Financial Toxicity: How Can I Minimize the Cost of My MPN Care?

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High cost of modern myeloproliferative neoplasm (MPN) medicines can weigh heavily on patients and make treatment inaccessible to some. How can financial toxicity be minimized for patients and families? Where can people go for financial assistance? MPN expert Dr. Naval Daver, from The University of Texas MD Anderson Cancer Center, and licensed clinical oncology social worker Bryn Dunham, from the University of Colorado Anschutz Medical Campus, discuss ways to help patients lift the financial burden of MPN care. Can participating in a clinical trial help curtail costs? Tune in to find out more.

Sponsored by Incyte Corporation. Produced in association with The University of Colorado Anschutz Medical Campus.

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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.

Andrew Schorr:

Now, I wanna talk, Bryn, about financial issues. We talked about it earlier with Nelson. That weighed heavily on him and he thought he was, quite frankly, headed for the grave, because he didn’t feel that the treatment he needed was accessible to him. And that’s very real today with the cost of modern therapies. But there are programs. Talk about, first of all, the worry about financial issues for access to the medicine you need, and the assistance you can look for to try to get it. 

Bryn Dunham:

Sure. Financial toxicity is a term that we’re now starting to use on a much more regular basis with an oncology treatment. Part of the reason is we have great medicines, great physicians, great providers, and people are living far beyond where they ever were, even 10 years ago, people are surviving cancer and other diagnosis. So, it’s a huge issue. 

There’s a lot of research going on about how to minimize financial toxicity for families. We talk about medications and obtaining medications, here at CU we have a real multidisciplinary, and real dynamic program, where we utilize our pharmacists, and our social workers, and our providers, to find those drug companies that can assist with providing medications at a discounted cost or for no cost at all. 

We also utilize The Leukemia & Lymphoma Society frequently. They have some co-pay assistance programs dependent upon diagnosis. And that’s another really important partnership that we use routinely here at CU, and elsewhere also.

Andrew Schorr:

Right. So, you need to speak up. Be honest about your financial situation. There are many people, when you’re diagnosed with these conditions, and you’ve never taken charity in your life, and the whole idea of you getting any kind of assistance seems foreign to you and maybe uncomfortable. But yet, don’t you deserve the care that is right for you? 

So, I think that’s a frank discussion with an oncology social worker, or a financial navigator. And if you’re not getting all the answers, ask someone else as well. Keep asking. And you mentioned about the Leukemia & Lymphoma Society, and there are some other programs as a Patient Advocate Foundation, there’s another group called Good Days. 

I heard about one called NeedyMeds. So, there are a lot of these programs and I’ll mention one more thing about if you choose to be in a clinical trial. We have a friend from Seattle who’s in a clinical trial here at CU. And so, she has open to her, I’m not sure if she’s needed it, but somebody else might, for assistance in the airfare in coming, or lodging. 

So, there is assistance for people being in clinical trials, as well. You need to ask, “You know I’m interested in that clinical trial, but I don’t have the wherewithal to travel, or is there assistance for me to help me with the logistics?” Right? People go to MD Anderson—I went to MD Anderson in 2000 from Seattle, that’s like 2,000 miles. So, it was a long way.           

Dr. Daver:

And also, the medication itself is free. So, a lot of times, if you take six years of a particular medication, and your co-pay is $200 to $300 over time, if you’re on a trial, you can actually save a lot of money, even though you may be traveling every three to six months to the centers. So, there are a lot of advantages there.

Andrew Schorr:

Yeah. Let me point that out just financially, about a clinical trial. So, tell me if this is right. Normally, even after drugs are approved, the people who are in the trial often sort of stay in the trial, because you’re getting longer term data. And am I right that the cost of the trial medicine remains provided to them at no charge usually?         

Dr. Daver:

It depends on each trial, so, many trials will continue indefinitely, we have for example, with Ibrutinib and CLL or ruxolitinib (Jakafi) and MF patients nine, 10 years, who are on free drug supply. So yeah, it could be a huge cost savings there.

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 August 20, 2018