Paying for Cancer Treatments: Financial Navigation & Support

•Shop: Go on the web and find out what the best deals are for your services, including drugs and the best insurance company for you. Use GoodRx or QuickRx. Use The Assistance Fund. Also, as your drug needs change, the plan you're on may no longer provide the least expensive options. Mike Yancey found a plan that offered a lower cost for the drugs he was currently taking, but he also wanted to plan for the future, which included other drugs. He chose the lowest cost plan based upon everything, even though he might be paying a little bit more for his current drugs in the beginning.

•Contact the manufacturer : Pharmaceutical companies have medication assistance programs which offer reduced prices for patients who ask. NeedyMeds can help you through the process.

•Get help: Get someone to take care of bill paying for you, so you can reduce your stress and focus on taking care of yourself. The Patient Advocate Foundation provides case managers who “advocate and mediate on behalf of patients to provide avenues of access for therapies, therapeutic agents, and devices deemed medically efficacious by the medical and scientific communities, while working to find sources of reimbursement to pay for care.” The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab/Prostate Cancer Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Meeting Notes The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab/Prostate Cancer Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. KEYWORDS drug, nancy, people, cost, pharmacy, part d plan, rick, kevin, treatments, month, pulsing, infusion, prostate cancer, covered, paid, life, cancer, story, year, rx SPEAKERS Kevin Fordney, Mike Yancey, Noel Resch, Eric Hall, Brad Power, Brian McCloskey, Nancy Novack, Rick Stanton, Jim Ward Brad Power This session is about paying for cancer care. This is one of several personal topics that are different from our typical discussions on scientific topics, such as testing and matching with treatments, biomarkers, and functional testing. There are several personal issues that cancer patients deal with. We've had a couple of sessions on nutrition, and we'll have a couple more. Managing financial issues is something that we know is an issue. The motivation for this session came out of a conversation I had with Kevin Fordney, who told me about a hack he used to get around some of the pricing challenges he faced by shopping around using GoodRx. I've been in contact with Nancy Novack for a long time. I'd heard about her work at Nancy's List, and I thought she would be a perfect person to bring, given her wide experience in this and other issues related to challenges people face when they get a cancer diagnosis. Nancy Novack 01:43 What I bring to the table is that I was diagnosed in 2004 with stage IV ovarian cancer. I knew nothing about cancer. In fact, when they said it was stage IV ovarian cancer, I said, "Thank God it's not appendicitis", which they thought it was. And then I said, "Well, what's stage five?" Note from Glenn Sabin: Nancy is also a subject of Harvard's NEER--Network of Enigmatic Exceptional Responders. https://glennsabin.com/the-mindset-of-exceptional- cancer-responders/ During my many, many long, aggressive infusions at Stanford, where I was treated, whenever I had the opportunity, I invited my fellow sisters and brothers to tell me their stories. I'm a clinical psychologist. I can't stop talking and asking questions and wanting to understand what people are going through. I was very struck by the helplessness and hopelessness and isolation and distrust and just anguish that these people were feeling. What was striking, and what changed my whole life, was finding out that they weren't so much fearful about living or dying, as they were about the money, that they didn't have the money to get treated. They thought if they told their doctors that they weren't taking their medications because they couldn't afford it, they wouldn't get treatment. This is pretty hard to hear. Some of them were scared to pieces that if they told their employer, they would lose their jobs. If they had insurance, it wasn't good enough. They just didn't know how to pay for basic living expenses. People would say they had to choose between food on the table for their families or taking their meds. They chose their families, of course. They didn't tell the doctor they weren't taking their meds. This one man told me that he was considering suicide because he was a financial burden to his family. I went nuts. This was so unacceptable to me especially in this country that people were more concerned about living that they couldn't afford to live than anything else. I vowed that I was going to find the money because I knew it was out there. I knew there were organizations or people or whatever that could support people who were being treated at Stanford and everywhere else around the planet. They didn't have to go through this stress. From a professional sense, I know that stress doesn't help any of us with our cancer issues. I needed to find a way to mitigate the stress of financial concerns, so I started this project. I had started a nonprofit in 2006, which was called Nancy's List, and it was just going to be a list (that was my main plan) of financial resources that I could research and give to the people who needed them the most. Luckily, I met amazing people along the way and learned, as many of you know, that there are angels in our midst as we go through cancer. There are a lot of incredible people and organizations who want to be helpful. That's what they're there for. It's important that we learn how to navigate the financial system of cancer treatments, so that we can be on top of what we must do. I have my own personal experiences with financial disasters, from getting bills from Stanford for tens of thousands of dollars at a time. Even though I had a fancy PPO, they didn't cover everything. This is my gift. This is my love letter to the universe, and thanks and gratitude for my recovery. No more recurrences. That's why I'm here. Mike Yancey 06:02 I've got a little slide deck here that provides a little bit of insight as to some of the challenges I see as I go into 2023, knowing full well that I'm a Medicare Part D eligible patient. There's a lot of issues with that with the thousands of plans they have on the medicare.gov website. You can try to provide them the information as to what drugs you're on, but the biggest challenge is that you never know what might be new tomorrow, depending on your cancer, your treatments, etc. As I've already mentioned, the biggest issue is not knowing what you might need, which makes "least cost planning" often a challenge. When you go to the medicare.gov website, you'll see there are thousands of plans. It basically asks you for what drugs you're taking, or what do you think you might take, and then it gives you a whole plethora of different options at different costs. This is an example where I took the drugs I'm currently taking, plus one of the CureMatch options of two- and three-drug combos that have been recommended to me. I have used those, and on this page at the bottom, I've included Everolimus and Iclusig. This shows the monthly costs for the standard drugs I'm currently taking plus the CureMatch options, should I need to start taking them. This example assumes that I take them starting in January 2023. The total cost is $24,492 plus the annual premium of $339.60. It gets pricey quickly. Then I looked at what the current drug list alone is without the CureMatch options. As you can see, it drops significantly because the two CureMatch options are pricey. But I'm still looking at over $4,300 per month. If I consider the CureMatch only options, those come to about $22,386. Why is there a difference in the bottom line? The reason is called the "Doughnut Hole" in Part D space. When you're taking multiple drugs, then they get offset a little bit. So you do see a slight differential between the CureMatch-only drugs and my current drug list with that CureMatch. There's a slight difference of about $2,265 where they're basically spreading those costs across those different drugs. As drug needs change, the plan you're on may no longer provide the least expensive cost options. With my example, I could find a different plan that offered a lesser cost for a subset of drugs, i.e.. the standard drugs I'm currently taking, but I also wanted to plan for the future, which includes the CureMatch drugs. I chose the lowest cost plan based upon everything, even though I might be paying a little bit more for my standard drug list in the beginning. Another example I ran into this past year was with a doctor who wanted to put me on abiraterone. My original cost was $2,300 a month. So I reached out to the manufacturer for financial assistance, but they weren't much help. Then through my current Part D plan, I get a revision to about $1100 a month. I'm a tightwad to some degree, so then I got Humana to bring it down to about $500 a month. From my perspective, that was still too much. So I did some Googling and found a company called QuickRx out of New York. Because there are a lot of fly- by-night online pharmacies out there, I wanted to be very careful. I checked the FDA site, and confirmed that QuickRx was indeed a valid, FDA-approved pharmacy. QuickRx quoted me $240 a month for one year, and they would guarantee it for one year. They claimed they had benefactors that wanted people to have their drugs, so they were able to offer cheaper drugs. They could do it one year at a time. I accepted their offer. What's interesting is that within the last two months, it's dropped from $240 to $180 a month. It's very competitive for abiraterone. For 2023, I'm looking at the Walgreens Part D plan. It does make my abiraterone a little bit cheaper as I go forward.