear most often when someone is newly diagnosed is what do I do, what is next? Obviously there is a lot that is going on with that patient as it relates to their treatment decision making getting the proper diagnosis, getting a second opinion, figuring out a treatment plan, but can you provide some answers to that question what is next as it pertains to finances and are there questions that patients should be asking really from the beginning?

Amanda: Sure. Yes, I think it starts with getting to know and understanding their current coverage and then empowering them, like you said, by providing options. A lot of times, the initial question is I think we have covered this, but cost. We can prepare for cost in many ways. We can we can talk about estimates, we can talk about the what if, but then really it is I get a lot of questions about my job. What am I going to do about my job? I think at that point is when we address options with their employer, I encourage patients to talk to their human resources person just to find out if you have a short term disability policy. Do you have a long term disability policy? Can you file for FMLA, what is COBRA?

Those are things that I would actually really encourage everyone to write down. Those are vital questions when it comes to care employer when you are going through treatment. Besides that though, I would suggest once you get face to face with someone that you can you can talk with, it is deciding what your current financial situation is also and a lot of times keep in mind it is not about what your financial situation has been as far as your income, it is more about what it is going to look like, what the future picture is going to look like? Instances such as if you were going to lose your insurance? That is a huge fear that I hear often.

I can provide you with potential options especially if I know what your income is going to look like in the next year or so. Thinking through this things and really empowering yourself by asking those questions and getting those answers addressing transportation, that is something that your cancer center will hopefully be able to help you with as well.

Kim: I know we are going to get into COBRA in a minute Amanda but can you tell our listeners what FMLA is?

Amanda: Yes, it is the Family Medical Leave Act is what that stands for and FMLA is basically what would secure your position at your employer. Each employer, they can have slightly different rules that surround that but typically it can only last for twelve months and it is something it would probably be actually my first step with my employer because you can be on FMLA in some cases and depending on your employer's requirements, you could come and go, back to work when you could or off when you could. It just depends on the situation and everybody's situation is different but definitely very important if you want to secure your position especially if this is going to be a short term recovery and treatment for you.

Kim: I think what you say is important, Amanda. Everybody's situation is different, right?

Amanda: Very.

Kim: We really need to roll down on your own personal situation, your coverage, are you working, are you retired, what is your insurance look like? You know there is so much that we need to take in on an individual basis which is one of the interesting things about healthcare today, right? I mean if you and I were to walk into Best Buy to buy a TV, we both get the same price for the TV. But if we walked into get cancer car, we both be charged something different for that cancer care, right?

Amanda: Absolutely. Side by side you could receive the same treatment and it could be totally different.

Kim: Totally different, right? I know, I know. I know, Amanda, so like everybody is not as so lucky to have an Amanda. Certainly there are patients at Cancer Support Community are but I just want our listeners to know that there are often times different folks in the hospital that are typically available to help patients learn more about managing the cost of their care but sometimes there is little awareness of who to talk to and who can help me. Can you tell us who potentially the people are, what their roles are in the hospital and who can I ask to help me. Again, we wanted them to know they should not be afraid to ask, right? This is something that everybody is dealing with and you should definitely there are some places where you can get answers right, Amanda?

Amanda: Absolutely. I strongly encourage to ask questions. Do not be afraid to ask questions. I love that you touched on that because behind the scenes we are all talking. Because no one situation is the same. As far as when I say we, the doctors and I, the finance staff and I, the registrations, the nurses, we all talk. The more questions you ask, believe me, behind the scenes we are talking trying to figure it out. Absolutely, every you could have a financial navigator, you can have a financial counselor, you could have a patient advocate.

Sometimes it might be a billing person assigned these tasks to help with these alternative funding and answer these types of questions. It could be a pre-certification person. I do encourage to ask questions. A lot of facilities also, you have a nurse navigator. That is a new and upcoming position and I think also your nurse navigator is also a good place to start. Again, I encourage you to talk to your physician. Your physician also knows what opportunities are there for you in your facility.

Kim: Amanda, aside from those resources inside of the hospital, aside from your insurance, if folks find themselves in a difficult situation, maybe they can afford their the co-pay for their different medications or they are struggling with some of their bills or things like that, are there resources outside of the hospital that folks can put their hands on to help them through that?

Amanda: Absolutely great question. Yes, there are. There are so many and if you get on the internet and you Google, you get overwhelmed. I do think once you kind of know what your treatment options are, maybe even specifically down to what your medications are, or at least your diagnosis, there are search engines. One in particular, needymeds.com. Needymeds are...

Kim: Say that again.

Amanda: Needymeds.com.

Kim: Great, great.

Amanda: Needymeds is a wonderful search engine site that you can search by your diagnosis, you can search by the medications you are saving whether they are oral or they are IV, it does not matter. It is a good place to start. They will pull up from that website the different foundations that you may qualify for. Aside from that, you can contact foundations directly, the Patient Advocate Foundation is huge. It is copays.org is their website and if they do not have an opportunity to assist you, they will actually refer you over to other foundations that may have open funding, may have a different opportunity for you.

It is a huge network and I encourage you just put your feelers out, reach out because you will never know. There is places like RXassist, if you have oral medications not just pertaining, not just specifically your chemo, but maybe other things that come along with your disease, that is another search engine that can help and assist and push you toward those direction.

Kim: I just want to tell our listeners, Amanda, that the Cancer Support Community, we have a great booklet about Frankly Speaking About Cancer. It is about coping with the cost of care and many of these resources that you are outlining on the show today are listed in that booklet. The co-pay, assistance, the foundations, the pharmaceutical support programs and other resources. Folks, go to CancerSupportCommunity.org. They can download that booklet for free, our coping with the cost of care booklet. I know we are putting a lot of alphabet soup out there to our listeners today and we want to make sure we are directing them to some places where they can put their hands on some of these much needed resources.

Amanda, how does a patient's diagnosis and treatment plan influence the cost of their care? For example you mentioned am I going to get an oral medication or am I going to get an IV medication? Is the cost going to be different for me whether I have an oral or an IV, is the cost different for me if I need chemotherapy versus radiation? How do patients really think about some of those issues or anticipate some of that?

Amanda: Absolutely. Yes and also cost of care is going to determine whether also if you have a short term treatment or a long term treatment. Obviously that will affect long term how much you end up out of your pocket but you are right. You treatment plan could include oral chemo and you might never have to really come in to the cancer center. But at that point, the oral medications are typically covered under your drug coverage whether that be for commercially insured patients or if you have a Medicare plan on Medicaid plan, it is covered under your drug card.

Those benefits are entirely different and especially if you are in the Medicare public population, those are we are getting to whole another ammo really. You have a very high out of pocket costs really kind of regardless what you do. Yes, that is different and then of course cost is different if you are getting IV chemotherapy or if you are getting radiation therapy in the center. Radiation actually, in my experience, can be even higher than chemotherapy. It is more cumbersome as well and cost because that is usually the type of treatment where you have to drive to the clinic every single day. Yes, that can vary greatly depending on what you get.

Kim: I think it is important for, again for our listeners to know, that every case is going to be different. We are trying to give some general answers, responses, and guidelines but that every person their situation is going to be different. Just quickly, we are just getting to a break here, just quickly Amanda how important is it for the patient to really speak up with the doctor, with the nurse, with the team, about their financial concerns?

Amanda: The more you stay in communication, constant communication with your physician, the more it helps the entire staff plan and navigate through your treatment. I do, that is very important. Our doctors here, they will call me if there is a financial issue. We walk through the clinical perspective and the financial perspective to help offer you the best type of care and we cannot do that without you are letting us now and staying in contact with us on what your situation is, I think that is very important.

Kim: I do, I agree, it is so critical. We want folks to know look this is our common challenges, you are not alone in facing these challenges, you are not alone in being concerned about the money. Speak up and let us help you get connected to the resources that are out there to navigate these difficult issues. This is Frankly Speaking About Cancer, I am Kim Thiboldeaux. We we are talking to Amanda Holt, a financial navigator, about really understanding the cost of your cancer care and we are talking about some tools and resources to navigate those costs. Do not go away, we have got a lot more to discuss and we will be right back.

Your life, your health, your network. You are listening to VoiceAmerica Health and Wellness.

Hi. I am Nick Nicolaides, President and CEO of Morphotek. We are delighted to be a sponsor of Cancer Support Communities Frankly Speaking About Cancer series. Morphotek and its parent company, Eisai, are committed to human healthcare and we recognize that patients and their families are the most important participants in the healthcare process. We salute our global advocacy partners who are devoted to improving the lives of people touched by cancer every day.

Cancer, it is a lonely word. Terms I do not understand, choices I never thought I would have to make. But there is hope and help. Support from cancer survivors, links to research and clinical trials, help with finances and access to care, all behind you and break away from cancer. Created by AMGEN to empower cancer patients. The Cancer Support Community is proud to be a partner of Breakaway from Cancer.

Cancer Support Community is proud to be a partner of Magnolia meals at home. A new pilot program that aims to help patients by providing nourishing meals to households affected by breast cancer so loved ones can spend more quality time together. This program is currently available in and around two pilot cities and over Massachusetts and Woodcliff Lake, New Jersey. Participants will receive one delivery of meals every month for up to six months when enrolled in the program. Each delivery includes up to seven meals designed to help meet the nutritional needs of people living with breast cancer and ten meals for family members. This novel program is brought to you by the Eisai Women's Oncology Program Magnolia, Cancer Care, the Cancer Support Community and Meals on Wheels Association of America. To find out if you or loved ones are eligible, visit online at www.magnoliamealsathome.com or call 617-733-5848.

Step into a healthier you, VoiceAmerica Health and Wellness.

You are listening to Frankly Speaking About Cancer with the cancer support community, an inspirational program offering the resources you need to live a better life with cancer. Now, here is your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community.

Kim: We are back with Frankly Speaking About Cancer. Today's show is sponsored by Eisai. We are joined by Amanda Holt, a financial navigator and counselor with the Cancer Support Community and with Maury Regional Medical Center. In this segment, Amanda, I really want to get into some of the nitty gritty of this topic and I know it is a little bit complicated but I think we have to really for our listeners talk about some of the different options that we are discussing here. Let us start by by talking about some of the different payment options available. We will start with with general options and then throw out a couple of different terms. I want you to define each of these for me and explain how they work and really when they are necessary options to employ. Let us start with COBRA. What is COBRA and how is that used?

Amanda: Essentially, Cobra is your employer, your insurance that you have to your employer. At the point of terminations or separation from your employer, they offer to let you keep your plan. COBRA is simply the term that means that you will pay your full premium, and that your employer is no longer contributing to your premium. Generally, that can double, triple, even quadruple, in some cases what you pay to keep your insurance.

The reason we stress on this is not the importance of just the lapse in coverage, if you lose your insurance you are not able to afford COBRA but if you move to a different insurance at that point in time and let us say you are halfway through the year, then you have already paid or the doctor went out of pocket with your COBRA insurance or your employer insurance and then you are going to start over with a new insurance and you are going to be even more out of your pocket. In those cases, that is why we stress it is so important if you can keep your COBRA but essentially that is what it is. It is your full premium to keep your insurance from your employer.

Kim: The benefit is your employer is if they have been providing insurance for you, they are required by law to offer that to you but you have to pay the full amount yourself. The up side is you can continue to have access to insurance and continue with coverage through your same insurer because you have already paid those co-pays and things and deductibles and things like that. But the downside is it is going to be a lot of money. Is that what you are saying?

Amanda: Absolutely. Yes.

Kim: Yes, yes, yes.

Amanda: Put it down on paper and way your odds. The COBRA, if you look at your premiums, even though your premiums go up you are saving yourself an additional duck going out of pocket. These are kind of things that we try to navigate through. Let us say you drop your COBRA insurance and let us say you pick up on marketplace plan at that point, you are going to start over with the deductible, you are going to have a premium for that, once you add all that up you could potentially be paying the same amount you would be if you cut your COBRA premium.

Kim: Basically you got...You got to ask these questions before you make any decisions to what you are saying.

Amanda: Absolutely.

Kim: When you say marketplace, that is the Affordable Care Act, that is what we sometimes refer to as Obamacare when you say marketplace coverage, correct?

Amanda: That is correct, yes.

Kim: Okay, great. Just so our listeners have our terms right because it is a bit of an alphabet soup here. That is the ACA, The Affordable Care Act. Okay, covered COBRA, tell us a little bit about short term disability. What is it? How do I access it?

Amanda: Short term disability is typically... It is another one of the things that it is the benefit from your employer. You would access it by probably talking to your benefits person in your HR department, that would be the first point of contact I would suggest but it is going to be a short term, just as it says. It is going to be a few weeks. Typically, you will be paid from your employer. It is extended vacation basically and typically it is at a lower percentage of your pay. Example, you would only get 60% of your pay through the short weeks. Then after that, potentially your employer can also offer a long term disability.

It works generally the same way. You get a percentage of your pay, it is just an extended extended leave and also at that point, depending on your employer, is when your insurance may turn over to COBRA or you may get to keep it. Those things are important to consider for that too but it is extended vacation time. It can be in most employers will allow you to do this on top of taking your FMLA, see your positions protected, you have a short term and it would allow you just some time even to kind of figure out what the plan is at that point.

Kim: Some opportunities to kind of layer some of these things on top of each other to get you some extended, at least partial coverage. Then what about what is Social Security Disability Insurance? Obviously, when we think of Social Security right? That is the money that we have been putting away through our paycheck that when we are sixty two or sixty five or sixty seven, we can start collecting Social Security. But what is Social Security Disability Insurance, it is definitely one of those things that I think there is lack of understanding with disability.

It can be temporary. Social Security Disability is something that you can apply for even if you are receiving short term or long term disability from your employer. They are two different things. Social Security is essentially for folks who are going to be disabled based on their diagnosis? Based on what is going on for at least over a year. It is something that you apply for straight with the Social Security Office on your own or you can actually hire an attorney to assist you with that process.

Here at our facility, we actually have an employee here who is responsible for coordinating those efforts with the patient and helping the patient gather all of your medical records. It is a very extensive process and there can be very long waiting time. I actually... Do you really want to stress that there is an option to have an attorney to help you to that process, to help you with all of the lingo and the letter that you received from the Social Security Administrations but also want to tell you that there is two different types of security disability. Both types do actually, you will get income with both There is SSI an SSDI. SSDI, they are basically determined based on your assets.

If you have liquid assets such as like a 401K or IRA, things like that. Social Security Disability, SSDI, is probably going to be the option for you and what that means is it will be approved based on the date you are doing disabled, you will receive encounters of security disability and you will also receive Medicare, two years and five months, down the road from your approval. There is also, I know I am throwing a lot of terms out here, it is a lot. I think that is part of stressing the complexity of all this too. But there is SSI, those are other option for Social Security Disability and that option, if you have less asset, that option will come with income and immediate insurance in most cases. That is why, in that sense, that is one of those layers like you said earlier that we can add in from the very beginning as we are working on everything else knowing that it is going to take some time.

Do not be discouraged, I would like to say, in applying for Social Security Disability even if you are receiving other pay, other income from other sources. Because if you are not planning on going back to work in more than a year or your position, let you know that you may not ever, then that is definitely something I would encourage you to pursue.

Kim: Amanda, I would be missed if I did not bring up... I mean obviously there is a lot of debate in this current political climate. Can you just tell us a little bit about how the Affordable Care Act has affected the cancer space, the cancer conversation, the cost of cancer care? I know that that one of the things that a lot of cancer patients experience was that they could not get coverage because they had cancer which often referred to as the pre-existing condition. I know that the Affordable Care Act eliminated the ability to discriminate against those folks with a pre-existing condition. Other ramifications of the Affordable Care Act and potentially if it is repealed or replaced?

Amanda: Bottom line is the Affordable Care Act did provide another option for our patients. It has been a great option because it actually kept some family from reaching a catastrophic level of debt. I cannot really speak to repealing the replace because we do not really have a plan yet.

Kim: Sure, sure, sure. But I know there is a lot of will to keeping that pre-existing condition. Yes, yes. I think that says...

Amanda: There is. The pre-existing condition for the cancer community is definitely a huge focus because obviously that is going to affect their ability to get insurance and it is not just people who are without a job and self-pay. It is for small employers as well who do not have the ability to offer their employees insurance.

Kim: Amanda, we know that Medicare is essentially coverage for those who are sixty five and older. Again, we have sort of paid into that system over the course of our working lives. Just a minute, we have got another minute or so until our next break here but can you also just explain for a minute or two about Medicaid? Again, Medicare for seniors sixty five and over, Medicaid is for those who are lower income. Can you tell us about that?

Amanda: Sure. We have 19 states at this point in time who has not expanded their Medicaid program and basically what that means is Medicaid is not in every state. It does not include people who are just low income. You have to meet a specific category in order to get into the Medicaid program. Medicare is for sixty five and older but also for those who are preferred just for disability. In some cases... I would like to give a great example of how cancer and the different categories of Medicaid can work.

Kim: Yes.

Amanda: It is a very unique situation and it happens more than you think. I have a patient who I had sat down with. He had no insurance, he has got Leukemia and his family is of course dealing with the devastation of diagnosis and what am I going to do about treatment and how we are going to afford it? There were some pharmaceutical company assistance available for him and through conversations and filling out the application I found out that he has nine children at home. That qualified him for Medicaid, that is one of those categories. That is another also example of communicating with your staff and know anything will be good. It may not be relative to cancer but on the spot I was able to help him with Medicaid and get a treatment covered him.

Kim: You got to talk about what is going on at home, you got to talk about your family, you got talk about your employment situation, you got to talk about all that you got to talk about. What you have in savings, you have to talk about all these things. Do not be shy about doing that because it is really going to matter and the more we know the more we can help you get the best care that is out there and get you connected to those resources. This is Frankly Speaking About Cancer. We have got more to discuss with Amanda after the break. Amanda Holt, a financial counselor with us today. Do not go away, we will be right back.

Steps to a healthier you, VoiceAmerica Health and Wellness.

I am Bill Schaefer and this is today's cancer in the news. 'Regular exercise can reduce a woman's risk of cancer but the benefits may be diminished if she gets too little sleep,' researchers said on Monday. The study involving 5968 women confirmed previous findings that people who do regular physical activity are less likely to develop cancer. But when the researchers looked at the women ages eighteen to sixty five who were in the upper half in terms of the amount of physical exercise they got per week, they found that sleep appeared to play an important role in cancer risk. Researchers discovered that those who slept less than seven hours nightly had a 47% higher risk of cancer than those who got more sleep among the physically active women.

While additional studies need to be done to clarify how getting too little sleep may make one more susceptible to cancer, there is no question that getting adequate sleep has been long associated with health? The US Centers for Disease Control and Prevention calls sleep loss an unrecognized public health problem saying Americans are getting less and less slumber. The CDC said the percentage of adults reporting sleeping six hours or fewer a night increased from 1985 to 2006. Sleep experts say chronic sleep loss is associated with obesity, diabetes, high blood pressure, stroke, cardiovascular disease, depression, cigarette smoking and excessive drinking. In addition, research have shown that people who get regular exercise have a reduced risk of breast, colon, and other types of cancer. Experts think the effects of exercise on the body's hormone levels, immune function, and body weight may play an important role. In other news, scientists say drugs used to control diabetes may lower the risk of prostate cancer.

Recent studies have reported a decreased prostate cancer risk for diabetic men, although it is currently unclear whether use of any diabetic medication affects the association between diabetes and prostate cancer. Researchers studied a group of men that were diagnosed with prostate cancer and a group of controlled men without prostate cancer. The total number of subjects comprised nearly fifty thousand individuals or all diabetes drugs were used by 7.5% of the men with prostate cancer and by 8.4% of controls. The prevalence of insulin use was 2.5% and 3% in the controls. Men who had a history of taking any diabetes medication had a 16% lower risk of prostate cancer.

The decreased risk was comparable for all anti-diabetic drugs including metaform and insulin. The investigators found that the overall risk, as well as the risk of advanced prostate cancer, decreased with the amount and duration of medication use. While the potential mechanism behind decreased prostate cancer risk for diabetic man is currently unclear, it is very likely that the changes and dodging this hormone metabolism occurring in diabetes have an important role. I am Bill Sheaffer and that is today's cancer in the news.

Cancer Support Community is proud to be a partner of Magnolia meals at home. A new pilot program that aims to help patients by providing nourishing meals to households affected by breast cancer so loved ones can spend more quality time together. This program is currently available in and around two pilot cities and over Massachusetts and Woodcliff Lake, New Jersey. Participants will receive one delivery of meals every month for up to six months when enrolled in the program. Each delivery includes up to seven meals designed to help meet the nutritional needs of people living with breast cancer and ten meals for family members. This novel program is brought to you by the Eisai Women's Oncology Program Magnolia, Cancer Care, the Cancer Support Community and Meals on Wheels Association of America. To find out if you or loved ones are eligible, visit online at www.magnoliamealsathome.com or call 617-733-5848.

Steps to a healthier you, VoiceAmerica Health and Wellness.

You are listening to Frankly Speaking About Cancer with the Cancer Support Community, an inspirational program offering the resources you need to live a better life with cancer.

Now, here is your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community.

Kim: We are back with Frankly Speaking About Cancer. Today's show is sponsored by Eisai. We are closing out the show with Amanda Holt, the financial navigator and counselor with Maury Regional Medical Center and with the Cancer Support Community. Amanda, we are getting to the end of the show. Again, I feel like we could talk for three hours and not even scratch the surface on these complex topics. What advice do you have for people who feel like they have just exhausted all of their resources? They do not know what to do, they do not know where to turn, it can be so overwhelming. People feel like, tell me, they feel like they are just drowning with some of these issues and some of the burden of the finances of cancer care. What should they do?

Amanda: First of all, Kim, I think it is an opportunity to reflect. Stay positive and again stay in contact with your point people at your facility but as complex as the situation is, I think relying in the focus and keep things as simple as possible is important. Trying previous options again is never a bad thing to do even if you are reapplying for the same thing. I think that there are probably questions that we are going to ask that you do not realize about your situation has actually changed. There is nothing wrong with starting over back to the basics and trying again but stay positive, get plugged in. Some of your groups, there are support groups that are offered at your cancer facility, you will never know what you will find out on a peer to peer level with networking, with people in your support group.

There is a lot of local assistance out there that is not heavily advertised, there is a lot of community assistance. On top of that, I think that there are several times that I have simply just sat down with a patient who seems so overwhelmed and I think it is really because they keep getting those bills in the mailbox and it can come down to something as simple as organization. I think having, if you are a spreadsheet person, if you want to write it down, if you want to put it in a notebook or a folder, I think keeping that bills organized together and if you do not understand, make sure you ask questions, but I think that is a huge stressor for a lot of patients because there is so many different places that these bills are coming from. It could be a lab company, your doctor, the facility itself. Stay organized as much as possible.

Kim: Yes, yes. Absolutely. Amanda, I love hearing some of the stories. Give us another success story. Tell us about a patient there that you may have helped and again by them sharing some information or revealing some of the details of their situation that you were able to connect them with some resources and get them some help.

Amanda: Sure. This morning actually I walked in to one of those success stories. A patient came to me in December of 2014. shortly after I took this position, and she had ovarian cancer. She worked at a part time job, no insurance. Her husband worked but his employer did not offer spouse coverage under the policy. She is completely uninsured at this point. We started actually with hospital financial aid. I helped her with our financial aid that we offer our charity program and then very very shortly after she started, there was the ACA marketplace open enrollment. We were able to enroll her into an insurance and simultaneously during all of this, we helped her file for Social Security Disability.

Well, now here we are two years down the road and this morning when I said hello to her, she said I just want you to know I am so excited. It has been two years, I have kept my marketplace plan, her plan cost $20 dollars a month to have to cover her cancer treatment. She was approved for Social Security Disability but she got her income during that time as well so it kept them afloat. Now she's at the point of her Medicare. Now that she is on disability, her Medicare is kicking in. We were able to talk over the last couple years about what her options were when she got her Medicare. She now has Medicare and with that plan, she has 100% insurance coverage. She informed me of that when I walked in the morning and I was so excited to hear that. But that is a great example ever, that is a long time. We worked together for a long time and it was a very good success story on her part.

Kim: Again, just reminding folks, you have got to just open your mouth. You got to tell people what is going on, you have got to talk to your medical team. They at least will have some sense of some of the resources that are out there to help you. Amanda, earlier in the show, you threw out a couple websites. Can you can you talk about those again as we get to the end of the show. A couple of those websites and places where folks can go to look for some of that support and information.

Amanda: Absolutely. The patient advocate foundation, it is copays.org and they are, as it says there, they are an advocacy foundation. They will help you in some instances with co-pay and help you with the cost of your treatment. If they cannot help you, they are really great about forwarding your information on or forwarding you onto another local organization or national organization that may be able to help you. There is the PAN Foundation, Patient Access Network Foundation. They can be found online also, the panfoundation.org. They have an array of different diagnosis, specific medications that they help cover. They also help with transportation. There is also a cancercare.org. They help with transportation and they will also triage you to other different organizations if it is needed.

The HealthWell Foundation, Leukemia Lymphoma Society, needymeds, PPARX which is a prescriptionforpartnershipassistance.org. There is RXassist.org. I think if you start in one of those places again, I want to stress that needymeds is a great search engine. Starting with those places, it is kind of going to lead you down the path to your next steps and on to the next person. Again, I have kind of mentioned earlier, the Cancer Support Community. Our website offers information disease specific, just general information about your disease. I think it is really great actually on a regular basis. Then they have great Frankly Speaking About Cancer tools, resources to use to write down questions for the physician because if you do not write them down, if you are anything like me, I know you will forget. Those are just to name a few and I know that is a lot but there actually is a lot of assistance out there.

Kim: Yes. We have got about a minute left, Amanda. Any last takeaways or tips for our listeners today?

Amanda: I want to re-stress getting plugged in. I know that we said that over and over but I really do not feel like I can stress it enough and support groups. Our facility I know offer support groups and I know that there are various facilities that do. Any support groups that are associated with your facility, scale the club, if you have one in your area. I really stress being plugged in and also please share your success stories and even the unforgettable stories because that is how we all learn how to help you. I learned from...

Kim: Yes, go ahead.

Amanda: That is how I learn every day. I learn from my patients and they all teach me something new every day. Please share, we want to hear.

Kim: That is great advice, Amanda. Thank you so much for being on the show today. It is really an important issue. It can be so daunting, so complex, such a maze, and you really have shed some light on the resources available to patients and families and to all of our listeners I want to thank you for joining us today for Frankly Speaking About Cancer. I am Kim Thiboldeaux from the Cancer Support Community. At the Cancer Support Community, we do provide a multitude of end person online and over the phone.

Support if you or someone you know is faced with a cancer diagnosis. You do not have to face cancer alone. Visit us on our website at CancerSupportCommunity.org. As Amanda said, we have got a ton of great resources online, everything is free. You can also call our helpline and talk to folks like Amanda, talk to social workers, other counselors who have great expertise. Call us at 888-793-9355. If you are grabbing a pen, I will say it again, 888-793-9355. Just speak with a counselor. Again, we would like to invite you to join our Advocacy Network at cscadvocate.org and to join our cancer experience registry and share your voice with us at cancerexperienceregistry.org. This is Frankly Speaking About Cancer. Until next time, be well, do well, live well.

Thank you for joining us for Frankly Speaking About Cancer with your Kim Thiboldeaux. We are here for you every Tuesday afternoon at 1PM Pacific Time and 4PM Eastern Time on the VoiceAmerica Health and Wellness Network. In the meantime, stay connected online at CancerSupportCommunity.org. That is CancerSupportCommunity.org.