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

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Topics include: Treatment

Patient Power’s Andrew Schorr is joined by CLL experts to discuss access issues for patients. Dr. Gwen L. Nichols and Dr. Larry Saltzman of The Leukemia & Lymphoma Society (LLS), Hildy Dillon from Cancer Support Community, and Dr. Kathleen Toomy of Regional Cancer Care Associates each share insights on to how patients can navigate access issues. They deep dive into conversation regarding resources available to patients and families, typical issues that patients face, and how patients can help lead the way for new treatment options. 

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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:

Hello and welcome to Patient Power, I’m Andrew Schorr. We’re on location at the American Society of Hematology meeting in San Diego. So, this is more than 20,000 people, really the leading edge of investigation, research, presentations, new information about testing and treatment for blood-related conditions, and, of course, blood-related cancers.

And I have a wonderful panel with us as we discuss: really, how do you get access to what’s changing in this whole hematology field? Because it’s one thing if somebody invents it, but if you can’t get it, so what? Right? So, we’re gonna discuss that, and I’ll let them introduce themselves. So, first of all, Dr. Gwen Nichols, your title?

Dr. Nichols:      

I’m the Chief Medical Officer at The Leukemia & Lymphoma Society.

Andrew Schorr:

Right, and you’ve been a hematologist/oncologist for quite a while.

Dr. Nichols:      

Yeah, we won’t say how long.

Andrew Schorr:

Next to you is Dr. Larry Saltzman, but a good friend who’s also a patient, Larry, and with the LLS.

Dr. Saltzman:   

Yes, I’m an Executive Research Director with The Leukemia & Lymphoma Society. And I am also a CLL patient going on nine years now. I went through three-and-a-half years of the dreaded “wait and watch” or “wait and worry.” and then several treatments, two clinical trials, and I’m now in remission on two oral targeted drugs.

Andrew Schorr:

Really leading edge of medicine.

Dr. Saltzman:   

Yes.

Andrew Schorr:

Okay. And then, Hildy Dillon who we’ve known for many years, and you’re with the Cancer Support Community, what’s your role there?

Hildy Dillon:     

Yes, I’m Vice President of Education and Support Programs for the Cancer Support Community.

Andrew Schorr:

Okay, and each of you—the LLS and the Cancer Support Community—have people who can help you around the country. Okay, that’s great. And then, also, let’s face it, not everybody goes to a big academic medical center—you used to be at Columbia, and Memorial Sloan Kettering, and I went to MD Anderson—the big university centers, most people do not get treatment at these places, they go to very devoted community oncologists.

And so, joining is Dr. Kathleen Toomy, and you’re from Somerville, New Jersey?

Dr. Toomy:      

So, I’m the Medical Director of the Steeplechase Cancer Center. and I mostly see breast cancer patients, but I’m a general oncologist, so I see patients with everything.

Andrew Schorr:

As we say, “all comers,” and how long have you been in the oncology field?

Dr. Toomy:      

So, over 30—over 30 years.

Andrew Schorr:

So, we’re talking about seeing thousands and thousands of patients, of course.

Dr. Toomy:

Well, I think I see the forest for the trees now because I have patients that have—I've had for 30 years, so it's wonderful.

Andrew Schorr:

Well, that’s good news! So, I wanna start with you, Dr. Toomy, 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. Toomy:      

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 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. Toomy:      

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

Andrew Schorr:

Hmm, right.

Dr. Toomy:      

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. Toomy:      

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, et cetera? 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 $1,800.00 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 $20,000.00 a year to keep the drugs flowing. So, there are significant cost issues, not only with testing but also with the drugs themselves.

Andrew Schorr:

For sure. So, Hildy, the Cancer Support Community has really helped people a lot, not just with the access issues, but also coping just with the stress.

Hildy Dillon:     

Right.

Andrew Schorr:

And I think Dr. Toomey was referring to the stress of her patients. You wanna—you’ve been given this terrifying diagnosis of cancer, there’s a promise of modern medicine helping you, and you’re trying to say, “Well, how can you cope with this in your life?” The treatments and the affordability, right?

Hildy Dillon:     

Right.

Andrew Schorr:

And you all are very devoted to helping people with that.

Hildy Dillon:     

Yeah, so the—at the Cancer Support Community through our affiliates and also through our helpline, we do distress screening. And the reason for that is because whether you’re just initially diagnosed, or you’ve been living with your disease for many years, the distress that goes along with this diagnosis—for the patient and the caregiver—does impact your access to therapies, and also adherence, adherence to therapies.

Andrew Schorr:

Sure. Financial toxicity.

Hildy Dillon:     

Yeah, yeah. And what we heard here about patients making really some dreadful choices in their lives to be able to afford their therapies, we all hear this all the time. And the most common call that we have—both in our community affiliates and also through our national helpline—is people that need help with financial navigation. When you’re diagnosed, I always say that when we wanna buy a car in America, or you wanna buy a home in America, you research, and because you know what you can afford per month.

When you're diagnosed with a devastating disease, or a life-threatening disease, there isn't anybody who can tell you, or who will tell you what this is going to cost you per month in the long run. And it could be the difference between a meal on your table, or a home, shelter; people just—$20,000.00 a year is a lot of money to people that…

Andrew Schorr:

To anybody!

Dr. Saltzman:   

To anybody!

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Page last updated on January 18, 2019