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Financial Resources for CLL-Related Expenses

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Published on August 20, 2018

Patient advocate and host Jeff Folloder addresses the elephant in the room—the overwhelming expense of managing chronic lymphocytic leukemia (CLL), even for those with insurance. Why do necessary treatments come at such a high cost? Where can patients find financial assistance? A CLL expert panel including Dr. Nicole Lamanna, Dr. Michael Keating, Dr. Jackie Broadway-Duren and Purva Lad help patients understand CLL-related costs, discuss why modern medicines are so expensive and share resources for support to provide financial relief. Watch now to find out more.

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences, Inc.,Pharmacyclics LLC and TG Therapeutics. It is produced by Patient Power in collaboration with The University of Texas MD Anderson Cancer Center.



CLL Global Research Foundation The University of Texas MD Anderson Cancer Center


The University of Texas MD Anderson Cancer Center

Transcript | Financial Resources for CLL-Related Expenses

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.

Jeff Folloder:

My goal is to live well. And, if there are things that I can do to improve my lifestyle, to improve my ability to live well, I’m gonna double down, and absolutely do it. But, there is a rather large elephant in this room right now, and it’s something that I know upsets Dr. Keating on a regular basis, this stuff is expensive. CLL is not a cheap chronic condition to manage.

And, we all have different levels of insurance programs, some of us are on private insurance, some of us are on Medicare, Medicaid, good plans, bad plans. Folks, some of these pills are $10, $15,000 a month. How do we deal with the cost of this stuff? Dr. K, any thoughts?

Dr. Lamanna:              

And, should we time him?

Jeff Folloder:               

And, go!

Dr. Keating:                 

Yeah, they’re usually bad thoughts, because we’re all so happy that ibrutinib (Imbruvica) came along, we were all so very happy for chronic myeloid leukemia, when imatinib (Gleevec) came along, etc., and it transformed. But, it transformed into a debt that wasn’t just, you finish it, and you’re done. The whole thing was that it was going to go on and on and on.

And, so many of us have been brought up in the era that was relying on Medicare to cover their costs, but you know, the donut hole is variable. But, if you have a 20 percent donut hole, and you don’t have some alternate way to get support, it’ll be 20 percent of 14,000 to $140,000 a year.  So, that’ll be 28 grand, and it’s not done. We had another year of the same. Now, there are the support groups, that have come along, the CAR T-cell therapy, one of the things that they’ve been doing with children is, we’ll do the CAR therapy for you, and if it works, you pay us, and if it doesn’t work, we don’t charge you.

And, it’s like, lawyers, and contingency representation, etc. But, it’s all these fake ways of us getting around the fact that these things are just inordinately expensive. Part of that is because they’re expensive to make. Part of it is that the regulations of conducting clinical trials are phenomenal, so that Jackie spends a significant chunk of her day doing peer-to-peer consults, to see if a patient can get access to a particular drug, And, patients have got no clue how to do it, because it took Jackie a long time to figure out the most effective way for her to do it, And, each insurance plan is different.

So, there is now a big push for us to say, can we actually get rid of all the disease in a shorter period of time, so that the thought is that we can use things like ibrutinib, to get the amount of disease from there to there. And then, we can use other things, to see if we can mop up and get rid of it, and some people, it may never come back. And then, some people, when it comes back, well, we’ll just have to deal with that. But, it’s something that’s a curse at the present time, and we did this experiment to say that, okay, I thought that  you didn’t need to take a full dose of ibrutinib. So, we did this study, that you can do three a day for a month, and then two a day for a month, and then one a day for a month.

And, the effect of blocking the enzyme was the same. So, what’s come out now is that they have 420 milligrams, that’s a full dose, or a 560, for lymphomas. 560, 420, 280, 140, and 70. And, you would think that if you have a 70, that’s gonna be much cheaper than getting a 560. But, the company is going to charge everyone the same amount per day. And, you can’t chop these pills up, and say, okay, I’ll get the 560, and get it in eighths. And, etc. And, so, now, we’re very, very happy that we have these exciting drugs, but our society hasn’t figured out how to deal with it. 

The United States is the only country that Medicare is our version of social services for health, cannot by law negotiate price with companies. So, what happens is, Canadians will say, nah, they’re not gonna pay that much. And, the company would rather get something rather than nothing, so they drop the price down. And, in different countries, over in Australia, I was stunned, that they said that this is so good that we’ll cover it for everyone. And, but, I think—Dr. Jain, who is one of our rising staff physicians, did an analysis, and the cost of looking after CLL patients before ibrutinib came along.

Was calculated to be $1.1 billion. And, in the next five years, they calculated, it was going to be $6.2 billion. So, that means if there’s a fixed amount of government support for health, you’re gonna have to take that money away from somewhere else, and no one wants to do that. So, I can’t even recommend someplace that you can read up about it. Because it changes every week, so that the things that we learn to do when we try to do the next week, you just don’t get the same answer, that’s very, very frustrating.  

Jeff Folloder:               

Just like there are resources available for symptomatic relief, for mental health issues, there are financial resources available. How do CLL patients find out about those things?

Do they have to Google it themselves, or is it something that you can ask your caregiver?

Purva Lad:                   

There are multiple places that you can look for these resources. Here at MD Anderson, our department keeps a list specifically for our hematology patients, the leukemias and lymphomas, and it has a variety of things on there. Because what we have to remember is, like Dr. Keating said, we don’t have control over the costs of these medications, and how much they’re going to be or not going to be, and what coverage we have or don’t have. But, there are other areas of your life that are going to be financially impacted by your care, that you do have more control over, and that you can plan for. Such as, traveling back and forth.

So, Leukemia & Lymphoma Society is actually one of the organizations that has a travel assistance program, they also have a copay assistance program. Any of these resources that you’re looking for. Our department, the social work department here, or at any other hospital could provide you with any of those.

You could easily go onto major websites, like the American Cancer Society, Leukemia & Lymphoma Society, and search the term, just finances, and they will give you a list of programs available. Many of these are not based on income, that’s the one thing that I hear a lot of my patients say, is oh, well, I don’t make enough to cover my expenses, but I make too much to get any assistance from other places. And, it’s not always income based. A lot of these programs are just based off of the fact that you are a patient that’s going through cancer treatment, and they realize that you need this support. 

Dr. Broadway-Duren:

In addition, many of the pharmaceutical companies that manufacture these drugs have patient assistance programs. And, generally, the providers are well aware of those. So, you can always ask someone on your team, but the pharmacies also are another great resource for patient assistance programs, as well. 

Purva Lad:                   

If you’re a patient here, the pharmacy has pharmacy resource specialists, and their sole role is to help look into these programs for you.

So, you can always ask for a pharmacy resource specialist, and they will help do the legwork, to find if there are programs that will cover the cost of the specific medication that you may need.

Dr. Lamanna:              

So, I just want to bring up that, obviously, for those of us who really just do CLL, most of us have ways where we work solely, that when we’re thinking about providing one of these new medications, outside of the context of a clinical trial, that our team does this for you. So, we essentially find out what this is, so I don’t want you to think the burden is just on you. We find out what this medication would cost, what your copay is, what actually, most people, if they need a scholarship foundation to help benefit or offset those costs, so we know that their copay may be only $20 or $50 a month, we actually—our team does this for you, and then we sit down. So, I will never give a prescription to start ibrutinib without knowing what the patient is going to pay.

So, we do this ahead of time, and then we sit and talk about whether this is something that’s doable, not doable, or what the next avenues are. So, I don’t want anybody to—yes, what I guess Michael’s trying to say is, this is certainly a problem, and it’s not unique to CLL, to cancer care in general, and obviously, hopefully, we’ll work out avenues, and you’ll hear, lots of us might be trying to talk to people in the government level, about how ways to reduce the medical expenses that we see, or what we’re concerned about as physicians, who are doing these clinical trials, and as we’re finding new therapies, the costs of these therapies, how we can advocate for you all. So, certainly, we’d love you all to be a part of that advocacy. 

But, certainly don’t think that there’s not hope of us trying to get these drugs for you. 

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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