Published on May 28, 2019
In the afternoon session replay of our “Making Sense of CLL” town meeting, a panel of experts, including Dr. Jeff Sharman, Dr. Jeffrey Menashe, Dr. Michael Choi and Jeanne Schaffer, discuss strategies for managing life with CLL and seeking out the best care. Learn more about tools for self-education and advocacy, assistance programs, vaccine recommendations and more. Financial navigator Dan Sherman also joins the program to share advice and resources for patients and families dealing with cancer-related financial toxicity. In the final portion of the program, an audience of CLL patients and their loved ones pose their questions to the panel in a Q&A session.
This town meeting is sponsored by Pharmacyclics LLC and Janssen Biotech, Inc. in partnership with The US Oncology Network, Compass Oncology, Willamette Valley Cancer Institute and Research Center, The CLL Global Research Foundation and The Leukemia & Lymphoma Society (LLS).These organizations have no editorial control. It is produced solely by Patient Power.
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Transcript | Making Sense of CLL: Session 2 Replay
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
We’re going to get into a new phase of this discussion now.
First of all, we’ve been getting in some great questions. Hopefully, those of you here in Portland in the room—can we get a shot of our whole crowd here again? We have our folks back here and then we have people around the world, hundreds of people. We welcome your questions. Be thinking about it.
The questions are not just about what tests should you have, what treatments should you have, this whole alphabet soup of monoclonal antibodies and CD this and MRD and some people say, “Whoa, there’s a lot of science.” So, obviously, we have some people that are newly diagnosed just trying to make sense of, “Do I need treatment What do we do? Do I have the right team?
Other people who have been living many years who may need a second or a third treatment and we’ve been learning over the years what this stuff means. So, we’ll try make sense of it and we welcome your questions, including should you be checked for measle titers because you’re worried what is your immune system like and should you worry about a measles outbreak here in the US.
So, we’re gonna cover all those kinds of things or what Jay Blatt asked about in the opening video about clonal evolution. We’ve got measles—should you have a booster? Do you still have immunity? Are you have clonal evolution? We’re all over the map. We’ll try to make sense of it.
But one of the issues that we all face now, particularly the way our insurance is set up in the US is the insurance for oral therapies is often different. But as you heard, we’re talking about Imbruvica, maybe at some point approval for Calquence, idelalisib, venetoclax (Venclexta)—all these different things, these are oral medicines and your insurance may pay for them differently in the infused therapies you might have.
So, there’s a question—do you have military benefits? Do you have commercial insurance? Do you have Medicare? I have Medicare here in the US and I have Medicare Part D. So, the deal there under the way our laws are now is in oral therapy, I have to pay 5 percent of the retail cost. These medicines, many of them are $150,000 a year. So, that’s a chunk of change.
If you work, is there assistance for you? If you’re retired, are there assistance programs for you, either from the drug company or from a nonprofit association, from the Leukemia and Lymphoma Society? That’s what we’re gonna talk about for a minute.
So, this fellow, Dan Sherman, who’s on the screen, Dan, I came across on a social media thing for business called LinkedIn. He was speaking out as an oncology financial navigator. He’s in Grand Rapids, Michigan with a group called Mercy Health, I think it is.
He’s devoted his life now not just to counseling cancer patients at his own hospital, but educating people to be financial navigators anywhere in the US in an increasingly complicated system. Here in the US, for most of us here watching, we’re approaching our extended election season. One of the issues, the big issue is healthcare costs.
Cancer costs are like way up there. So, there’s a term that Dr. Sharman used a little while ago called financial toxicity. So, it’s not just the toxicity of a cancer medicine, but it’s the toxicity of the cost of care. How does it affect you depending upon what coverage you have or your spouse, etc. So, that’s what we have to talk about.
Increasingly today, we want the breakthrough therapies and we want assistants to help us get the care we need and deserve. That’s what financial navigators do, trying to use all the resources that exist. I’ll mention just two things along the way.
One is let’s just take Imbruvica or ibrutinib as an example. They, as a drug manufacturer, Pharmacyclics, have an assistance program. AbbVie that makes venetoclax, Venclexta, they have an assistance program. Can the drug company help you? Or are there foundations that can help you?
Believe it or not, some of these funds are not exhausted. You think, “Oh, it’s all gone.” Maybe you’re somebody who never asks for assistance and asking for assistance just rubs you the wrong way. Somebody else needs it more than me. Dan’s gonna talk about that.
So, let’s hear from Dan. We’ll discuss that. We’re gonna meet our patients. We’re gonna talk about the whole enchilada about living with CLL for you with the family members who support you. Okay? So, Dan Sherman.
When it comes to financial navigation services, I think there are going to be several different answers to this. In some medical settings and some oncology, social work is going to be involved with this. So, you might want to ask for the social worker that works in the cancer center to see if they are addressing the issue of financial toxicity or assistance with getting access to these drugs.
Sometimes there are financial counselors within these settings as well that you can ask for and preferably—and this is my motivation here—is to get more and more facilities starting to deal with the concept of financial navigation services because financial navigators who are well-trained can dig a lot deeper into this problem and try to find solutions that are more effective for a lot of our patients.
All right. Let’s get a little more concrete. I should tell our audience—you have a social work background.
There’s such an emotional overlay of, “Oh my God, I want to beat the cancer, but I don’t want to lose my house in the process.” So, let’s talk about what we can do. So, is the starting point understanding what are the insurance benefits you have and having somebody help you look at that? Is that the starting point? Can it be tweaked as you go through cancer care?
So, yes, that would be the starting point. Having somebody there, I have some expertise in understanding the different cover systems that we have, as you’ve already mentioned, there’s Medicare, commercial coverages, the marketplace, veterans’ benefits. The list goes on and on. Each one of those systems are going to have different out-of-pocket responsibilities for their care.
In the world of Medicare, unfortunately, with Medicare Part D, which most oral medications are going to be covered under, when they end up in catastrophic coverage, they end up paying 5 percent of the cost of that drug. When these medications are costing $10,000 a month, 5 percent is still a lot of money on a monthly basis.
So, really understanding that coverage is certainly the starting point. At that point, you’d want to start looking at is there something that we can do to add to this coverage. If that’s not a possibility, then we start looking at can we utilize co-pay assistance programs or even patient assistance programs from pharmaceutical companies.
Now, let’s talk about that. Many people who are diagnosed with cancer have maybe never needed charity before. They’ve made their own way in their life. Yet, you’re talking about assistance programs. We’re talking about people who have maybe never asked for assistance and are kind of embarrassed about it. What would you say to people about asking for assistance and really exploring this?
Well, the first thing that I would say is I have a full-time job addressing this issue, which means that the person I’m speaking to is not the only person dealing with this problem. They are not alone. In fact, at our facility, where we see approximately 1,300 new oncology cases per year, we have over two full-time financial navigators that are addressing this issue on an ongoing basis. Our case load is full.
So, the percentages of individuals dealing with this issue is very, very high. When you start talking about individuals who are 300 percent, 400 percent, 500 percent of the federal poverty level, which is going to be at least 80 percent of the population, that entire population is going to be struggling with significant out of pocket responsibilities. This is not just for people with low income that is having an issue.
So, for me, when I start having these conversations with people, it’s really having them understand they are probably part of the 80 percent of the population that needs help with this.
Right. It’s understandable. Now, let’s talk about treatment choices. Insurance is complicated. We mentioned Medicare. Medicare Part B might help infuse therapies and we might have supplemental insurance that help kick in there and Medicare Part D, if you’re on Medicare, would be covering oral therapies and we mentioned about what the high co-pays and also sort of that catastrophic level you may have to meet for these expensive medications at the beginning of the year.
So, is part of the discussion with your doctor whether infused therapies, where you’d have to come to the clinic, might be paid for in a better way for you than the oral therapies and you have to judge what works in your situation?
Yeah. That’s where the financial navigator would really come into play here that understands those systems and then be able to have an articulate conversation with the oncologist to make sure that we don’t want to harm the patient in the process to try and reduce the cost if the patient isn’t getting as good enough care as what they need.
As long as there’s no harm in changing the treatment modality, yes, then we would go after that. Before we would do something like—for example, in Medicare Part D, there is a program out there called low-income subsidies. It’s administered through the Social Security Administration. So, approximately 30 percent of all Medicare beneficiaries qualify for this program.
It is estimated that approximately half of that population are actually enrolled, which means there is a significant amount of people that qualify for this program who are not enrolled. If these individuals qualify for low-income subsidy, then when they first fill a $10,000 medication, the co-pay is a little over $2,000, and then it’s in the castoff recoveries, now they’re paying $500 every single month for the rest of the year.
Well, if they qualify for low-income subsidy the first time they fill it, it’s in the $8 range that they have to pay for the medication and then the rest of the year, the product is free.
So, this is where the advocate, the financial navigator or social worker really needs to have expertise in these systems to enroll patients into this because then there’s no need for changing treatment and trying to go down that path. We can fix this problem—or utilizing foundations out there if there’s one open to help lessen the burden of the financial consequences.
Okay. So, for our leukemia audience, I just want to advise what I’ve been learning from Dan and maybe we could emphasize some points, Dan—first of all, ask at your clinic or hospital is there a social worker, or has someone actually called the financial navigator who can look at your situation, your treatment plan that’s being recommended by your doctor and assistance programs? As Dan has alluded to, that may come into play. So, Dan, that’s the first thing is speak up, right?
Right. Then if the answer is, “No, we don’t have someone that can do this,” then I think complaining that is very appropriate. Obviously, you want to be polite in your complaints. But financial toxicity or financial distress statistically is in the top three stressors of all oncology patients.
There’s one research study out there that showed that people are more concerned about the financial obligation than they were dying from the disease. So, there’s a high stressor. Oncology providers really need to start investing into having trained staff in this role that can help mitigate this problem.
With me is the man who deals with—okay. All right. We’re gonna continue now. I want to mention thanks to Dan Sherman for helping us. So, there are other organizations that can help you. First of all, we’re increasingly discussing this on patientpower.info.
Leukemia & Lymphoma Society in the US has various funds that can help and counselors who can help with that as well. They have a first connection program, of course, peer-to-peer support. Patient Empowerment Network is another resource.
There’s a group out of Massachusetts called NeedyMeds. They help people get the drugs, particularly the oral medicines you need and deserve. I think NeedyMeds is another group. Aimed Alliance is a group that we at Patient Power are partnered with talking about some of these policies as well.
What’s the appeal process if your insurance company says, “Uh-uh. We’re not gonna pay for that.” How do you work with them and maybe you’ll need some help with your doctor or nurse to file some paper or whatever. But how do you do that?
I think Dr. Sharman alluded to that even with—he was talking about acalabrutinib (Calquence) earlier. Even though it’s not approved yet related to the FDA, it’s part of the NCCN guidelines, and typically then an insurance company would pay for it. That would be another one.
The Lazarex Cancer Foundation—and there’s an interview with Dana Dornsife on our website, a wealthy woman from the Bay Area, had a family member affected by cancer. She and her family started a foundation to help people be in clinical trials. Jeanne mentioned about not everything is covered in a clinical trial. Do you have certain support you need?
Then there’s a group called the Patient Advocate Foundation and, Jay, who you’re going to meet in a second, knows that group and another—there’s another patient—yeah. There’s another group. There are a number of them with similar names that can help you.
Sometimes if you call the drug company for the drug you’re taking, they will also have nurses and other counselors who can direct you to foundations or assistance programs they have. They are prohibited from helping you directly if you’re on Medicare, but they may refer you to one of these nonprofit foundations that many companies support.
Okay? So, if you have questions about that, we’ll talk about that more, but let’s go on and meet some people also who are living with it and then we’re going to get into our whole Q&A. Again, as Esther said, [email protected] Esther told me we got a zillion questions already. Think about your questions in the room. We’re gonna run around with microphones. Okay.
I’m gonna start over there with Jay, who’s sitting next to his doctor. So, Jay is next to Jeff Sharman and Alice. These are partners in this journey. So, Jay, how were you diagnosed? How did it happen?
I had an old guy knee injury playing pickup basketball. When they went in to clean it up, they asked me about—actually, they said, “Have you had an infection recently? Your white blood count is up.” The surgeon who was a friend of mine said, “This is what I think you have. I’m gonna set you up with an oncologist.”
All right. You kind of are matter of fact about it, but when somebody tells you you have cancer…
…well, first of all, they told me I had CLL, which I distinguish from cancer. I’ve never used the word cancer about myself. But I just thought—again, like we’ve talked about today, I didn’t know that much about it. So, I think the first thing in my mind was let’s go find out a little bit more about what this is. The oncologist said to me, “You may not need treatment for quite a while.” I took him at his word.
Okay. Now, you have grown children, a couple of daughters?
Two daughters, yeah, mid-30s.
Now, you’ve had—it wasn’t a straight line in your CLL treatment. You’ve been pretty sick, hospitalized some of the time, right?
Well, I’ve been hospitalized for ancillary things. I had a collapsed lung and appendicitis. Who knows whether those were CLL-related or not?
Okay. But your daughter, one of your daughters became especially concerned and flew home from where?
She lived in New Zealand, and there was a period of time—we don’t need to go through my whole history, but I was quite ill. She flew home from New Zealand. They thought they were gonna try to get me into a stem cell transplant, which in my opinion, fortunately, didn’t happen. But she came home. She was here for three months and allowed my wife to go back to work and kind of took me to appointments. She was invaluable, yeah.
All right. And you changed doctors along the way.
I did change doctors along the way. I had a blip in the middle. I had a very good community oncologist. At the time, FCR, like with you, was the only option. That failed for me. I didn’t get to 17 years. I got under two.
Then I think I made an error in terms of where I went next. I was prescribed bendamustine (Treanda) and rituximab (Rituxan), which I’m sure is a great drug for many people. It almost killed me. It was a really bad combination. Then I fortunately found Jeanne and Dr. Sharman, and they were able to get me back in the right direction.
You were in a trial.
I was in a couple of trials. In 2007, I did a clinical trial in Portland here for a vaccine. I guess it’s kind of a lesson about the business that’s been talked about. We were kind of rolling along and the company went out of business. They shut down the trial and turned out the lights in 24 hours. The FDA said, “You’re gonna have to start this over again and prove to us it works.” I think every investor in that company went the other way.
As an aside, I’ve said this to Dr. Sharman and Jeanne. A regret of mine was that nobody ever tracked us. There were 20 people in this trial. What happened? Did it have some long-term effect? No one knows. I did a trial with Dr. Sharman right after we joined him. I will testify he doesn’t lie. Two months in, he said, “I have to take you off of this.” We were heartbroken. We thought this was gonna be the solution.
But there’s good news. That is now you’re on an approved therapy?
There was a third trial—I’m going too long here—of GS-9973. I think from my perspective, one of the reasons they’re going to trial is I had four-and-a-half great years on that drug. Now, I’m on a ibrutinib (Imbruvica) and that’s, from a disease standpoint, it’s been a great drug. I have had some of these illness side effects.
Let me ask Jeff Sharman a question since we have your doctor with us. So, I was getting sinus infections and even had pneumonia a couple of times. We understand our immune system with various testaments may not be totally intact. He was telling me he started the same thing I’m doing, IVIG or immunoglobulin monthly. So, you told me last night, Jay, you were telling me you’re doing really well now.
Doing better, yes.
So, sometimes that comes into play, some kind of supportive care, right?
So, CLL is cancer of the cells that makes antibodies. Then we give you various treatments to kill those cells. So, whether it’s the disease-causing abnormalities in the immune function or the therapies over time, there are some that are easier on the immune system, some that are harder. As you mentioned, fludarabine (Fludara) is very difficult.
So, immunologic consequences are a big part of the disease. We can measure individuals’ antibody levels. It’s one piece of the immune system. It is not at all the whole story of the immune system. But for those patients who are getting recurrent infections and have low antibody levels, it can be a very useful adjunct to such patients. We try not to do it if we can avoid it because it’s…
It’s expensive. It’s an infusion every four to six to eight weeks or so, depending on things. But for some patients who are deficient in their antibody levels and are getting recurrent infections, it can be profoundly helpful. Patients who just come into a clinic and say, “It’s been six months since I’ve been free from a cold,” then you give them their first dose and within a few days, they’re like, “Oh, my gosh, I’m better.” It can be helpful.
All right. Can the microphone go over to your better half here, Alice? Alice, you’ve made—we’ve talked about earlier—you’ve really become a student of this. So, what’s been your role as a care partner in supporting Jay?
You probably should ask Dr. Sharman that question too. Jay gets a little resentful when we go see Dr. Sharman and the conversation is between the two of us, and we just leave Jay out entirely.
So, I think I started slowly with some websites. You just Google CLL, and there are lots of places on the Internet, probably a lot more now than when we first started in 2002. But I call myself an academic, because I taught in a community college for 18 years. So, the research part of it came naturally to me. I feel empowered by—your whole slogan is information is power. I firmly believe that.
So, I’m always—I read every single day, I read about CLL, every day. And I can do that without getting overwhelmed by—I can sort of keep the emotional part down and just the information source. If there’s something that I think Jay should read, I forward it to him so he doesn’t have to go through all that stuff.
But Alice, some people that might be overwhelming or confusing.
Absolutely. Yeah. I don't know. What can I say?
Okay. You’re at one end of the scale.
So, since you’re studying all this—and what we were hopefully underscoring earlier—are you hopeful for your husband?
Oh, absolutely. That’s partly because of what I researched myself, but it’s also partly because of Dr. Sharman because every time we go see him, literally every time he’ll say, “You’re doing great, but we’ve got this, this, and this down the line. If this doesn’t work, then we’ve got these three other possible therapies for you.” So, I don’t think we worry much about if ibrutinib fails, what’s next. Dr. Sharma will tell us. I loved his information—what was it?
Judgement is anxiety.
That’s so true.
So, how do you—since you have these grown daughters, one came back from New Zealand—how do you handle it within the family? They may be asking you, “How’s dad doing? How’s dad really doing?”
All the time.
How do you—my daughter is involved in this program. She’s very involved, but we have two other kids. I know there’s back channel communication. So, how do you do that to calm people? If you’re getting calmer, they maybe don’t know as much as you.
Well, one of our daughters teaches anatomy in a medical school. So, she’s well-informed and understands all the terminology. And the other daughter is the one who came from New Zealand. She’s the one—they keep track of when his appointments are with Dr. Sharman, when he’s getting his IVIG. They know all of this stuff. So, within an hour after a scheduled appointment, I’m getting texts from them saying, “What happened at Dr. Sharman’s office? How’s dad? What’s going on?”
So, in our family, it’s just very open. When we started, when we first got the diagnosis, Jay didn’t want to tell the girls and certainly didn’t want to tell anybody else. I said, “A, you have to tell the girls, because they’ll kill you if they find out later and find out that you’ve known for five years and didn’t tell them. They’ll kill you.” I said, “Maybe you don’t have to tell anybody, but I have to have people to talk to.”
So, I had to have a network of friends that I could share stuff with even though Jay didn’t want to. He allowed me to do that.
Dr. Menashe, I’ve got a question for you. So, your patient comes in for a follow-up visit and maybe with family members. There’s a blood test. You’re looking over that and they see a little change and it freaks us out. I’ve heard doctors say let’s look at the trend. So, is that part of your discussion with patients and family members to look at the big picture?
Well, absolutely. Look at the big picture. I think getting a computer screen in the examining room has had a lot of negative consequences for doctors and patients, and the screen is up in our office. The labs are for minimal change in an irrelevant lab, it is reddened. So, there is a lot of wasted time and anxiety for patients to go through that. It all comes down to education and all the information, some of it we don’t need to get, but we get anyway that we have to deal with.