Addario Lung Cancer Foundation: Striving to Solve Young Lung Cancer

As a lung cancer survivor and advocate for current patients, I have always been outspoken about the need for greater lung cancer awareness. Just the other day I spoke with CURE about the laundry list of unmet needs plaguing lung cancer patients. However, in many ways, “awareness” is not enough. We need to take action to help better understand who is really at risk for contracting this disease and why.

At 21 years old, Jill Costello was in many ways the picture of a healthy young woman. College athlete, fierce competitor and a nonsmoker. Jill joined one of the two foundations I started, the Bonnie J. Addario Lung Cancer Foundation (ALCF), as a "voice" for young adults to show that anyone can get lung cancer. But Jill passed away just a month after fulfilling her dream of winning a medal at the national rowing championship for her college team. Young, athletic and healthy, Jill lost her battle with lung cancer at age 22. We then launched "Jill's Legacy," a youth volunteer group combating lung cancer by showing the world that young, never-smoking women are getting lung cancer and dying at tragic rates.

Through this work, Jill’s story became rather well known within the cancer community, however it is unfortunately not unique: Natalie DiMarco, a 32-year old mom of two from Petaluma, California; Taylor Bell Duck, a 21-year-old Division 1 athlete from Greenville, South Carolina; Ingrid Nunez, first diagnosed when she was an 18-year-old freshman at Cornell University; Corey Wood, a 22-year-old marathoner who once summitted Mt. Kilimanjaro. The parallels in their stories are striking — all are young, athletic, were healthy — and never smoked. Yet all have lung cancer.

We are still trying to answer this question: Why are so many young women who have never smoked dying from lung cancer?

Lung cancer at any age is a catastrophic illness, but it is particularly devastating when it affects young adults in the prime of their lives. In other cancers, such as breast cancer and leukemia, research has clearly demonstrated that occurrence at a younger age is associated with a distinct biology that guides treatment. Thus, development of a unique treatment approach for young lung cancer is needed. The reason lung cancer occurs in young adults is not clear and has never been systematically studied across multiple institutions and countries.

I wanted to find a reason, and so last year our sister foundation, the Addario Lung Cancer Medical Institute (ALCMI), launched the Genomics of Young Lung Cancer study with the active support of ALCF.

The “Young Lung” study is the first of its kind. An international effort linking medical centers, hospitals, research institutes and, most importantly, patients from around the world to understand why young adults under the age of 40 (who are usually quite healthy and never smokers) develop lung cancer and to identify gene mutations that may help impact their treatment.

Technological advances, such as next-generation sequencing, now provide tools to determine whether young lung cancers harbor a distinctive spectrum of genetic mutations requiring individualized management. Studying this biologically unique population may also identify new genetic sub-types needing targeted treatment strategies. This exciting study leverages ALCMI’s network of cancer centers/research management systems and ALCF’s patient outreach.

Our biggest hope is that this study will serve as the foundation for future discovery of novel targetable genotypes as well as inherited and environmental lung cancer risk factors. By studying comprehensive genomics on lung cancer tumors from patients diagnosed at age 40 or younger, our team has been able to tap into a new strategy for pinpointing targetable genotypes. Discovering these new genotypes is the first step to developing specific drugs to target and inhibit the mutations that drive the cancer. Our results may be exactly what other researchers need to continue analyzing specific populations of lung cancer so that “cookie cutter” treatment approaches become a thing of the past.

I invite you to learn more about our work at lungcancerfoundation.org and alcmi.net. We welcome your time, talent, or resources!