Kathy D. Miller, MD: Hi. I'm Kathy Miller, professor of medicine at the Indiana University School of Medicine in Indianapolis. Welcome to this edition of Medscape Oncology Insights, coming to you from the 2015 Annual Meeting of the American Society of Clinical Oncology (ASCO).
In recent years, the costs of new cancer drugs have soared, creating a dilemma for clinicians and patients alike. To discuss what can and should be done about the rising cost of new drugs, I've invited three very special guests.
First, Dr Leonard Saltz, professor of medicine at Weill-Cornell Medical College and chief of the gastrointestinal oncology service at Memorial Sloan Kettering Cancer Center in New York; Dr Michael Fisch, medical director for the medical oncology programs at AIM Specialty Health, right here in Chicago; and our special guest, Erika Brown, chief program officer for the patient community at the Chris4Life Colon Cancer Foundation in McLean, Virginia. Welcome to all of you.
Double Survival, and Raise Costs 500-Fold
Dr Miller: Leonard, you've been a vocal proponent for having discussions about costs of the drugs that we use. When did you see a tipping point where this became such a crucial issue?
Leonard B. Saltz, MD: I actually made a slide for a talk at ASCO in 2004 when we were looking at the cost of the drugs that we had started to incorporate into colorectal cancer—bevacizumab, cetuximab, oxaliplatin, irinotecan—and showed that if we treated a patient with each of these drugs to its logical extension and the patient were able to complete the planned course of all therapies without dose modifications, that we would have doubled survival based on historical controls, but that we would have moved the cost up 500-fold. That would be close to a quarter of a million dollars per patient for lifetime cost of drugs.
Dr Miller: I want to jump to Erika because Erika is a colon cancer patient with personal experience with what we've come to think of as the financial toxicity of new medicines. The new medicines have real gains for efficacy, but can any of our patients afford them?
Erika Hanson Brown: No. Just to start out bluntly, it's a very, very difficult deal that we face when we're diagnosed. In my case, I was diagnosed at the end of a couple of years of not having been able to bring in any income. I was really starting at ground zero. I work with a community of patients today that I've created, and I hear these cries for help. They are looking for hope from everybody 24/7, and their families alike. It's really a terrible situation.
Dr Miller: I'm going to ask you about some specific myths. With changes in healthcare and many insurance plans now, including prescription drug coverage, [presumably] the increased cost of drugs doesn't get passed down to patients because there are out-of-pocket maximums. Patients only have a small copay. They may only pay 10% of their drug costs. In real dollars, do we know what this means for patients' pockets? What costs are we asking them to absorb?
Ms Brown: I hear stories of tens and hundreds of thousands of dollars that patients are required to pay back. This is at the commencement of their treatment when they are trying to find a way to survive this terrible disease and have their families be fed. The magic percentage isn't magic at all. It's terrifying. It's 20% copays that the payers are requiring of these people, who are like me. They often come to the treatment center poor and penniless because they've been sick for such a long time. It's a tragedy. It really is.
I know personally that I didn't have to pay anything like that in copays 12.5 years ago. I know, too, that I had no income. I had to pay $100 in copay for every visit. I didn't have it. Fortunately for me, my provider helped me with a scholarship, but not everybody has that. People sell their homes and dig into their pockets, ask their relatives, do fundraisers, and just put it on their [credit card] and wonder how they're going to pay it later. It's very, very difficult.
Dr Miller: Michael, you have looked at this from a couple of different perspectives in your previous role as a medical oncologist at a couple of different institutions—from leading a program at MD Anderson, and now on the specialty health side dealing directly with the costs of care. How have you seen this issue from those two different worlds?
Michael J. Fisch, MD, MPH: It has been very enlightening for me. One of the things I've worked on as a medical oncologist and a palliative care specialist is trying to reduce suffering, where suffering is anything that threatens the intactness of the person. One of the things that can enhance people's suffering is the cost of care and the trade-offs that they have to make. People don't necessarily want to forego their children's college education to get the medicines that we might be recommending as the best. Sometimes they might. It really depends on the circumstances.
I realize that these are not concepts that palliative care physicians or people who make patient-reported outcome measures have figured out how to take into account. Oncologists haven't always learned how to ask these questions of patients and how to think in this dimension.
Time to Talk About Costs With Patients
Dr Saltz: I think that's a very important point worth emphasizing, that we have not, for a long time, been talking to our patients about cost. It has been one of the taboos. It's really kind of remarkable when you think about it. We ask patients very casually about their bowel function, bladder function, and sexual function. We don't have any discomfort with that. As soon as they talk about money, we are not comfortable with that.
Dr Miller: Do you think the lack of comfort is because we don't know what these treatments cost?
Dr Saltz: We don't know, but we have to learn how to do this. It's not normal to feel comfortable talking to somebody about the things we talk about. It's part of our training. It's part of our job to learn how to do that because we need to do that to help our patients.
Similarly, we need to be able to understand what our patients are up against. We couldn't possibly take care of patients if we couldn't accurately describe what kinds of side effects they might be exposed to. We also have to be able to describe what kinds of financial side effects they will have. What is their deductible? What is their copay? What is their copay for a specialty drug? What is a specialty drug? What does cost-sharing mean?
Dr Miller: Cost-sharing sounds good because it sounds like someone else is going to share the cost.
Dr Saltz: They are. They're going to share their cost with you. Your insurance company is going to share some of that cost. You get to pay it yourself. Cost sharing is something of an Orwellian term, but it is creeping into our vocabulary more and more. Patients may have heard of it, but they don't understand it. If we don't understand it, we can't help them understand it, and we can't make the kinds of choices with them that might matter. There may be alternatives that have dramatically different financial toxicities and that may be important to our patients.
Dr Fisch: I think we're used to being the experts. We like to have the information. If we talk about a sensitive topic like sexual dysfunction, we know how often that might occur and we know how to address it or what kind of referral to make. But with cost, we might not feel like we have the data or know exactly how to handle patients' concerns. But I think there's still an opportunity to just explore it: Help me understand what "costs of care" means to you. Do you have concerns about that? Just be brave enough to ask the question and see what people have to say about it.
Dr Miller: Erika, you look like you were making a face. I couldn't read if you were thinking that was a total cop-out on our part. How would patients, from your perspective in your interactions with your patient community, take that open discussion about cost?
Ms Brown: I think they would welcome total authenticity or sharing of all this information. I was reflecting on my own experience because that's where I'm expert. My experience was that I just wanted to live and I didn't care what it cost. I never asked what the costs of my drugs were. I knew I had a problem in getting my treatment and making the copay, but I never asked what it cost.
Increasingly in our conversations, people understand that if they are prescribed bevacizumab (Avastin®), it costs $5000-$10,000 a shot, and they talk about it that way. They say, "I can't do this, but I can't not do this." My personal feeling is that people want as much information as they can get, any way that they can get it. That's something that we as patient advocates encourage patients to do, so that they can be more active partners in their treatment. That said, it's a lot of new information for people to absorb.
But how do you make that decision? I want to live and they think this treatment is going to cure me. What do I care what it costs?
$1 Million/Year -- for Parts, Not Labor
Dr Saltz: I think it's very important that as we talk about cost, we also have a reasonable assessment of what the goals are. What are realistic goals? All too often in medical oncology, cure is not a realistic option. Patients have a difficult time understanding that because it's such a hard thing for a human being to accept. Within that context, helping someone make reasonable choices can be a real challenge. The kinds of numbers we're talking about are pretty scary, and patients often don't have a clue that, for example, if we decide to use a growth factor to stimulate the white blood cell count, that's going to be an extra $10,000-$12,000/month. That may or may not be something that they're going to pay a chunk of.
I talked to you before about being worried about a lifetime cost of drugs of a quarter of a million dollars. We're looking at drugs and regimens at this ASCO meeting that exceed that in a year. In fact, we're looking at drugs that, for a single drug for a single patient for a single year, will exceed $1 million for common diseases. We're not talking about rare specialty items, but pembrolizumab (Keytruda®), the PD-1 inhibitor, one of the poster children of immunotherapy, one of the most exciting new developments that is truly helping human beings. But at the doses that we see in a number of abstracts in the New England Journal of Medicine,[1,2,3] those doses for a 75-kg patient will work out to just over $1 million/year. That's just the cost of the drug. That's parts, not labor. It doesn't include doctors' fees, nursing fees, pharmacy fees, hospital fees, heat, lights, real estate of wherever you're getting that drug, and dealing with complications. Those are all extra. These are massive numbers.
Imagine if somebody has 5% or 10% responsibility for that. They need to know that going in and need to know about what other alternatives there are, other options. What's the realistic goal? What is the best that has happened? What's the average? What is the worst that has happened? What are the side effects? All too often, everyone assumes that they will be the one to have the miracle response.
Dr Fisch: Don't they think that if it costs $1 million/year, that it must mean that it's going to cure them, that there's a relationship between the cost and the outcome?
Dr Saltz: We have lots of data to show that there is no relationship between cost and efficacy, and that the costs of drugs seem to be [based on] little more than what the seller believes the market will bear. When we look for correlations with efficacy, when we look for correlations with innovation, and when we look for anything that would be a typical market force, we don't see it.
Another Take on Personalized Medicine
Dr Miller: The patient perspective is interesting. I think Michael hit on something important. It's difficult for patients in that situation to say, "I don't want to do this because of the cost." It's sometimes even more difficult for their family members to say, "I don't think dad should get this drug because our family can't support the cost for those decisions." So much so, that when we run up against a patient who says something very reasonable, it seems very shocking to us.
Within the past 6 months, I saw a very new patient who was newly diagnosed with metastatic breast cancer. She was admitted to the hospital with symptoms of central nervous system disease, and that is how she came to our attention. When I talked to her about treatment options, she said, "No. I know what this is. I know what I've had for years. I know this is going to kill me. It's going to kill me no matter what you do. My husband and I have worked hard our entire adult lives. We just paid off our house and it's worth $55,000. It's not much, but it's all we have. It's all we have to leave to our children. If you treat me, I'm dead and my family's broke. How is that better than if I'm dead and they still have the house and a future?"
I was honestly stunned. I had to admit that she said nothing illogical when you look at all of the goals and what I could realistically accomplish, what her out-of-pocket costs would be. Nothing she said was unreasonable. In fact, I think her decision was entirely rational. But it was shocking at the same time because it's not the sort of honest conversation about cost that we usually have.
Dr Saltz: I think it's a look at where we need to be. We talk about personalized medicine and everybody wants personalized medicine. To some people, that means a molecularly defined therapy going after specific vulnerability in the cancer. That's beautiful science. That's good medicine. We all want that. But the other type of personalized medicine is understanding each patient as an individual, understanding who this person is, what his or her concerns are, what his or her fears are, what his or her realistic hopes are, what his or her unrealistic hopes are, and how we can help them work through all of that.
It sounds to me like you had a patient who had a lot of angles to consider and a remarkable ability to do that. I think many people have that ability if given the information. Sometimes information is just very hard to get. We're also talking about numbers that are beyond what most people even believe could be possible.
Cost Only One Part of the Value Equation
Dr Miller: Mike, I want to take you to one of the organizational structures that has been proposed as a way to control cost and maybe to increase quality of care as well. I think controlling cost is a driving feature behind the move to clinical care pathways. In some ways, that's almost the opposite of what Leonard just said. It's taking us away from individual decisions about care and following one common pathway. Do we know enough yet about pathways? Do they control costs? Do they have that function for us?
Dr Fisch: The evidence says that they do control costs,[4] but I don't think of pathways as being a cost-minimizing intervention per se. Pathways means different things to different people. The way that I think about them in my company has more to do with trying to drive quality and value. What do people want? They want care that is consistent with evidence-based guidelines. They want things that are patient-centered that take into account their values and preferences, and that are inclusive of whatever is needed, what tests they need and such. What we have found is that when you use pathways, giving oncologists not just one choice for any setting but a subset of all of the reasonable choices that could be made that are considered high-value optimal choices, you can improve the outcomes of patients and also reduce cost and drive value upwards.
Dr Saltz: You brought up a very important term that we haven't used in this discussion yet, which is value. We've been talking about costs. They are different, but they are inextricably interrelated. For whatever regimen we're talking about, when we say that it has a certain value, that value is a ratio of its benefits and detriments. One of those detriments is the cost. You can't know the value of a regimen without knowing its toxicity, its benefits, and its cost.
If you have a regimen of a certain value and you have the [reasonable] cost, the value goes way up. If you have a regimen of a certain value and you double the cost, the value goes way down. As we talk about high-value care, we can't let ourselves get away from discussing cost. It's going to be a real challenge to discuss the value of a care that costs $1 million/patient/year without considering how that cost pulls down the value. It doesn't take away from the benefit. The benefits are very substantial.
Dr Miller: By your analogy, the great colon cancer success story that first got you thinking about cost is actually the anti-success story. Survival went up about twofold. Cost went up 500-fold. From a value proposition, that's moving in the wrong direction.
Dr Saltz: It is difficult to describe some of the most interesting drugs that we've gotten most excited about in oncology over the past 20 years as high value. We can describe them as high benefit or low benefit. Some of them are low benefit and high cost. You look at a drug like erlotinib (Tarceva®), used in pancreas cancer. It improves the median survival by 12 days,[5] at $8000/month with toxicity. Yet, it became part of standard care pathways. I don't think that's a high-value undertaking.
When you look at the issue of value vs cost, you have to remember that the cost is not something that is set in stone. It's something that can move. We saw that happen when we made the decision at Memorial Sloan Kettering not to use the drug ziv-aflibercept (Zaltrap®) and wrote about it.[6] The result was that the company halved the price.[7] The drug didn't change. Its efficacy, or lack thereof, didn't change. But its value went up because its price went down. The price is not something that is inextricably related to anything other than what the company chooses to charge. There are forces in a marketplace that can affect cost. I think we're going to start seeing more and more of that as people start to look at these astronomical prices and say, "I can't afford it." If enough people say that they can't afford it, the price will come down until they can.
What One Change Could Slow Increasing Costs?
Dr Miller: In our last couple of minutes, I'm going to give you each a chance. You are now king or queen for the day. What one change would you suggest that might actually address or move us closer to solving this problem of increasing costs? Because despite all of our talking, costs are still going up and we still have the same problem. Erika?
Ms Brown: I knew you were going to start with me. I keep thinking, as I'm listening to this, what is the value of hope? Again, I'm coming at this as a patient. I'm reflecting on all of the conversations that I've partaken in, where people are willing to do anything to find hope and maintain their hope. They're willing to give up absolutely everything. Exclusive of your patient. It was quite astounding that she was that realistic. I'm not sure that I could be that way. All I can think of is how important hope is in this whole thing. Also, I obviously love the fact that you got the drug companies to bring costs down with that particular drug. We all watched that. I want there to be more clear discussions between patients and doctors about the realities of what they're embarking upon.
Dr Saltz: I think that's very important, but within that context, there has to be realistic hope. Hope has to be tempered with realism. When you say, "What is the price of hope?" The answer is, "I don't know. Let's discuss it, but there is a price." There is a limit beyond which it becomes counterproductive for the patient, the patient's family, and society. We can't just say that hope is important, and therefore, there's no limit to what we'll spend for it. To some degree, that's the mistake that we may have made in medicine over the past 20-30 years. Not to take away from hope. Hope is critical. The ancient Greeks understood that hope is so important. It's what was given to mankind after Pandora opened her box and let all of the torments out. The gods gave mankind hope so that they could tolerate all of the other torments.
We want hope, but at some point we have to focus on what we can hope for and what it is costing us to maintain that hope. Ultimately, we have to come to an open discussion about what your values are. What do you want? What hope do you want? Here's what somebody else wants for that drug. How much hope does that drug really supply and can we afford it? Can you afford it?
Dr Miller: Erika and Len are going to have the same goal: open, transparent conversations that include real goals and real assessments of the cost. Michael, do you have a system fix for us?
Dr Fisch: I'll say two things. One, I think you can evaluate programs that reduce low-value prescribing, like pathways, just like you would a drug if it reduces costs and maintains or improves survival. You can evaluate it like anything else empirically. I want to see more evaluation of programs that do that and see what their actual value is. Second, I think we need tools for transparency that help patients and clinicians gauge the actual out-of-pocket costs and what people are really dealing with. I think transparency plus education will help us get to it best.
Dr Miller: Len, Mike, and Erika, thank you so much for joining me for a thought-provoking discussion of this important topic. To you, our audience, thank you for joining us for this edition of Medscape Oncology Insights. This is Kathy Miller, reporting from ASCO 2015.
Medscape Oncology © 2015 WebMD, LLC
Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
Cite this: Money Talks: Solution to Soaring Costs of Cancer Drugs? - Medscape - Jun 15, 2015.
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