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Mark Silverstein: A Look at Patients Fighting for Access to Treatment

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Published on October 10, 2018

Chronic lymphocytic leukemia (CLL) patient and advocate Mark Silverstein gives insight to the patient-level impact of financial toxicity and high costs of cancer care. How can CLL patients cope with the challenges that expensive treatments bring? Mark discusses the added pressures from financial distress patients often encounter, the importance of speaking up about your experience, and creating change and lifting the economic burden of CLL. 

Sponsored by AbbVie, Inc., Janssen Oncology and Pharmacyclics LLC.

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Transcript | Mark Silverstein: A Look at Patients Fighting for Access to Treatment

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:

There’s one other thing I need to ask you about where we are these days and you touched on it for Canada but I think it’s an issue everywhere. And that is about access to these newer or sometimes more expensive therapies, combinations. You had to fight about getting rituximab (Rituxan) again. And you had to sort of go to bat. So what would you say—and this is really for a worldwide audience where access is an issue. What would you tell people who are often illand their family members about speaking up and really fighting for that access?

Mark Silverstein:         

I think it’s important. I think the more voices our governments hear, I think the more power we have to effect change. It’s challenging. My wife and I, Nelia, we’ve thought about—when we had to pay for the rituximab, we thought about what happens for someone who can’t—we were lucky enough that we could sort of come up with the money. But what happens with people who can’t? 

And that was part of the reason why we started kind of advocating on it because it just didn’t seem right to us. 

It didn’t seem right that, in this particular case, it was an approved drug, it was a paid-for drug in Canada, but then there was a limit of how many times you could use it. And it just doesn’t make a lot of sense for us. And we’re hoping—I just believe that the more you push back and the more that you kind of yell out the issue, the more chance that the governments will listen to it. 

Unfortunately, these drugs are really expensive. I mean, in Canada, ibrutinib was close to $9,000.00 a month. That’s—what happens if you have to be on it for six years? That’s very—it becomes really pricey and you need to find ways to finance it. And, once again, there are all sorts of things in Canada. I’m assuming there’s things in the U.S. that you can use, insurance, etc., etc. But it’s challenging.  

So my challenge is you’re already suffering, you’re already sick, and then you have to sort of suffer through trying to figure out how to financially back something up to save your life on top of that. So the added stress—what I consider the added suffering, already on suffering of just having the disease, is really challenging. And it’s—my heart goes out to those who have more challenges with it financially because what do you do when it’s your life in the balance and you can’t afford to do something? It just seems so unreasonable. 

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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