Access to Treatment and Sophisticated Testing: What Barriers Do Patients Face?

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Topics include: Living With Chronic Lymphocytic Leukemia

While chronic lymphocytic leukemia (CLL) treatment research continues to advance, many patients still have difficulty accessing the necessary care because of high costs. How does the expense of CLL care impact patient outcomes? A panel of experts, including Dr. Gwen Nichols, Dr. Kathleen Toomey and Larry Saltzman, discuss the economic hurdles families face and the effects of financial toxicity on those living with CLL.

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:              

So, I wanna start with you, Dr. Toomey, so you’re here at this conference, and you continue to hear and learn about the leading edge of medicine, really, and you must be just so thankful that it’s changing and improving.

But you also have people back home where it’s not always accessible to them, you have concerns about that, tell us about that.

Dr. Toomey:    

So, I think almost for the first time—this past week, actually—I had two patients: one who’s looking forward to his retirement in three years and telling me that in three years the medicine he’s on—he has chronic myelogenous leukemia—that it will cost him $1,000.00 a month, and he’s not sure how he’s going to afford it, and he’s looking ahead to what he’s gonna have to do in three years from now. He has four sons and he says, “My sons can’t help me,” and I said, “Well, you know, you might have to say them, ‘Each of you give me $250.00 a month to keep Dad alive,’” the kind of questions and things that people have to think about and go through. I have a second patient—she happens to have lung cancer—but she is a retired nurse.

And there is a newer medication out there—she has something called an EGFR mutation which means there’s an oral pill she can take—and she’s putting it off until after the first of the year; she is retired, she is on Medicare because of deductibles and the beginning of the year. So, it’s – and that was really the first time that I had two patients in the same week talk to me about real concrete plans. In the past, we’ve tried to help people, and look at foundations, and get our billing department involved, but for a community oncologist we don’t have a financial navigator, we don’t have an in-house social worker.

I mean, we rely on people like Leukemia Lymphoma Society and then the Cancer Support Community to help our patients navigate, something that I see coming, just looming larger and larger.

Andrew Schorr:              

Okay, and you’ve probably had cases where given the cost of care people have had to get second mortgages on their house, or reverse mortgages on their house, just really be put in a financial strait.

Dr. Toomey:    

Well, the thing that I’ve heard from patients is deciding whether to eat or get their medicine.

Andrew Schorr:              

Hmm, right.

Dr. Toomey:    

So, it’s even—I don’t think that oncologists even know…what financial straits our patients are in. We know the ones of the lower socioeconomic groups that might be having problems, and we probably give them more attention than we give to the people in the middle.

Andrew Schorr:              

Mm-hmm, mm-hmm.

Dr. Toomey:    

That’s why I’m starting to worry about the people in the middle!

Andrew Schorr:              

Right, right. And Gwen, you’ve heard like with CML, I know as there were oral therapies developed that were breakthrough...

Dr. Nichols:         

Yes.

Andrew Schorr:              

...in changing lives. There were people who were cutting their pills.

Dr. Nichols:         

We’ve done a number of studies looking at this, and I think we’ll have several that will be published, and one that’s at this meeting talking about what people do to be able to continue to take the medicine.

And oftentimes, they are making either personal decisions about giving up other things in order to afford the medicine, or taking the medicine improperly.

Andrew Schorr:              

Yeah, changing the dose!

Dr. Nichols:         

Changing the dose, skipping the pills, waiting three months—and the efficacy of these medicines—particularly CML is a perfect example—can be dramatically different if it’s not taken in the proper dosage because that’s how we know it works. A lot also, rides on us pushing the pharmaceutical companies to do studies of drug holidays and stopping drugs early. And I think that that’s—there’s some data finally at this conference about: can you stop this medicine at a point of minimal disease?

And I think we’re learning finally that isn’t in the drug companies’ financial interest, right? They want to continue, this is a business.

Andrew Schorr:              

But it isn’t the...

Dr. Nichols:         

...but it’s in the interest of the patients, and I think they are finally seeing that this is the right thing to do.

Andrew Schorr:              

Okay, you mentioned about treatment but, Larry, you know so well too that we’re looking at: are treatments working, can you stop? And there’s this term that’s come up now: testing for “minimal residual disease”, or even ahead of that, “what version”, like what version of CLL do you have, what version of CLL do I have genomically, right? Or what deletions, et cetera? Are we in a different type of CLL, you than me, etcetera? These tests are expensive.

Dr. Saltzman:        

Well, the tests are expensive; frankly, I just had a measurable residual disease test done on my bone marrow. And not to bang on my insurance company, but the $1,800 cost wasn’t covered because the test is approved for ALL, as an example, but not CLL; so this was felt to be an experimental test and we’re still on appeal to see if we can get it covered.

And with regard to the cost of medications—not to speak too personally—but luckily, I made it to Medicare and on the drugs I’m taking, we went through the Medicare Part D analysis of what my co-payments would be, and on an annual basis it would be $20,000 a year to keep the drugs flowing. So, there are significant cost issues, not only with testing but also with the drugs themselves.

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