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Affordability of Medication: Why Communication With Your Provider Is Essential

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Published on January 24, 2017

Financial toxicity is a big concern with cancer care today. At our recent MPN Town Meeting at City of Hope, MPN experts discuss affordability of medication and why you should be communicating with your doctor about it. Jennifer Drew, a social worker at City of Hope, explains different patient assistance programs are available to ease the financial burden.

MPN expert Dr. David Snyder explains why drug affordability is a national issue and the importance of getting involved politically to stop hikes in drug prices. Dr. Ruben Mesa shares these sentiments adds that it’s necessary to be transparent with your doctor about your financial situation in order to ensure you are receiving optimal care.

This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with City of Hope. 

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Transcript | Affordability of Medication: Why Communication With Your Provider Is Essential

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.

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:

Depending upon your insurance, there may be copay issues, there may be needs—I’m going to come to you about this and say, but I guess what we're concerned about, in cancer care today, is what I think you all refer to as "financial toxicity," right?

Dr. Snyder:           

Correct.

Andrew Schorr:                  

And so that's a concern that overlays a lot of us is, "Oh, well, great if you have this new medicine, but will it be covered? And, if it is, how much of it is covered, or do I have some expense, and can I afford it?"

So, first of all, about assistance programs. There are, Jennifer, some assistance programs, and you don't have to be broke, do you? 

Jennifer Drew:  

No, there are assistance programs, and the thing that's interesting is some of the assistance programs go in and out of funding. So keeping an eye on the landscape of which programs have which funding for which diagnosis is really critical, and it changes all the time. So there can be copay assistance programs for various organizations, and societies, and nonprofits. And we team with the NPs—they know from the perspective of the pharmaceutical companies where there might be funds available directly available from pharmaceuticals whereas we might know what grants and funds are available on a more compassionate basis, so the NPs really go hand in hand with us in that area.

Andrew Schorr:                  

Mm-hmm. David, do you have concern as you all work on trials and developing new drugs, and you talk about combination therapies? So, it could be one $10,000 a month drug plus another at least, correct? How are we going to deal? So, there's that science, but what's affordable, too.

Dr. Snyder:

Right. So that's obviously something we all deal with in this country probably more than in many other. We are certainly promoting the development of new drug therapies, and it's inevitable that a new drug comes along. It's going to be even more expensive than what was over there previously. Or, even more, it's the drug that's been there for years will now jack up its price, because the new drugs are coming along. It's a national problem, and I encourage individuals—patients, families, us, in the healthcare teams—to be involved politically, helping to promote legislation to convince our representatives at the state level, at the national level, of how serious a problem this is.

There's a proposition coming up in California to try to cap the charges of new drugs to what the government will allow for the Veterans Administration, I believe, which has a special deal. There are groups like ASH—the American Society of Hematology—Leukemia & Lymphoma Society, that are working in Washington to lobby to be sure that legislators are aware. They are aware because they are patients, they have families who are patients who are dealing with this. So it's a national issue and the term of financial toxicity is a real one, and I think that it's something that all of us really need to be part of.

Andrew Schorr:                  

Mm-hmm. Ruben, do you have any comment on it? Because the last thing we want is for people—here, why don't you take that mic, too—to be more anxious about their future—we talked about the uncertainty—if they're also worried about the financial health of their family. 

Dr. Mesa:               

Yeah, I'd say there's a couple of levels. So, one—and I definitely agree with David in terms of the overarching aspect—that the societal aspect, there's clearly an issue. Although, for the folks in this audience that have more than enough to worry about, I put that in the national debt kind of category. It's a big problem. If any of us really focus on it, we're not going to sleep, but the ability for us to really do anything about it directly is fairly limited. So I think things will evolve in that nature, but I really don't want people to stress out at that level, because there's just a lot of moving pieces there. In terms of being an individual, you're exactly correct that it's a factor.

I'm grateful that it seems many patients, with the various programs—and, sometimes, it's a bit of persistence—really can find a workable solution for getting the medicines that they need. If we find challenges, it's more common if we're really trying to try something that's really quite experimental, or unproven, or worked in one person in Uganda—more, in that nature, it becomes more difficult. But it's something I think that's really on the radar. And you're correct, if we were to look at things that would increase it that much more—let's take three expensive drugs and put them together—it certainly is a factor. It's going to have to really show that it's quite a bit better to really make that worthwhile. To some degree, there have been a variety of combination studies with ruxolitinib (Jakafi) to date, but none of them have really become a standard approach, in part, because the increment of the other drugs have not really been that dramatic. So, to really change course, and expense, and additional toxicities hasn't been worthwhile. So it's definitely a factor.

Andrew Schorr:                  

Okay. So I made this comment about cutting pills, and I think you saw it. Do you also see CML patients, or you see a few?

Dr. Snyder:           

Yes.

Andrew Schorr:                  

So that's where they came out with these medicines—imatinib (Gleevec) and some others—that just saved lives and letting people live quite well with chronic myeloid leukemia, but the drugs are expensive. And, so, some people said, "Well, if I cut my pill in half, I'll be okay, because I feel really good, and it's otherwise too expensive." This cutting pills, skipping a dose—none of it, really, you shouldn't do it. You need to be talking, because the results that they were talking about were based on people taking the dose they think you are taking. If you're not taking that dose and you're not doing as well, they don't know, right? 

Dr. Mesa:               

It's key that you are really transparent with your healthcare team in terms of what you're exactly doing. It's not our place, in any way, to judge. So, for example, as a kid, I was given a retainer, and I hated the retainer and they're like, "You're wearing your retainer every night?" And I'm like, "Oh, absolutely," and I never wore the thing. I really wasn't cheating anybody other than myself as you can clearly tell from my overbite. Likewise, with the medicine, we really need to know what you're on because, if David's in the position of saying, "Well, this person's not responding. Maybe we have to go to transplant." But the reality is they're not responding, because they're not taking the medicine, because they can't afford it, that's a dramatic change in his decision as your provider because of really not truly knowing what's going on.

So being transparent and just saying, "You know what? I can't afford this. What are the other options? Is there another solution?" as opposed to saying, "Oh, yeah, I'm taking it. I just don't need a refill this month, because I still have half the pills from last month."

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.