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How Do I Learn What’s Driving My Lung Cancer?

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Published on January 29, 2018

[Editor’s note (11/2018): Matt Ellefson passed away after a long battle with lung cancer. Matt was the epitome of what it means to live a purpose-driven life. His work has impacted thousands of people across the world.]
 

Lung cancer patient and advocate Matt Ellefson, Founder of SURVIVEiT, shares his experience and also describes how genetic testing provides a bridge to what’s next by matching a treatment that’s compatible with the located driver mutations. How can patients pay for testing? The panel also discusses cost, insurance plans, and financial resources for genetic testing. Watch now to learn more.

The Living Well with Lung Cancer series is a Patient Empowerment Network program produced by Patient Power in partnership with SURVIVEiT®. We thank Celgene, Helsinn, Novartis and Genentech for their support.

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Transcript | How Do I Learn What’s Driving My Lung Cancer?

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:

Matt, you had genomic testing. You’ve had it at different times. Some people have written in and said, “Well, what if my doctor is not willing to do that?”

Or sending it off for other analysis? So what can you tell people about that and how they can really understand what their mutational status is, and getting that analyzed by the appropriate lab? 

Matt Ellefson:   

No, especially via late stage cancer, stage III or IV, it is crucial that you get genomic testing—and not just the testing that your cancer center can provide. I mean, don’t only test for the genes that they have the ability to treat. You need a comprehensive panel. And if your doctor’s unwilling to do that, you need another doctor. It’s just that simple. You need to seek a second opinion immediately, because cancer is very complex. And the reality is, it doesn’t matter what enemy you have. You can’t find any enemy until you know what that enemy is, and it’s the same way with cancer.

Until we can pinpoint what is specifically driving our cancer, we can’t fight it effectively. So it’s extremely important to have a comprehensive full panel genomic sequencing performed so that you are provided with—first of all, you understand what is driving your cancer. And even if what is driving your cancer today doesn’t have a targetable solution, a medicine that can target that gene to stop the cancer, at least now you know what to watch for, because there are breakthroughs coming through monthly. I mean, I get emails—I sign up to listings. SURVIVEiT posts them very quickly in our newsroom, into our social media channels. That stuff is happening faster than it ever has in the history of the delivery of cancer care.

The innovative technology today is happening very quickly. So you can’t ever lose hope. You really can’t lose hope. When I was diagnosed almost eight years ago, they had one treatment—excuse me—available, a targeted therapy available for lung cancer. And now today, there are five. And it’s because I’ve been able to stay alive during that time period, I’ve been able to allow them to develop another one and another one.

Andrew Schorr:

A bridge to what’s next. A bridge to what’s next.

Matt Ellefson:   

And you can’t—you just can’t lose hope. You need to know what it is that’s driving your cancer, so you can follow that.

Andrew Schorr:

So the Lung Cancer Alliance has a program where you can call, and they have various groups that work with you to assist you in getting genomic testing, okay? And we, Matt and I, are involved in something called the Precision Medicine for Me Consortium, where we’re working now where there may be research groups that come into play that will facilitate paying for the test if you otherwise don’t have insurance. And unfortunately, that’s the mission now, to pay for testing, okay? 

So listen carefully. I hope you’ve written some of this down. And I wanted to bring up one, another thing related to insurance. Some people have fights with their insurance company in their state, not Medicare now, or maybe this insurance company or that insurance company, operating in your state. There’s a group called the AIMED Alliance—A-I-M-E-D, AIMED Alliance. It’s aimedalliance.com—where they have—it’s propelled by health insurance attorneys who will go to bat with you to make sure that you, even if you have to appeal to the state insurance commissioner, that if there have been denials, that you can appeal that and go through the process to get what is—what you deserve. 

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.