Young, Healthy, and Dying of Lung Cancer

Jill Costello was one of my childhood buddies. We met just before kindergarten at one of our brothers' basketball games and connected over who knows what, probably PB&Js and ballet.

We spent the next 12 years in school together, and out of school together—playing sports, dressing up as Spice Girls (Jill as Posh, me as Scary, our other girlfriends dutifully filling the other roles), giggling at our Catholic priest's Irish accent during grade school services, spending hours picking and eating sour yellow flowers, throwing chocolate chips at cars as they drove by and praying they wouldn't catch us, cracking eggs on the street hoping the day was hot enough to cook them (it never was in San Francisco, where we lived), bottling up our top-secret dreams on scraps of paper and burying them in Jill's backyard, counting the rainbow flags on Market Street as our moms drove us across the city to ballet, sipping tea at Jill's house with our moms and girlfriends each Christmas.

As we neared the end of high school, Jill was accepted to Cal Berkeley, where she would go on to study political science and excel on the Bears' varsity crew team as their coxwain. As a young, healthy, non-smoking young woman, Jill wasn't worried when she felt a dull stomachache, but as time passed, it didn't go away, so she decided to get it checked. In 2009, after a misdiagnosis, she was eventually told she had Stage IV lung cancer. She and her team had just returned from rowing at nationals, and this diagnosis meant she had a less than 2 percent chance of living more than one year.

Jill didn't focus on the survival rate. She focused on what she could do. In the year that followed, she led the varsity boat to win the Pac-10 championship, competed two weeks later at nationals, where they placed 2nd, won the Pac-10 women's rowing athlete of the year award and graduated from Cal Berkeley with a 4.0 GPA. All while undergoing brutal chemotherapy treatments that left her weak, nauseated, in pain and bloated.

She also became an outspoken lung cancer advocate. She was named director of public awareness at the Bonnie J. Addario Lung Cancer Foundation (ALCF). Addario is a longtime survivor, has devoted her life to lung cancer research and advocacy and was a central mentor to Jill. The first 'Jog for Jill' event with ALCF drew roughly 5,000 people and raised more than $300,000. These events now take place in cities across the country.

One of the things Jill cared about most was dispelling the myth that lung cancer was a "smoker's disease," a stigma that has plagued advocacy efforts to raise funding for research. As a result, the lung cancer survival rate has been stagnant for years, while that of other cancers like breast cancer have soared.

"It affects funding, public health and philanthropic funding, no question," says Geoffrey Oxnard, a thoracic oncologist at the Dana-Farber Institute. "It affects patients, how they think about their disease, and the stigma they get from their peers or from their healthcare—it affects their ability to tap into these advances."

According to the American Cancer Society, about 20 percent of the people who die from lung cancer each year in the US are non-smokers, which amounts to between 16,000 and 24,000 people. If lung cancer in non-smokers were its own statistical category, it would rank in the top ten deadliest cancers in the US. Lung cancer on its own is by far the most fatal of cancers.

Even with this serious funding challenge, Oxnard explains how investments that were made years ago are now paying off. He remembers how clinical trials for patients with advanced lung cancer ten or 15 years ago in some cases just involved four different types of chemotherapy, and all of the patients died within the year. Now, treatment options are broader, and involve not only gene-targeted approaches but also drugs that activate a patient's immune system to fight the disease, known as immunotherapy.

"Five years ago if you told me that there was an immunotherapy that could render stage IV lung cancer gone, and that the patient would be off treatment, living life, I would not have believed it," Oxnard says. "This is a dramatic change in the optimism we can offer patients today."

One of Oxnard's patients is a 50-year-old woman who was diagnosed with stage IV lung cancer. Three years ago, when other treatments weren't working, she approached him to join an immunotherapy trial. Today, Oxnard jokes that he doesn't see his patient anymore because with just five pills a day, she can keep her cancer "quiet" and live a normal life. She's now an active hospice volunteer. "It's incredible," he says. "We can give you your life back."

Jill died on June 24, 2010. I still think about her a lot, and try to keep up with lung cancer news. Last year I stumbled upon a story about an American doctor who was pioneering a way to bring a Cuban lung cancer drug to the US since President Obama had announced the embargo lift. After talking to Kelvin Lee, chair of the department of Immunology at Roswell Park Cancer Institute, I decided to pitch a story to VICE on HBO about how, when geopolitical issues are resolved, the medical communities of both countries can benefit.

What many people don't know is that despite being an impoverished country, Cuba has an advanced biotech industry and a cost-effective healthcare system. Part of the reason is because when the Soviet Union fell, Cuba lost its economic lifeline and quickly realized they needed to invest in not only healthcare, but specifically preventative care. As a result, one of the many successful treatments coming out of the country right now is Cimavax, a therapeutic lung cancer vaccine, which is catching the eyes of doctors in the US.

Cimavax has been successful in about 20 percent of lung cancer patients in Cuba. Those patients have a high concentration of epidermal growth factor (EGFR), a protein that allows the cancerous tumors to grow. Cimavax activates the immune system to target the EGFR, thus preventing that growth.

After many trips down to Cuba, and after receiving all of the necessary governmental approvals, Lee started the very first clinical trial of Cimavax in the US in January. Unfortunately, the medical pipeline doesn't work the other way around: Cubans do not have access to the treatments American doctors are developing, the ones that Oxnard's patients have so benefited from. However, Cimavax is a part of the same broad immunotherapy family that Oxnard is using at the Dana Farber Institute.

While immunotherapy and targeted therapy treatments have been successful in the US, they haven't worked for everybody. They're also expensive, and not as accessible as they should be. With more funding, the medical community focusing on this research in the US can continue to discover different genetic subtypes of lung cancer and create treatments that work to combat them. In the future, doctors hope they'll be able to widen the use of precision medicine, a personalized approach that treats the cause of each patient's disease at the molecular level.

Given the advancements we've made in cancer treatments in the past five or so years, there was no reason Jill's diagnosis had to be a death sentence. If doctors had only better understood her cancer, they would have been able to use more than just their limited chemotherapy drugs of the time, which broke down her body.

Before Jill passed away, she testified, fought and raised funding for more advanced research and treatments. The Addario Lung Cancer Medical Institute (ALCMI), the partner organization of the one Jill worked with, ALCF, conducted the Genomics of Young Lung Cancer Study in 2015, finding that there is in fact a "young lung cancer," and it is very different from the one we've come to know. More than 75 percent of trial participants have cancer-promoting genetic mutations that can be treated by precision medicine or targeted therapy, which halts cancer progression by interfering with specific molecules. Doctors know this can help many of these young patients live longer lives.

This is groundbreaking research that Addario and the ALCMI think could have helped Jill and the thousands of young non-smokers who have died of lung cancer. Jill's fight wasn't about Jill, it was about the other people who inevitably will go through what she did. And although she isn't physically here with us, her name, her story, her fight is very much present.

To this day, Jill inspires those leading the fight, including Oxnard. "In her memory," he says, "we keep fighting and changing our understanding of lung cancer."

Watch VICE on HBO Friday at 11PM

Read This Next: This Lung Cancer Breakthrough Brought to You by Late Nights at the Lab