Accessing Financial Help for CLL Treatment Costs

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Topics include: Treatments and Understanding

As patients, how can you deal with CLL treatment costs that can be a source of stress and anxiety? Licensed clinical social worker Susan Ash-Lee shares tools and resources to help patients lift the financial burden of medical costs. Dr. William Wierda and Dr. John Burke also address why effective medications are made less accessible by skyrocketing prices and whether they feel the system will change in the future. Watch for their expert opinions on this important CLL treatment issue.

This program was made possible by Pharmacyclics LLC and Janssen Biotech, Inc. Produced in partnership with Rocky Mountain Cancer Centers.

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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:

One of the things that concerns cancer patients more than anything else is how am I going to pay for this? When a patient comes to you with that particular anxiety, what type of resources do you point them to? 

Susan Ash-Lee:  

At most cancer centers, there’s a range of folks prepared to help you with this as well, from patient financial counselors to the social work team. And so we are looking at what are you most concerned about. Do you even understand what will be your responsibility after your insurance pays for treatment? So sometimes it’s just getting clear on what your responsibility will be, how it’s impacting your work. Do you have disability through work? 

And so we’re looking at all of that and then we’re pulling in the appropriate team member, or perhaps The Leukemia & Lymphoma Society or Cancer Care to look at what are the other financial supports that are available to you and your family.

Jeff Folloder:     

You mentioned LLS. There’s also Patient Advocate Foundation is another resource. When a patient is on these wonderful pills, I don't have to do chemo, I don't have to do IV stuff. I can take a couple of pills each day, and I’m gonna be okay. And those pills are $14,000 a month and the copay, after insurance has done their thing, still winds up being $2,100 a month. This is a big hurdle for a lot of people. What’s going on there? How do we get those people help?

Susan Ash-Lee:  

This is really where we look at where you are financially and what your household income looks like.

Then we know who we’re going to link you to, either through a pharmaceutical company, or Patient Advocate Foundation or some other copay assistance program. And so sometimes we have to ask particularly nosy financial questions that are hard for those of us to reveal our finances, yes. 

Jeff Folloder:     

So along those lines, we’re talking about expensive medications. There were at least two people who have taken me off to the side and have asked me to ask these two gentlemen a question that I don’t know if it can be answered adequately. Why are the CLL medicines, the new ones, so damn expensive? Let’s start with you, Dr. Burke.

Dr. Burke:

I think probably several reasons. One is as we’ve talked about, it costs a lot to develop these drugs. And so the pharmaceutical companies who have paid for the development want to make a profit, and so that’s reason number one.

Number two is that they can charge whatever they want. We don’t have a system in the U.S. that regulates what a pharmaceutical company can charge for a drug. So that’s the second point. A third point is that our FDA, unlike regulatory agencies in other countries, does not have any say on price and doesn’t judge the value of a treatment relative to price. That is the FDA will review an application for a drug approval based on is the drug effective and what are the side effects, and is it therefore worth approving and will approve it. But they’re not going to consider how much does the drug cost, and is the value worth the cost.

They just approve the drug, and the price is what it is. And that’s, I believe, unlike how things are necessarily done, say in England, where their regulatory agencies do have a say on whether they’re going to approve the drug based on is it worth the cost. And so that’s our system in the U.S., and none of us in this room is in charge of that system; our Congress is. So I think there are a lot of factors, and those are some of them that are determining why every single new cancer treatment that has gotten approved in the last five years pretty much costs ten grand a month or more.

Jeff Folloder:     

It’s a staggering number. Dr. Wierda.

Dr. Wierda:          

Yes, and it’s basically what the market will bear. That’s how the prices are set. I don’t know that they go through the exercise of saying okay, for drug X it took us this much to develop it. we want to make this much profit; we’re going to price it at this. It’s more okay, what will the market bear, and they’reall priced similarly.

Drugs for CML are priced—chronic myeloid leukemia, the oral ones are priced similar to CLL. I’m optimistic that at some point this system will change. It’s not a system that will be—it’s not a sustainable system so I think things will change eventually.

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 January 10, 2018