Not long ago, lung cancer survivors were rare—most people didn’t live more than a few years past their diagnosis. But as new treatment options have become available, the ranks of people who live five or even ten years after a lung cancer diagnosis are growing.

For these people, survivorship means grappling daily with treatment decisions, physical and emotional changes, and societal stigma. Patient advocacy in lung cancer has never been more necessary to help those diagnosed—throughout the course of the disease—manage these day-to-day issues and make better decisions about their care.

We sat down with Bonnie J. Addario, a lung cancer survivor and founder of the Bonnie J. Addario Lung Cancer Foundation (ALCF), a national foundation based locally in the Bay Area, to learn more about her story and the importance of advocacy.

Years ago, there were very few advocacy groups available specifically for people with lung cancer. What inspired you to start the ALCF?

Bonnie J. Addario: Being diagnosed with cancer is one of the most terrifying things for anyone to endure, but lung cancer in particular, presents a unique array of challenges. Mass media and past perceptions have branded lung cancer as a “smoker’s disease” and, as a result, patients are often left isolated and alone.

When I first went to the University of California at San Francisco Helen Diller Family Comprehensive Cancer Center, my doctor told me that if I didn’t start treatment immediately I would be dead in three weeks. So I started chemotherapy the next day and I'm watching them hang the IV bag for the very first time and it really, really engulfed me. I thought, “Oh my God, I have cancer, and not a good one.”

I promised myself right there at that very moment, that if I got out of this alive I would do something for people like me. I made it through alive, so I said to myself, "Okay Bonnie, time to put your money where your mouth is."

My personal experience with lung cancer made me determined to do more than just fundraise for the disease. That’s why in 2006, I decided to found ALCF. My goal was to address the misconceptions about lung cancer and fill the critical need for more resources, more education and more care for all people affected by this disease.

Lung cancer is strongly associated with smoking, but now we know that’s not always the case. What does today’s lung cancer survivor look like?

Bonnie J. Addario: The perception of lung cancer as a “smoker’s disease” is changing because we know that there are many other factors. I see so many young, active, otherwise healthy people diagnosed with lung cancer who have never smoked.

In the United States, one in 15 people are diagnosed with lung cancer during their lifetime. There’s many people I’ve met that think you have to smoke to get lung cancer. This simply is not true.

One of our big goals is to raise awareness that anyone can get lung cancer, whether it’s through a genetic predisposition or other factors like secondhand smoke and air pollution.

So this comes back to the idea of implicit bias in lung cancer. Studies have shown that people with lung cancer face stigma and bias on a regular basis. How does the ALCF approach this issue?

Bonnie J. Addario: I’m so passionate about this.

On the day that a person is diagnosed with any cancer, they shouldn’t be made to feel ashamed at the same time. So much of it goes back to perception. When someone is diagnosed with breast cancer, people are calling, wanting to help take your children to school and they're bringing you meals and they just can't do enough for you. But, when you're diagnosed with lung cancer, it’s not the same. It's a scary disease, and people stay away because they think you're going to die right away.

From an advocacy perspective we look at breast cancer as a model. There’s so much hope there and so many people are surviving. We’re gradually starting to see that in lung cancer too. With so many new treatment options and tools to diagnose lung cancer more accurately, survivorship is on the rise. We see people every day who have survived for two, four, eight, 12 years. It’s a similar top-down/bottom up approach we’re trying to take with lung cancer, where awareness about the disease and understanding that there isn’t one cause for it incites real action and creates hope within a community.

Our mission as a foundation is to make lung cancer chronically manageable by 2023, and part of that is knocking down barriers and stigma.

In the years since your diagnosis, how has the lung cancer landscape changed and what excites you most for the future?

Bonnie J. Addario: For the first time in years, there’s hope – in big capital letters. The conversations that I have with people who are newly diagnosed are now truly hopeful. Because we understand the disease so much better today it’s opened the door for new targeted therapies, including medicines for EGFR and ALK-positive lung cancers and now immunotherapies.

Lung cancer isn’t just one disease anymore. We know there are different genetic changes in the cancer that have opened the door for new medicines. It’s changing what it means to have this disease and bringing the day when it can be a chronically managed cancer closer to reality.

Cancer immunotherapy in particular has really been a game changer. For a long time at conferences like the American Society of Clinical Oncology (ASCO) meeting, lung cancer was never really on the billboard. But with immunotherapy, lung cancer is on everyone’s mind. It’s incredible to be able to talk to patients about this new option and explain how it may help their immune systems fight cancer. At the same time, it’s bringing more awareness to lung cancer in general.

Awareness seems to be so important at every stage. It’s clear that the earlier a person is diagnosed with lung cancer the better their chances of survival. How does your foundation approach early detection and awareness?

Bonnie J. Addario: Screening is at the top of our minds. We know that if you can catch lung cancer before it spreads, the likelihood of surviving five years or more improves to 55 percent.¹ It’s so important for people to get screened.

Part of our work is geared towards making low-dose CT (LDCT) screening available for anyone. For now, it’s important for people who are eligible for screening to take advantage of it because we know that early detection by LDCT can decrease mortality by up to 20 percent.^2,3

With survivorship on the rise people with lung cancer are faced with broader issues, both physical and emotional. How does the foundation help these people?

Bonnie J. Addario: Once someone is diagnosed, education and awareness are critical. To this end, we provide emotional support and education through our Living Room program. So much about lung cancer can be scary, but the Living Room is an opportunity for people to come to a welcoming environment with sofas and comfortable chairs and meet other people going through the same thing. They can talk and learn from physicians and experts about their lung cancer. We invite key opinion leaders to come and lecture about everything from chemotherapy, radiation, new discoveries like immunotherapy, comprehensive genomic profiles, blood-based biopsies, clinical trials and how to have a shared two-way discussion with your care team about your unique treatment program. These Living Rooms are sent via live stream to over 143 countries. You can also chat live with others online during the lecture. The point is you don’t need to be in attendance to take advantage of this program.

We’ve also created a video library where anyone can learn about their specific type of lung cancer as well as a lung cancer navigation mobile app that people can use to ask their physicians the right questions during appointments.

What do you see as the biggest need for supporting people with lung cancer?

Bonnie J. Addario: To me, it’s still about getting access to information and treatment to those people who don’t have it – people in rural areas, non-English speakers and the underserved. We don’t want to wait for people to come to our Living Room, we want to go to their communities to help.

Things in this space are changing so fast that people need to have access to information and have it be the right information. If I can extend one message to someone who’s been recently diagnosed it’s that education is power.

I believe we’re finally starting to make progress against lung cancer in so many different respects. The science is advancing, we have more effective treatments options like cancer immunotherapy and we’re finally breaking down barriers on the perception of the disease. Now the key is getting all people with lung cancer access to multidisciplinary care everywhere. Eighty percent of patients are seen in community settings and don’t have access to clinical trials and 50 percent of clinical trials happen in 10 states.⁴ We still have a great deal of work to do, but it’s important that everyone knows that we’re beginning to turn the tide against this disease.

To learn more about Bonnie and her work in lung cancer, you can visit the Bonnie J. Addario Lung Cancer Foundation website here. You can also find out more about what Genentech and the leading lung cancer advocacy organizations are doing to address barriers in lung cancer care such as stigma and bias at www.thelungcancerproject.org.

The Bonnie J. Addario Lung Cancer Foundation and the Addario Lung Cancer Medical Institute receive unrestricted grant support from Genentech.