Resources for Lung Cancer Patients

Transcript:

Philippa Cheetham, MD: Team Draft—how long has it been going on for?

Chris Draft: Team Draft was started November 27, 2011, which is the day that my wife and I got married.

Philippa Cheetham, MD: So, six years in?

Chris Draft: Yes.

Philippa Cheetham, MD: Has the message changed or evolved? And where do you see Team Draft going over the next few years? What are the main areas that you want to target and what do you hope to accomplish?

Chris Draft: We’re continuing to change the face of lung cancer. It’s changing, so it is something that is constant. It’s all the time. We need to make sure you see people more consistently. You see people and get to know who they are, know their stories, know their journey, so that you can connect with them. And then, behind that, we have to make sure in the gains that we make, that we don’t apologize because we can’t get to everybody. I had a chance to talk to a doctor about lung cancer screening and he apologized to me because the screening would not have helped my wife. And I said, “You know what? I understand. Let’s go save the ones we can.”

I gave him an example: if there was a ship that was going down, and there was a boat that could only save 30 people, if you stood on the sideline and complained about the fact that you didn’t have a big enough boat to save everybody and, in the process, the ship went down, you didn’t even get a chance to save those 30 people. Or, you could go and save those 30 people. Let’s go get them. There are things that we can do right now. We have to make sure that those things happen across the board.

If we can do screening on a high-risk population, let’s go get them. Let’s go save them. If we have molecular testing where a select few can benefit, let’s go get them. If we have immunotherapy and there’s people that can benefit from it, we’re going to go get them. Then, we’re going to learn from it. We’re going to do research, and we’re going to go get some more. And then, for the survivors, we’re just going to love them. Everybody has got a different journey. Some of them are going to respond. Other ones are not. But throughout that, until they pass away, they are still here. They’re still a person. They still matter.

Philippa Cheetham, MD: One of the most rewarding parts of doing segments like CURE Connections^® is that we have had so much feedback, as a team, about the lives and the journeys that we’ve changed. You’ve already talked about the apology that you had from the doctor who felt the screening program wouldn’t benefit from your wife. I’m sure that within the last six years you’ve also had a lot of feedback where you’ve really made a huge difference by raising awareness. Individuals have come back to you and had very positive feedback, yes?

Chris Draft: Well, I’m saying it’s not bad feedback. He’s saying that it wouldn’t help my wife, but it’s more of him saying, “I wish we were further along.” And so, that means he’s fighting. So, I tell him, “Thank you.” We’re not going to move because somebody just randomly says to. We’re going to move because of people in this business. This studio makes lung cancer a priority. People, at their organizations, at their cancer centers, make lung cancer a priority. It’s every bit. You know, it’s not 1 survivor. It’s not 1 caregiver. It’s not just 1 advocate. It’s not 1 organization. It’s not 1 cancer center. It’s everybody, together, playing their part. That is what is making a difference.

Philippa Cheetham, MD: And, repetition—repetition was the message.

Chris Draft: Every day.

Philippa Cheetham, MD: Where can patients and caregivers get more information? Do you have a website?

Chris Draft: They can go to chrisdraftfamilyfoundation.org, or they can go to teamdraft.org.

Philippa Cheetham, MD: Teamdraft.org?

Chris Draft: Yes.

Philippa Cheetham, MD: And on the website, what kind of information do you have for people out there? What’s on the website?

Chris Draft: The key is to be able to soak up people’s journeys. We’ve got profiles of doctors, but the real key is to know that you’re not by yourself. There are other people out there. There are people that are standing up. There are people that are living. And just because lung cancer is there, we don’t want you to get completely sad and just lay it down. There are people who are going to fight for you every day. So, we need you to keep on going.

Philippa Cheetham, MD: So, teamdraft.org. Carly, how about the American Lung Association? They have a website. How do patients and caregivers get information from the American Lung Association?

Carly Ornstein: If you go to lung.org/lung-cancer, you will get to our hub of lung cancer resources and educational information. One new thing that we added that’s really neat is that a lung cancer navigator tool pops up when you go there. You can select from a dropdown as to where you are in your journey—if you’re newly diagnosed, or a caregiver, or are concerned about lung cancer. And then, it navigates you to the information that’s specific to meet your needs. This is important because we have a lot of information and resources on our website. This is great, but it can be overwhelming to someone. And so, that navigator will point you in the right direction. “These are the questions you need to be asking right now.” “This is what you need to know, right now, in your journey.” You can also learn more about our initiatives and how to join our support communities and get involved. So, lung.org/lung-cancer is the place to be.

Philippa Cheetham, MD: We’ve heard about 2 great resources, here. Dr. Horn, these websites need to be constantly updated with new information and new messages. Are there any other resources that you direct patients to when they are diagnosed with lung cancer? Carly has already brought up the point that there’s a huge spectrum. It’s important to be able to zone in on what’s specific to you. That is what is important for patients so they don’t get overwhelmed with information that’s not relevant to them. Is there any other information you can recommend for patients?

Leora Horn, MD, MSc: I think those are great resources. The one that I’d probably add is one that was developed at Vanderbilt. It is called mycancergenome.org. On there, you can select “lung cancer” and push “click” to read about all of the different molecular testing that we’re doing in lung cancer. Based on the gene that you have, you can learn what that means in terms of treatment and treatment options for you. It’s designed for physicians, but also for patients to know what should be tested for and what that testing means.

Philippa Cheetham, MD: Which is important, isn’t it? That patients get the right information. Dr. Google isn’t always accurate. Thank you so much, Chris, for all of your passion and energy in moving forward the message for lung cancer patients and their families through Team Draft. Carly Ornstein, it’s fantastic to hear what the American Lung Association can offer both patients and doctors. And Dr. Horn, thank you for sharing your expertise in lung cancer with us today. Thank you.

Transcript Edited for Clarity