Transcript: The Financial Impact of a Cancer Diagnosis
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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's your host: Kim Thiboldeaux.
Kim: Welcome to Frankly Speaking About Cancer, an internet radio show. It focuses on informing and inspiring people to live well with cancer. I'm Kim Thiboldeaux; CEO of the Cancer Support Community. The wellness community and Gilda’s Club have united to become the Cancer Support Community; one of the largest providers of cancer support in the United States and around the world. Our services are offered to more than 100 locations worldwide and online at www.cancersupportcommunity.org.
When a person is diagnosed with a devastating disease like cancer, their first thoughts almost always focus on saving their life or extending it for as long as possible. It doesn't take long though for the realities of paying for treatment, care, and other related costs to come into play. The cancer diagnosis can have massive financial consequences as reported on NPR and other news outlets. cancer survivors are nearly three times more likely to file for bankruptcy than people who have not been diagnosed with cancer. I've said it before, I'll say it again, and I and everyone at the Cancer Support Community believe that people are empowered by knowledge. We need to have more conversations about managing the cost of care and connecting patients with resources to help them, so that patients are making informed decisions.
That is exactly what we're going to do today. I am thrilled to have with us today some of the leadership from Good Days; an organization that specializes in providing financial help to seriously ill people. With us are Clorinda Walley, the Executive Director, and Randie Odebralski, the Chief Operating Officer, but first we're going to speak to cancer survivor and lifelong humanitarian Len Rodgers. Len’s humanitarian work has taken him across the Middle East and Central Asia and Len is no stranger to facing crises. He and his family were evacuated from Lebanon during the Six Day War in 1967, and that was not his last experience with war in the Middle East. In 2003, Len faced a different kind of crisis when he was diagnosed with multiple myeloma. Thank you for being with us today, Len.
Len: Great to be with you. I'm really looking forward to, and excited to, talk to you.
Kim: Excellent. Before we get started, Len, tell us how you're doing today.
Len: Well, I turned 80 last November. I go to the YMCAS for their 50 plus exercise program every Monday, Wednesday and Friday. I still ride my bike and I'm not retired. I work eight to ten hours each day. Currently, among other things, I’m helping provide hundreds of strollers for Syrian and Iraqi children refugees who have serious mobility problems; so strollers. I also help the mothers to get out and shop and do something outside of their temporary refugee shelter out in Turkey.
I always tell people who ask that it's by the grace of God, Mayo Clinic, and an [Inaudible] [03:17] called Good Days that I’m alive; and I'm delighted to share with you the tremendous success that I've had with my cancer.
Kim: Thank you, Len. So, Len, why don't you tell us a little bit about your life right before your diagnosis and what led you to seek some medical attention for what some of your symptoms were?
Len: I was in Bishkek in Kyrgyzstan where we had established a wheelchair factory in a centre for rehabilitation for children with mobility challenges. Kyrgyzstan was formally a part of the USSR and when the country became independent from Russia during the Reagan administration, we established the first factory for wheelchairs in all sides of the Stans, you know, Stans like Tajikistan, Kazakhstan, Uzbekistan, and ours was in Kyrgyzstan. Lots of people used to ask me where Kyrgyzstan is, and I enjoyed saying it's not at the end of the world, but you can see it from there.
While I was there observing the work in the factories in the rehab centre, I became sick, which was unusual for me, and simply could not find out why I was lethargic. I could hardly get out of bed. I finally returned to Arizona via Istanbul and London. Before I could go to the doctor, I was at home and reached up to get a box of cereal off the top shelf and broke my collarbone. It just snapped. I went to the ER. They did an X-ray and told me what I already knew and could feel it; that the collarbone was broken. I could feel the end that was sticking up. I still continued to feel bad and they finally set the bone. I had a bone biopsy, the sternum, and the doctor told me that the results of my broken bone in my shoulder was because I had something I had never heard of before, called multiple myeloma, all this time. About three months. Then I discovered that they wanted me to have radiation for multiple myeloma. I had already heard that only one percent of all cancer patients in America at that time had multiple myeloma, and therefore a little research money available. I went home to my wife, Pauline, with the news that the doctor gave me that I had two months to two years to live.
Kim: What year was that in?
Len: I'm sorry?
Kim: What year was that?
Len: That was 2003. It was about 15 years ago.
Kim: Wow. I want to get a little bit to some of the cost and financial issues. So, did your insurance cover the cost of your treatment? What were some of the financial ramifications of this diagnosis for you and your family?
Len: I was really fortunate in that. We did have Medicare and we also had a supplementary insurance, and all of that only happened about three months before I was diagnosed. So, that was very timely. I had a friend at church who suggested I go to Mayo Clinic. She had the same disease and was very insistent that I go there. I went in and the original diagnosis was confirmed. Dr Rieder, at Mayo – a leading world expert on multiple myeloma – asked if I would consider entering a clinical trial; that means an experimental trial and drugs that are experimental, and they don't charge you for them. This particular drug had not been approved by the Food and Drug Administration. I immediately said yes and went on to say that what is there to lose.
I'm a person with faith. I believe in the grace of God and so, it was a win-win. The experiment worked, I lived, and if not, I'd go where my faith in God would take over. I also had to think of my wife, my three grown children, six grandkids, and we all got together and took some time and I broke the news.
Kim: I know some of the significant costs were covered. Some of it through Medicare, some of it through the clinical trials, but then eventually, that was not the case and you turned to Good Days for help. Can you just take a minute to tell us about that?
Len: Yes. In fact, Dr Rieder’s, at Mayo Clinic, head nurse asked me – when I started having to pay $13,000 a month for an improved drug, the out of pocket was astronomical – have you tried Chronic Disease Fund; which is now called Good Days? I said no, I have never heard of it. She gave me the address and I wrote and they sent back a form that I filled out. I send them my 1040 tax form and they saw my financial situation, and I was surprised how quickly they responded. Actually, it was a lifesaver. There's no other word for it. It was an absolute life saver.
Kim: So, we have a couple more minutes together and, for those who are listening in today, I'd love to hear what advice you have for someone who maybe doesn't want to reach out for help. Maybe they're hesitant to discuss their financial situation with the medical team or others and reluctant to reach out. What advice would you have for those folks today, Len?
Len: Well, people want to help. As a man, I'm reluctant to ask for help like a lot of men. I like to be self-reliant, but when you're faced with insurmountable problems, you realize that you better be realistic and ask for help. I did that with help from my wife, Pauline, and it was amazing how quickly – we did the math and we found out that if we continued the way we were without health – we'd be on the street in five years. So, that kind of motivates you toward doing something.
Kim: Yeah and tell us about the kind of help you received from Good Days.
Len: Well, I mentioned that I had Medicare and supplementary insurance, but the out of pocket was very high: this $13,000 for 21 capsules. Good Days told me that I could also apply for transportation to and from Mayo Clinic; I live 22 miles one way. So, they were amazing and they helped me with my transportation as well as the out of pocket. I'm able to work and do what I enjoy doing more than anything; helping other people, and I've told so many people about Good Days and about my treatment and, actually, it's become a kind of a side occupation, and a joy. Even Good Days has encouraged me to tell others and I've done that with a lot of enthusiasm.
Kim: Len, you're really a humanitarian. You're someone who has spent your whole life giving to others and still doing that today after all of these years, and it's really just incredible to hear your story. You know, as I said earlier, you're no stranger to facing a whole host of crises, through your international work and throughout many, many decades, and it's just great to hear that this was an organization that was able to help you; somebody who's been giving your whole life. Len, I really appreciate you taking some time with us today. I appreciate you coming onto the show. I appreciate you raising awareness of the good work that Good Days is doing. We're going to take a quick break here right now, and then we're going to dive in to learn a little bit more about Good Days. Thank you Len. We hope you have a great day. We wish you lots more health and wellness and we really cheer you on as you’re going out to help others.
This is Frankly Speaking About Cancer. I'm Kim Thiboldeaux. We're going to take a quick break and we'll be right back.
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Effective cancer treatment requires more than just medication or surgery. For the country’s 12 million cancer survivors and their loved ones, the social and emotional challenges of adapting to life with cancer are ongoing; how to handle co-workers’ 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 counselling, education, and hope for survivors and their caregivers, whether online or at over 100 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 1-855-771-8229 or visit us online at www.cancersupportcommunity.org. That's cancersupportcommunity.org. The Cancer Support Community; a global network of education and hope.
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Real life solutions; Voice America: Health and Wellness. You're 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's your host: Kim Thiboldeaux; President and CEO of the Cancer Support Community.
Kim: Welcome back to Frankly Speaking About Cancer. Today's episode is brought to you in part by AstraZeneca and Lilly Oncology. I’m Kim Thiboldeaux. We’re here today talking about the financial impact of the cancer diagnosis. We're now joined by Clorinda Walley, the Executive Director, and Randie Odebralski, the Chief Operating Officer of Good Days; an organization that provides financial assistance to seriously ill people.
Clorinda Walley is the Executive Director of Good Days. She has led the charity for more than 20 years of experience in the healthcare industry and more than eight years in strategic philanthropy. She oversees the operation staff and programs for Good Days, as well as the expansion and execution of its mission. Clorinda is an expert in access to care issues that patients face every day. Welcome, Clorinda.
Clorinda: Good to be here. Thank you so much for having me.
Kim: Randy Odebralski has more than 19 years of leadership experience working with Walgreens throughout the United States, including in various pharmacy settings such as mail service, home care, home infusion, hospice, long-term care, and specialty care. He focuses on providing the leadership, management, and vision necessary to ensure Good Days has the proper controls, procedures, and systems in place to deliver solutions for patients centred on advocacy, care and service. Glad to have you with us, Randie.
Randie: Thank you. Glad to be here and appreciate the opportunity and time.
Kim: Absolutely. Dr. Yousuf Zafar of Duke University School of Medicine coined the term financial toxicity to describe the devastating impact of dealing with the cost related to a cancer diagnosis. Clorinda, explain to listeners what Dr. Zafar meant by financial toxicity, and do you think it's an accurate term?
Clorinda: Absolutely. First, I absolutely believe it's an accurate term and simply stated, it's an inability to afford your treatment along with the everyday costs of living. I've seen for the last 20 years that the costs are exceeding to get larger and larger with patients having the inability to afford therapy treatments. So, financial toxicity or distress is a very real problem for cancer patients. Cancer is among the costliest medical conditions and survival depends on being able to access and afford treatment. What's really unfortunate is that one in eight people are said to turn down cancer treatment because of the cost. Looking at the Journal of Clinical Oncology, they reported that cancer patients who declare bankruptcy have less likelihood of survival than those who do not, and we all know patients with cancer need every option for survival. Their treatments come with a lengthy list of unfortunate side effects, and bankruptcy should not be one of them.
Kim: Clorinda, we think nausea and vomiting and hair loss, and we think about toxicities from cancer, right? We think about those kinds of toxicity. So, financial toxicity is another side effect of getting a cancer diagnosis, isn't it?
Clorinda: It is, and more and more so alongside with financial toxicity, we're seeing the need for psychosocial support – you know, the two things that people don't like to talk about; their mental health and well-being, and their financial means.
Kim: Most definitely. Very private topics that really do come to the fore in a light of a cancer diagnosis. Randie, we know that the cost of cancer treatment is high and we know that more and more patients have deductibles; out of pocket costs, transportation costs, childcare costs, lost wages; when dealing with a cancer diagnosis. Do we have an estimate of the cost? Do we have an estimate of the kind of debt that people are incurring? What kind of studies or data do we have on this?
Randie: Yes, Kim, there are definitely some ranges and estimates provided, but I think the key piece to understand is that the financial impact depends on both diagnosis and treatment for each individual.
There is some commonality, obviously, as the high cost that continues to grow and impact a person's life and everything around them, but if we want to look at some statistics – I like to look at the Journal of Clinical Oncology – newly approved cancer drugs cost on average about $10,000 per month, but some of these therapies are topping greater than $30,000, so it's a significant amount of dollars. Patients often pay, approximately, a third quarter of the cost of that each year, and even counting monthly premium expenses, it gets pretty expensive for them and that leads to debt that can be very staggering and, at times, unrecoverable. So, the true impact of the cost of these medications is, obviously, the impact on people and everything around them, and that contributes to the financial toxicity that Clorinda just spoke about.
Kim: So, Randie, I know that we're seeing a lot of good news in cancer in terms of new treatments coming out, right? This whole new field of immunotherapy, immune-oncology; lots of great advances in treating cancer and more targeted therapies, personalized therapies. Is there a significant difference in the cost for traditional treatments like chemotherapy or radiation versus some of these new more cutting-edge treatments like immunotherapy?
Randie: I think regardless of the treatment cost, it's become a standard issue across the healthcare spectrum and a major topic of conversation across our country on a daily basis. You know, immunotherapy, specifically, can be particularly costly. However, when it comes to an unexpected diagnosis, there's really no way in advance to know which category of treatment the patient will fall into. So, as you kind of deal with that, preparing financially for an event is no small challenge. Different treatments work for different people and their specific situation, and there's a lot of factors that play into that. We can look at diagnosis, we can look at treatment history, their overall health, including other conditions that they may have. You see a lot of patients who have comorbidities, and all those kinds play a factor in the treatment they need, and at that point is cost a factor when you have got to look at it being the key to them surviving; we're extending their life to enjoy what we all should enjoy.
Kim: Clorinda, I know our research at the Cancer Support Community on access to care and cost show that many families are making really significant trade-offs in an attempt to manage their healthcare costs in the cost of care. Can you tell us what patients are telling you about some of the difficult choices that they're making when trying to figure out what they can afford, what they can’t afford, and how they go forward with their cancer care plan?
Clorinda: Absolutely. Len stated it very nicely when he sat down and looked at his medical costs and knew that he wouldn't survive after five years. Today the reality is people are having to choose between feeding my family, having a car, having the ability to afford rent, and, the most concerning piece for me in all of this is, also choosing not to take the medication. So, about the one thing that provides hope to keep them stable in their life, they're making decisions like, maybe if I take the medication every other day, maybe if I half my pills. They have no desire to put their family in any type of stress, so, many of them take the burden upon themselves and would do anything to try to get assistance.
You know, I've had people on the telephone who've lost all hope. One of the most unfortunate calls I've ever had, and it was very sad and disheartening for me, was a gentleman. He was like, ‘I can't go on. I can't afford the treatment. I can't afford to put my family in this position. I feel as if my only choice is to burn down my house’. I mean this is how real it is, and it's scary. They're making everyday choices on how they want to survive, and it's not a survival on steak and champagne, you know, you're looking at skipping meals, skipping medication.
Kim: Right. You know, Randie, in the last couple of years we've been seeing this term ‘under-insured’ used a lot in the media, especially with the affordable care act and things like that. What does that term mean and how do you know if you fall into that under-insured group?
Randie: Yes, Kim. The term has definitely become more commonplace and that's very unfortunate. I think there are different ways to define, again, based on individual situations like I spoke about earlier, but what we do know is that it effects way too many people. You know, I looked back to the definition, that I saw from the Commonwealth Fund back in 2015, that defines a person who is under-insured as having an annual out of pocket medical expense; and that's excluding premiums, that adds up to 10 percent or more of the household income. I think when you look at that, the cost of medications; which we spoke about earlier; tend to even exceed that. So, you know, it's very tough for these individuals to deal with that piece.
And to your other side of that, the reality is you really don't know what the financial impact is going to be, whether you're insured or not or under-insured. Realistically, we hope that we honestly don't have to make that decision, but it's definitely a reality that we all have to face just because of the growing nature of the situation.
Kim: Yeah. Clorinda, you've been quoted as saying, ‘I've yet to hear a financial advisor ask a client if they'd like to plan their retirement with or without cancer’. We've got just a minute or two until our break here, but do you think cancer, or frankly any major disease in general for that matter, should be part of all financial planning conversations?
Clorinda: Oh, absolutely. Again, I'd like to go back to like hard numbers. According to the American Cancer Society, in 2018 there will be an estimated 1,735,000 new cancer cases, resulting in 609,000 deaths; that's 4,750 new cases a day with 1,670 deaths. So, I think it's very important, but the hardest part about it is the problem that comes; like how much money is enough and, more importantly, how can it be achieved when millions of Americans preretirement are struggling to afford their basic necessities of life.
So, you know, it's a difficult situation, but I certainly believe that there's a 40% chance, again according to the National Cancer Institute, that we will get cancer in our lifetime. Forty percent and that number increases year over year. So, certainly, I don't think that we can depend on the current healthcare system to be our answer. You know, its unstable today, it may likely be unstable in the future, and so, planning for it is essential. I think that we all have to keep it as a part of our daily lives, whether you know you're making $20,000 a year or $100,000 a year. The fact is that we can't depend upon our healthcare to cover all of our costs.
Kim: This is Frankly Speaking About Cancer. I’m Kim Thiboldeaux. We are talking with Clorinda Walley and Randie Odebralski from Good Days. We're talking about the financial burden of a cancer diagnosis, the burden that that brings to families, and how folks can plan, what some of the resources are out there for folks who are facing a cancer diagnosis and dealing with some of these financial challenges. We have a lot more to talk about with Randie and Clorinda. We're going to take a quick break and we will be right back.
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You're 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's your host: Kim Thiboldeaux; President and CEO of the Cancer Support Community.
Kim: Welcome back to Frankly Speaking About Cancer. Today's episode is brought to you, in part, by Inside Corporation [Inaudible] [30:47] and Taiho Onology. I'm your host, Kim Thiboldeaux. We're fortunate today to have some great guests who are helping us really understand the financial impact of a cancer diagnosis. With us today to help make sense of this difficult topic are Clorinda Walley and Randie Odebralski from Good Days; which is an organization that provides financial help to seriously ill people. Clorinda is the Executive Director and Randie is the Chief Operating Officer. Clorinda and Randie, you both worked in the for-profit world before joining Good Days. Full disclosure: in a previous life I worked for the Swiss pharmaceutical company Roche, but, I was surprised to see that you both worked in specialty pharmacy. Randie, can you explain for our listeners who may not know what that means, what specialty pharmacy is, and maybe tell us a little bit about why you moved over to the non-profit world after so many successful years with Walgreens?
Randie: Definitely, Kim. I will try and keep this definition short because I could talk about it for hours. Most people think of the traditional pharmacy model with the pharmacy on the corner where you go and get your antibiotics when you're sick or your maintenance medications, such as blood pressure pills or cholesterol pills, when you need them but, specialty pharmacy has really grown in the area of pharmacy and remains the highest growing area of pharmacy to this day, especially in the area of oncolytic. Specialty pharmacies are special in the sense that they have to coordinate all aspects of patient care, not only prior to, but once a patient is on medication; and that involves working with prescribers, with insurance companies, with anybody across the health care spectrum that potentially can touch that prescription and care for the patient; that includes special handling of the medication and shipment, storage requirements, a lot of different compliance and adherence reports to make sure that the patient is responding to therapy, that the patient is aware and knowledgeable of what the therapy is going to bring to the table.
So, it's kind of a comprehensive care model from a pharmacy standpoint with specialized drugs and specialized requirements that the traditional model doesn't have.
Kim: Got It.
Randie: To answer your second question, you know, why I chose to move over to the non-profit space, particularly with Good Days is in working in specialty pharmacy, I worked with organization like Good Days on a regular basis and my team did, and the key piece is providing a solution for patients and getting them their medication that they need so that they can live a normal life as best as possible, even with their chronic disease or an illness that they're dealing with. And in working with Good Days as a partner, I really got to see first-hand what the organization stood for; patient first, making sure that that patient doesn't have to deal with extra red tape, that the process is as easy as possible or available and/or Good Days can help connect the patient with a solution where possible down another avenue. I really appreciated that.
Once I joined the organization and saw it on a day to day basis, our patient navigators and the culture that our leadership team has created, I knew it was the right move because it's what it's about. I'm a patient myself. My family are patients with different chronic diseases, including cancer. So, to see this happen on a day to day basis and the impact to make a difference for someone and relieve some of that burden that unfortunately disease brings, sign me up any day.
Kim: Nice. How about you, Clorinda? What made you switch course?
Clorinda: Similar to Randie's background working with specialty pharmacy, I was with the department where every day we're talking to people who are suffering from these life-altering diseases, who can't afford their treatment, and not always was there opportunity to find them this assistance. It was heart-breaking and during that time, probably within my last few months, I became very ill. I, too, had worked with Good Days back then, and it was very rewarding to me when I could tell somebody on the telephone, ‘don't worry, there's an organization out there that can help’. I got diagnosed with ulcerative colitis at the time that I had the opportunity to come and work with Good Days. Even as much as I knew or what I thought I knew about healthcare, it was difficult; the navigation.
So, it doesn't matter how educated you are, once you get diagnosed with something like this, you're worried about your family, you're worried about your kids. There are so many different steps that need to be taken, and I was pretty much in a standstill not knowing what direction to go. So, coming to Good Days was, I mean it, the best decision of my life because it not only provided me the opportunity to help those who are in need of assistance, but it opened my eyes to the reality of chronic disease and how it affects not only you but the people around you.
Kim: Yeah. Well, Clorinda, I think that's a good kind of segue. I'd love for you to tell our listeners a little bit about Good Days’ mission. Who does it help and how?
Clorinda: Absolutely. Essentially, our mission is to help pay the copay for life extending and life-saving treatments for people who are otherwise unable to afford those treatments, as well as offering patients and families additional financial health, including emotional support and guidance to the best available information and support for each specific disease state. Our vision is to have a world where no one has to choose between treatment and the necessities of life. So, we are dedicated to supporting those with life-altering conditions from chronic to terminal diseases, and we do so in part by helping patients pay for what insurance won't and alleviate any of that burden.
But, I think that we do more than simply provide financial support. From day one we've provided answers and information connecting people living with these conditions to the appropriate foundations and support groups, also helping them guide through an opaque and ever-changing healthcare landscape. You know, we're here to listen. We're here to respond and we're here to care.
Kim: So, Randie, I've heard a lot of patients, we sometimes, you know, refer them to different foundations and resources that might be able to help them, they think, ‘well, I'm not going to qualify for that. Those are programs for poor people’ or ‘I don't really deserve that help. There is probably somebody who needs that more. I’m not really the right person for this.’ How do we help people kind of overcome those misconceptions about these assistance programs?
Randie: I think, you know, part of it is everyone being aware of it, right? So, our goal as an organization is, obviously, to help as many people as possible within the regulatory guys; like compliance requirements that our business model allows with traditional copay needs or assistance. We have to have a target audience and that's the under-insured group that we spoke about earlier because, again, from income level, they're not there. They don't have the money to afford the high cost that comes from getting sick and, again, they never asked for that. So, based on that, that combination of being under-insured and their income level increases that out of pocket piece; and that's kind of where we come in. We have clear guidelines established for patients so that they can qualify, and the key piece is getting them to understand that piece and then working through that process that we have in place to allow that to happen. The key piece, again, is being aware that there are services, like Good Days, out there that can help patients when they come across a situation of need.
Kim: Randie, can you describe the application process? Again, it sounds like it could be overwhelming. Is it like applying for a mortgage or applying for financial aid for college? I mean, are we talking about stacks of financials and history and years of reports and things?
Randie: You know, fortunately, we've been able to move further out. Our key goal is to make sure that any application and enrolment process is as simple as possible. We understand it's about people helping people, and patients having to focus on their lives and now they've had an extraordinary situation happen to them. So, we want to make it as easy as possible so that they don't have to go through a lot of red tape. We try and relieve that burden of paperwork where possible. We talked about our patient navigators, who are available via phone. We also have electronic options available through our different portals and website, but for folks who feel comfortable still filling out paperwork in the traditional sense, we still allow that as well.
Our patient care navigators are trained and invaluable wellness partners for anybody who calls into us; and that can be a patient, loved one, advocate, everyone that could fall into trying to help a patient get to where they need to be; to try and identify available resources. That's the key piece and, as I mentioned earlier, if we're unable to help a patient through our own organization, it's helping them connect with another organizations, whether it be for financial needs or for psychosocial support, as Clorinda talked about earlier, or any other need that they may have. That's very important to us. It's again, about helping people get what they need.
Kim: Clorinda, we've got a couple of minutes until our break here, but can you speak to the stigma that some people feel about asking for help or maybe feel kind of getting into the official system, ‘I'd rather just take the money out of my retirement fund or kids' college fund or rather just borrow some money from my brother’. I feel like sometimes it's hard to talk about these financial issues. It's very personal.
Clorinda: It is. It absolutely is and, you know, one of the things I want to say, again, is when you're given one of these life-altering diseases, it's hard to want to ask for help for anything. When I got sick, I didn't want to ask for help. It's a pride. It's a proud thing. But, understand that what we're doing is not giving you something that you shouldn't receive. I mean, people, like Len Rodgers, worked all their life. They've tried to make all the right decisions and now they come to a point in their life to where they're in a bad financial situation, not because they didn't prepare, but because they were given a disease that they weren't expecting.
So, we have a strong desire to help and, you know, the hardest thing to do is just pick up the phone. I assure you that once you do, you don't know that we're grateful for it and we're not giving you something you don't deserve. We're helping you so you can continue to live the life that you were given and be that support for your family.
Kim: Just before we take the break, Clorinda – and we're going to repeat this after the break – how do folks find you?
Clorinda: Many different ways. Typically, because of the type of medications that they're taking, healthcare providers, specialty pharmacy, will tell our website www.mygooddays.org. You could go to any of those things and our phone number is on there. It's a good way to connect with us.
Kim: Great. We'll repeat that after the break.
This is Frankly Speaking About Cancer. We're talking to Good Days about the financial support and assistance that they provide to people with serious illnesses, including cancer. We do have more to discuss with our guests; Clorinda and Randie from Good Days. We're going to take a quick break. This is Kim Thiboldeaux. We'll be right back.
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A fresh look at today's health; Voice America: Health and Wellness. You're 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's your host: Kim Thiboldeaux; President and CEO of the Cancer Support Community.
Kim: You're listening to Frankly Speaking About Cancer, and today's episode is being brought to you, in part, by Bristol-Myers Squibb, Celgene Corporation, EMD Serono Indicator Oncology. I'm your host; Kim Thiboldeaux. We've been having an in-depth and insightful conversation about the financial impact of a cancer diagnosis with Clorinda Walley and Randie Odebralski of Good Days. Good Days is an organization that specializes in providing financial help to seriously ill people, including those with cancer.
I can't believe today's episode is nearly over. I still have so many questions to ask you guys, but I'm going to force myself to prioritize and try to get the most important ones in before we run out of time. Randie, is it more difficult to find financial assistance if you're diagnosed with a rare cancer or, I mean, does that make a difference?
Randie: You know, Kim, I think that the sad part is that it's unfortunate to realize that finding assistance is becoming more difficult across the board. We go back to talking about the specific group of under-insured patients that we service are the Medicare population, and the need far exceeds the dollars needed. That's not just in the area of oncology, but it's other traditional chronic diseases, if we're going to categorize them, such as rheumatoid arthritis, multiple sclerosis; and, especially, as newer diseases or newer classifications come out, it becomes more of a challenge and it all comes down to funding availability. If the funds are available, then you can definitely provide that assistance, but, as I mentioned earlier, the need unfortunately is far greater than those dollars available. So, the difficulty continues to increase. The sad part of our business on a daily basis is we want to help as many people as we can and unfortunately, we can't help everyone that needs it.
Kim: Clorinda, one of the things that I struggle with sometimes is understanding sort of who's responsible for this conversation. A lot of our patients never bring up money or finances. Patients don't even know what they don't know. Not all practices have nurse navigators and financial counsellors, and if you're diagnosed with cancer, what do you need to know? When do you start these conversations?
Clorinda: So, you know, that's the difficult part because today's model isn't built to support and reimburse the healthcare providers to develop and spend the time that they need to discuss with the patient the many distresses that come with cancer; including financial toxicity and psychosocial support. So, what we've realized here at Good Days is we're all responsible. I think that we all have a fundamental responsibility to take care of the people around us. So, until our healthcare system changes, organizations; like Cancer Support Community, like Good Days, and others like us; are going to be responsible for trying to put enough resources out there and spread the word through every resource available; whether that's Facebook, twitter, website, conversations like this; to try to inform people of the different types of assistance that are available to them. Again, I think that that the two pieces that are missing to fulfil the healthcare circle are psychosocial support and financial toxicity.
Kim: So, Clorinda, the cost of care seems to be in the news a lot lately. I mean, it obviously came, like quite a bit, through the affordable care act and now with the tax bill and the partial repeal of ACA. So, what do you wish that legislators and policy makers understood about the financial impact of a cancer diagnosis? Is there a sort of an ask or a call to action for those folks?
Clorinda: There is. Today's treatments aren't like they were in 1982. You know, we've got revolutionary medication that is not turning terminal illness into chronic disease, it is living proof of what these medications can do. I think what our legislature need to do is gain a true understanding of what the need is, what the costs are; because the patient doesn't determine those, we don't determine those. You get diagnosed; you're going to choose or your provider's going to choose the medication that is going to best treat your disease. So, we need our congressmen and our legislatures to get behind the fact that the average American that we help here at Good Days; and we help about 130,000 patients a year, has an average income of $36,000. Their out of pocket costs for their insurance for these drugs is about $30,000. So, the two ends don't meet. We're a bridge to a better healthcare. So, legislatures and even some insurance giants want to do away with organizations like us and that puts second financially constrained patients in dire circumstances and it makes no sense for the government to not aid us or prevent us from assisting people with these conditions.
Kim: So, are there any specific policy or legislative initiatives that we should be keeping an eye on, Clorinda, right now?
Clorinda: Well, yes. You know, there is one that's called the Access to Marketplace Insurance Act. What is taking place today is there are so many charities, like Good Days, that help some patients who can't afford their premiums for their insurance plan. So far, there have been 42 states where the insurers are denying coverage to patients who received assistance from a non-profit to cover their premium. This is unfortunate. We're talking about people who have terminal or chronic disease. They can't get healthcare, they can’t get treatment if they don't have insurance. Last week we got about a hundred cosponsors in the US House of Representatives on a proposed bill to correct it, and you know, the issue has to do with harmful CMS guidance that allows insurance to reject our payment.
So, I think that this is a very important one. Again, it's called the Access to Marketplace Insurance Act, which essentially will prevent insurance plans from rejecting a charitable company from paying a patient's premium.
Kim: Randie, as we get to the end of the show, just tell us quickly how is Good Days able to do what you do? Do your partners, do you, have funders who are funding your work, and can you just take a minute to tell us about that?
Randie: I think there are different ways in which we're able to provide support. Obviously, we have both corporate and in grassroots initiatives for donations that allow us to provide service to the patients; that's working in collaboration with the different healthcare providers out there. We talked about specialty pharmacy earlier, but also providers. And then, most importantly, it's connecting with different groups; advocacy groups, other folks who put people and patients first; and then figuring out how to work on solutions that not only mirror our initial model of providing financial assistance, but also expand into other areas, such as psychosocial support that Clorinda talked about, and other means to make the lives easier for folks affected by chronic and life-altering diseases.
Kim: Got it. Clorinda, as we wrap up here, tell us again how folks find you? How folks learn about what funds and resources you have available? Give us a little bit of a roadmap.
Clorinda: Absolutely. The best way to kind of find out all the different resources that we have available is to go to our website; which is www.mygooddays.org. We work with many healthcare providers in the country, as well as specialty pharmacy, who are very familiar with our services but, certainly, the best way would be to go to our website. There's a lot of navigation. They are also free to call us at 8-779-687-233.
Kim: Why don't you say that number again?
Clorinda: And, they are also free to call us at 8-779-687-233, and our patient navigators will be waiting to help.
Kim: Terrific. Clorinda and Randie, thank you so much for being on the show today. It's really been a pleasure and we're really happy to raise awareness of these important resources for patients and families. I’m Kim Thiboldeaux, from the Cancer Support Community, and I just want to remind folks about our many free services for people with cancer and their loved ones. We have 47 centres around the country. We have support groups, educational programs, nutrition, exercise, stress reduction for people with all cancers and their loved ones. You can visit us at cancersupportcommunity.org or call our help line. You could speak to one of our counsellors today at 1-888-793-3955. 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 host, Kim Thiboldeaux. We're here for you every Tuesday afternoon at 1:00 PM Pacific time and 4:00 PM eastern time on the Voice America: Health and Wellness network. In the meantime, stay connected online at cancersupportcommunity.org. That's cancersupportcommunity.org.