Carly Ornstein and Chris Draft explain why it is important for patients to be their own advocates when managing their health. Chris highlights hurdles that patients experience when seeking appropriate care.
PUBLISHED November 06, 2017
Philippa Cheetham, MD: Carly, you work with the American Lung Association. You’ve heard the messages that Chris is trying to get across. Tell us your perception of all this. What do you think are the important issues for the American Lung Association to use to get the message out and to educate people in the community?
Carly Ornstein: I think Chris does bring up a great point—that prevention is not enough. We are really committed to raising awareness of lung cancer. I like that he used the word “radar.” We always say that lung cancer is just not on people’s radar like some of the other diseases are. Do we want it to be something that is a big fear for everyone? No. But we want it to be on your radar. You know the risk factors and you know how to reduce your risk factors. You know if you are high risk. And if you are high risk, you know how to get screened. You know the symptoms. If you are experiencing a symptom, you can be persistent with your doctor and say, “This isn’t right.” It becomes an instance of, “I know that maybe lung cancer isn’t the first thing that comes to mind, but let’s look into it.”
We need to change the face of lung cancer. Many lung cancer patients, because of the stigma, don’t feel comfortable speaking up and sharing their story. We have many lung cancer patients that feel isolated. They don’t know another lung cancer patient. And so, we are very interested in connecting them to a larger community. The American Lung Association is part of that community—connecting them to other lung cancer patients and connecting them to education and to resources. This way, lung cancer patients are empowered. Then, they are really meeting their doctors halfway, or more than halfway. They feel empowered to go into a doctor’s office and say, “Here’s what I want out of my treatment. Here’s what’s important to me. What are my options?” All of those things are very important to the American Lung Association. We have initiatives that really focus on all of that.
Philippa Cheetham, MD: Chris, the world has become a very small place now with social media, with the Internet. Patients are so empowered to own their disease. “Don’t just accept what your doctor down the road tells you, but go and get a second opinion.” “Do your research.” “Do your homework.” “Get educated.” “Get second opinions.” I mean, that’s hugely valuable, isn’t it? The family members, patients, and caregivers really can own this and change the course of their loved one’s cancer journey.
Chris Draft: Yes. They can own it, but I think it’s important to make sure that you’ve helped somebody that initially knew absolutely nothing about cancer, not just lung cancer. It can’t be so much about them having to be so educated about their disease that they can’t count on their doctors to be able to do it. The fact that 50% don’t do the basic genetic testing—that’s not about the survival. That is not about that person. They shouldn’t have to be the one that sends a message that says, “That’s unacceptable.” I go around the country and I see survivors that are directly related to their ability to be EGFR-positive, or ALK-positive, or ROS1-positive. You can see their quality of life is completely different. We have to make that a priority—that has to get done, and that has to go on across the board. Somebody’s care is not based on their ZIP code, right? We can’t allow that to happen. We can’t allow someone to suffer because they cannot drive far enough to get to that academic center, because they’re not close enough to it. We have to fight to make sure that the care that you would get in an academic center is on par with what you could get in the community. Or, the community center is on par with the care provided at an academic center.
Philippa Cheetham, MD: And there’s a big conflict there, isn’t there, because you want them to travel to centers of excellence to get the best possible care? But at the same time, patients have their own lives to live. When they’re having treatment where they’re having to go very regularly, sometimes even daily, it becomes a big issue not just for the burden of going but the cost of going. There’s a big financial issue with cancer care.
Chris Draft: It’s a huge, huge issue. Ideally, we don’t want them to have to travel. Ideally, they could get the care that they need at home. If they don’t have to travel, that means they’re spending more time with their spouse, with their kids, with their extended family, and with their friends. They’re already going through something that is serious and is difficult. But to have to then go someplace else? If you don’t have to travel, you might be able to maintain your job. Maybe they could make some adjustments, but they can still continue to work. And if you continue to work, that’s a big deal.
Philippa Cheetham, MD: And, in the profession, we know where these centers of excellence are. We know that there are specialists who are in academic centers, who are very involved in research, pushing the boundaries of cancer care. But patients don’t always know whether they’re with a good doctor who’s right at the forefront of the medical field or whether this is a community oncologist who may not have been to any academic meeting or kept up to date with research. How do we educate patients to get to the right people?
Chris Draft: Again, that message is being shared around. We’re highlighting different doctors. And the idea of academic centers—you’re seeing that more often. But it’s not just about the patient getting to them because that could mean that they’ve got to travel. There’s some internal housekeeping that we have to do, and that is making sure that the information that is at that academic center is getting to those local medical oncologists.