CLL Access to Care: How Patients Can Get Access to the Latest Treatments - 2 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


CLL Access to Care: How Patients Can Get Access to the Latest Treatments

Hildy Dillon:     

…or to anyone, and we don’t plan for this in our lives. People assume that if they have insurance that they may have to pay something for their care, but they are…until you get sick you don’t know what your insurance doesn’t cover, so.

Andrew Schorr:

Kathleen, I wanna ask you, we’ve been hearing about this testing—genomic testing—to know—what subtype of a disease do you have so you get targeted therapy? You mentioned earlier lung cancer; do you have the EGFR gene? Or what is it for me with myelofibrosis, do I have JAK2 V617F? What is driving it and is there medicine for that? And then also, we were talking about minimal residual disease testing, has the therapy you’ve had worked? But often, there’s opposition by insurance companies to paying for tests—like Larry was talking about—as well as paying for treatments. You must have battles at the community level with insurance companies.

Dr. Toomy:      

So, I always take the approach that the person on the other end of the line is a human being, and I will be as nice to them as I can because I'm trying to get something for my patient, and that's usually to pay for a test. As I was coming out here, I actually have two calls for something called peer-to-peer looking to get a PET scan for a patient, looking to get a genomic test for a breast cancer patient paid for. And some of the times the physician calls me because it's another physician, and I go, "Blah, blah, blah," and they go, "That's fine, here's your number," and other times they say, "No, the NCCN guidelines do not,” and I will tell you, in general, they’re reasonable. I think what they’re doing is healthcare rationing by inconvenience. We have to set up that call and very interestingly it’s only recently that they’re now calling us.

Before on my day off—which is always my day to get caught up—I would be, “Okay, I can call them and I can hang on for a half hour, 45 minutes, or I can have a staff member hang on for an hour or whatever it is, and then put me on the phone.” So, many people probably drop off from that point of view, “Okay, we won’t do this test because your insurance company won’t pay for it.” I think there’s a lot of financial…there’s a lot of problems with literacy, financial literacy, I think you hit the nail in the head. I think that we, the physicians, are protected from knowing what financial toxicity our patients have; we don’t even know the costs of the tests that we order.

We may know, we may—some of the more common ones we may know, “Oh, okay, they’re gonna charge you $4,000 for that, and it may not get paid.” What I’ve started doing is saying to patients, “Listen, I’m ordering a PET scan on you, your insurance company may or may not agree; I will appeal for you, but in the end, we’re going to have to make a decision together about getting that test, or is there another test?”

Andrew Schorr:

Wow, this is—it’s a tough time for docs as well as for patients.

Dr. Nichols:      

Yeah, and I think there’s an education component. In medical school, we were never taught about the cost of any of what we did, because the reason we weren't taught that is that you should do what's right for the patient and not be thinking about how you ration it. And so, it's a real disconnect to now say, "You need to know each different insurance company and whether or not they will cover X, Y or Z," I mean, that just isn’t…

Hildy Dillon:     

Mm-hmm, any company offers about 10 different plans, yeah.

Dr. Nichols:      

…yeah, all different plans. I’ve been struggling with that because I can’t think of what—how we could educate our young physicians about that because it’s so complex.

Dr. Saltzman:   

Well, I hate to put oil on the fire, but there is another problem which is that—I reside in California, which is deeper into managed care than some other parts of the country, and physicians, young physicians coming into practice mostly are going into settings of groups or managed care.

And frankly, they’re reimbursed based on the revenue or not that comes in or does not come in through their clinics, or is expensed, or is expensed out of their clinics. And so, they’re starting to learn about cost but in a somewhat negative way, because it impacts their bottom line if you will. This is problematic.

Andrew Schorr:

Do you—you wanna make…?

Hildy Dillon:     

Yeah, I would just agree that it’s…what both Gwen and Larry are saying is that the—we’re at a meeting that is a global meeting, and I always look forward to ASH, because I have an opportunity to see my global advocate peers. And there’s an assumption sometimes that here in the United States that all patients have access to these innovative therapies, and it’s just not the case.

We see that those of us that are listening to patients and hearing—we generally don’t hear from people that are doing well and can manage their expenses, but we are hearing from the people—and there are many of them—that have a problem with this. I think, also, there is—what’s happened is that the field is so exciting today, especially in the blood cancer arena. As you were saying, Andy, that the whole paradigm is changing with precision medicine and that is incredibly exciting because we know that there’s more hope for patients to be living longer and longer with their disease, and hopefully have a reasonable quality of life along with that.

But quality of life is not just the outcome of your medicines, and it’s the impact of that disease on your life, on your family; and that’s where our organizations and physicians like Kathleen are so important, because we need to think about the whole person, and not just their disease.

Andrew Schorr:

Mm-hmm, okay. We’ve talked about the problem; the problem can be acute for some people. Let’s start talking about what we can do about it. And I know—so, you on your day off are making appeals calls and you have a lot—in the community oncology—or any physician—you have a lot in trying to first of all keep up with the changes: being a general oncologist, really tough. And then also, really going to bat for your patients so they get what they need and deserve, whether it’s treatment, or testing other resources. So, first of all, our hats are off to you, we really…

Dr. Toomy:      

So, when I went to the CLL lecture today and heard an international expert in CLL say he’s in the 33rd year of his training, it made me feel good.

Because that’s what medicine always has been and that’s why medicine is exciting: we’re always learning, right? Things are always—the edges of medicine are always fuzzy, we’re always moving ahead; so that’s the great part of it. The bad of it is: I cannot be an expert in anything if I’m an expert in everything, so I have to have a certain level and I have to rely on my academic partnerships, and collaborations, and we all have to work together.

I am on the board of the Cancer Support Community, I’ve used The Leukemia & Lymphoma Society, I specifically for years have been very interested in getting my patients the things that they need. I will go to any organization to ask for help for my patients, and these are two organizations that have been very helpful to my patients over the years. But what else can I tell my patients, so what other education?

And I’m a medical director of a cancer center, so I’m trying to educate my colleagues on how they can help their patients. So, for example: where do you go to get your medication? What pharmacies charge more, and what pharmacies charge less? And this is something I learned from NPR: that your mom-and-pop’s and Costco—is the only national pharmacy—that will have the lowest prices; the chains? Not at all, okay? So, I may have to tell my patients—and this—in the NPR—episode it was a woman saying that a woman was researching a drug that I give most often called Anastrozole for breast cancer, and at the end—she went to the different pharmacies and found the lowest was at the mom-and-pop. And at the end of this episode, she said, "And that woman was my mother."

So, we have to make it as personal as possible. So, I will tell my patients—and I have for a long time—“Call around, find out, ask, see what programs are available at the pharmaceutical companies.” And we have had—in the past my head biller took it upon herself to help the patients finding the foundations, finding the programs. We now have a bigger billing department, because I am in a bigger group and that's great, The more resources you can get for your patients, that's great. But finding out what is available in the community for your patients, I mean, that's what a doctor does.

Andrew Schorr:

Well, let’s talk about it. So, we have the LLS represented here and the Cancer Support Community, you’re helping people navigate and also, you’re getting calls about the stress people are under, what are some of the resources? Now, sometimes you’ve had funds that are available for people who need assistance, but sometimes the funds get used up.

Dr. Nichols:      

They run out, absolutely. And also, there is a certain financial need level that you have to hit, and unfortunately just as we were hearing, there’s a group of people who don’t hit that level of—when you look at their numbers—of financial need.

Andrew Schorr:

They don’t qualify.

Dr. Nichols:      

They don’t qualify but they still have a tremendous need. We do have some additional financial support, but more often than not we are trying to help them find company-supported assistance or other ways to navigate this because it is—it's gone way beyond just five times the poverty level. This is hitting everyone, it's not a question that…

Andrew Schorr:

…so, the costs are going up, expensive new treatments and testing, so we’re not solving it here but we’re gonna try to do as well as we can now.

So, certainly the call if you’re dealing with a blood cancer to The Leukemia & Lymphoma Society, a call to the Cancer Support Community, tell us about resources you have, Hildy.

Hildy Dillon:     

Well, we will help patients find what resources are available; so we have a pretty extensive database of national, regional, and local resources, including the co-pay foundations that are available. What’s interesting is that as we move into precision medicine we’ve been working closely with the centralized diagnostic companies, and they also are starting to offer patient-assistance…

Dr. Nichols:      

…programs.

Hildy Dillon:     

And they’re coming to us saying, “We’re so surprised people are not getting covered.”

And so, I think that—what we do is we—but I think more importantly, or equally as important is what we do is we really counsel patients and help them to articulate what their goals are for therapy and for their outcome with their disease so that we can help them navigate through all of the points that may be causing them distress. So, people may be worried that, “Well, for whatever insurance I have, I may lose it if I can’t continue working,” or “If my caregiver needs to be with me to have a stem cell transplant, or go through CAR T therapy—and that person is the one who’s insured—they might be at risk of losing their job or losing their insurance.”

Not all employers are equal in their generosity to people when they have a life-threatening illness that requires an extended hospital stay or extended therapies that may keep you out of work. So, there are things that we can do to help people manage these things.

But as Kathleen was saying before we help them to troubleshoot where the resources are within their support system, we have a program called Open to Options, which is a  shared decision tool. And it helps people to raise who is in their support system that could possibly help them; what are their deepest concerns and fears about their illness; and help them to articulate the questions that they really need to ask their doctor. Because it's not every practice that works so personally with each patient to find out what may be causing their inability to adhere to therapy.

So, we really work hard to help people to be able to articulate that and communicate better with their healthcare providers so that the healthcare provider teams can help them as well.

Dr. Nichols:      

So that they know, yeah.

Andrew Schorr:

Right, so I wanna about that—right. You mentioned as a physician people don’t always level with you, maybe they’re even embarrassed to tell you.

Dr. Nichols:

Of course!

Hildy Dillon:     

Yeah, there is a shame that goes along with—yeah.

Andrew Schorr:

Right, there’s a shame like, “Oh, my god, I’m struggling to pay for this,” or…

Dr. Nichols:      

…or your doctor won’t like to hear it or…

Andrew Schorr:

…yeah, or “They don’t have time.”

Dr. Nichols:      

Yeah, they don’t have time, yeah.

Andrew Schorr:

“I don’t wanna burden him with that because they’re trying to cure my…

Dr. Toomy:

…so, it's the insurance companies that come to us and say, "Hey, listen, this patient isn't getting their prescriptions filled, did you know that Doctor?" and the answer is, "No." We do ask our patients, "Did you miss any doses this month?" and that actually helps. When you start to ask about adherence, "Oh, maybe—" and you could tell, "Why did you miss it?” “I missed it because I don’t like the side effects,” then we can deal with that; or “I missed it because I really can’t afford it.” I think with the more expensive drugs, we know. We know immediately because either they can or they can’t afford it. You have 60 percent of all bankruptcies are medical in this country, the system is broken!

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Page last updated on January 18, 2019