How Are Doctors Going to Bat for CLL Patient Access to Care?

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What can chronic lymphocytic leukemia (CLL) patients do if they can’t afford treatment? How can your healthcare team provide support during financial distress? A panel of experts, including Dr. Gwen L. Nichols, Dr. Kathleen Toomey and Hildy Dillon, discuss ways doctors can help CLL patients navigate cost and locate financial assistance resources. 

This program is sponsored through a grant from Janssen Oncology and Pharmacyclics LLC. These organizations have no editorial control. It is produced solely by Patient Power.

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Transcript

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.

Andrew Schorr:               

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. Toomey:                    

So, when I went to the CLL lecture today and heard an international expert in CLL say he’s in the 33rdyear 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 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 (Arimidex) 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 and 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 council 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.

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.

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Page last updated on September 9, 2019