Long before its official start date, a single diagnosis led to the founding of The Bonnie J. Addario Lung Cancer Foundation (ALCF). During Christmas week in 2003, I found out I had lung cancer.
At 56, I was a wife, a mother, a grandmother, Petroleum CEO, and one of millions of Americans diagnosed with lung cancer. Faced with a 16% survival rate and following a 14-hour surgery, radiation, and chemotherapy treatments that invaded my formerly predictable world, I became a lung cancer survivor with a new purpose in life.
Despite losing three family members to lung cancer, when the doctor said, “You have lung cancer,” I realized I knew very little about the disease. So, I searched for information. I was surprised by how difficult it was to find credible information on lung cancer, treatment options, and how to live with cancer. Everyone kept saying, “Cancer is a journey,” but no one could provide me with a roadmap. I was lost and I only just diagnosed.
In a unique position to become the voice for the other 1.5 million people personally affected by the number one cancer killer, I began to think of ways to help people facing the crisis of this highly stigmatized disease. I asked myself,
“What about the 450 patients who die each day of lung cancer in the U.S. alone…and What about their families? Where’s the outrage?”
During my first chemotherapy treatment, I made a promise to myself: If I survive this, I will do something about the social injustice surrounding lung cancer. On March 6, 2006, the news broke that Dana Reeve lost her battle with lung cancer. I decided enough is enough. ALCF was born.
What is the mission of ALCF?
I founded ALCF to empower those diagnosed with lung cancer through education and to fund novel research efforts that directly impact patients today. Our innovative patient education programs support patients and their families.
[Editor’s Note: The Addario Lung Cancer Foundation has a 4 star (the highest) rating by Charity Navigator.]
We support promising research projects through our grants program and the formation of The Addario Lung Cancer Medical Institute (ALCMI), an international consortium dedicated to developing treatments that are more effective for lung cancer patients. To date, we have raised nearly $25 million and dedicated approximately 90% to novel research projects, patient education, and lung cancer awareness programs. Our ultimate goal is to make lung cancer a chronically managed, survivable disease by the year 2023.
The ALCF is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating lung cancer through research, early detection, education, and treatment. Our goal is to work with a diverse group of physicians, organizations, industry partners, patients, survivors, and their families to identify solutions and find a cure for lung cancer.
ALCMI’s ground-breaking study, “The Genomics of Young Lung Cancer Study,” aims to understand why never-smokers under the age of 40 are getting lung cancer and if they have a unique cancer subtype that doctors can treat differently. The development of targeted therapies—medicines designed to address the underlying genomic drivers of cancer—has revolutionized the treatment of lung cancer, however, there is an inherent need to match the right treatment to patients based on their specific genomic makeup.
Lung cancer, smoking, and stigma
Lung cancer kills more Americans than the next three most common cancers combined. Eighty percent of the people diagnosed either quit smoking decades ago or never smoked, but there is still a stigma attached to this cancer that takes the lives of nearly 160,000 Americans each year. During the past 39 years, the lung cancer death rate has fallen 29% among men while increasing 102% among women.
It is true that smoking is the number one cause of lung cancer. But every year, doctors diagnose more and more people who have never smoked a day in their lives. Lung cancer in never-smokers, if considered a cancer unto itself, would be the sixth deadliest cancer in the U.S. The American Cancer Society estimates that nearly 25,000 Americans who never smoked will die of lung cancer every year. That is greater than the number of deaths associated with leukemia, non-Hodgkin’s lymphoma, liver, ovarian, and bladder cancers.
Because there is so little funding for lung cancer research, we still don’t know why the number of never-smokers with lung cancer is increasing. Prevention and early diagnosis are extremely challenging as there isn’t a reliable early detection test other than a CT scan.
The importance of research
Research holds the key to discovering the causes of lung cancer, developing effective treatment options, and delivering those treatments to patients in a timely manner. What can we do to predict lung cancer risk, detect the disease at early onset, and, ultimately, prevent it? Are there novel drug combinations that researchers can create to preempt and overcome cancer cells? How can we personalize and provide targeted treatment for each individual patient? By funding research, the ALCF hopes to find the answers to these and other critical questions.
Patients participating in The Lung Cancer Registry have the opportunity to help researchers better understand the disease and develop better treatments. In turn, because it is an open platform, patients can do their own research and find information about others’ treatment plans and what does and does not work with similar cancer types.
With more than 18 million people worldwide diagnosed with lung cancer each year, there is a dire need to improve patient outcomes and quality of life. The more people who register, the more data there is to study. Researchers can identify patterns in the data that could lead to more effective treatments and better outcomes. When there are clinical trials or research specific to the type of lung cancer users have, they can opt in to participate in studies.
This data provides critical information to identify new trends, recognize the most important treatments, and develop new clinical trials and care practice guidelines. We need patients to opt-in because we need their information.
With the onset of new targeted therapies, comprehensive genomic profiling, and now immunotherapy, we can finally see the light at the end of the tunnel. But in order to progress, we simply must increase the funding for this disease and say goodbye to the myth that it is solely a smoker’s disease.