The Faces of Change: Advocating On Capitol Hill for Patients With Lung Cancer

In 2012, Ashley Murosky was leading the typical student life as a sophomore at Penn State University. That quickly changed after she pulled a muscle in her back and got an X-ray that showed a dark spot on her lung. The 19-year-old was told she had stage 2 lung cancer.

“I thought, “Am I going to survive?” and “How is my family going to deal with this?” Murosky, now 27, recalls. “I even thought about how grateful I was that it was me receiving the diagnosis and not one of my two younger sisters.”

With no family history of lung cancer and no personal tobacco use, as well as believing that she was “too young” to get the disease, Murosky underwent genomic testing. The results revealed an ALK gene mutation. Her health care team decided that surgery followed by traditional chemotherapy and targeted radiation offered the best course of action.

Three years later, Murosky relapsed with stage 4 disease. She started on a therapy that directly targets her mutation and remains on it today.

“Unfortunately, until they develop a cure, I will never be cancer-free,” Murosky says. “But I do feel blessed that the therapy is working. Some days are more challenging than others, but there are times where I forget that I am a terminal lung cancer patient.”

Murosky’s story isn’t uncommon: More and more young people, especially women, are receiving a lung cancer diagnosis despite no history of tobacco use, a leading risk factor of the disease.

Months after her 50th birthday, Danielle Williams learned she had stage 4 lung cancer that spread to her lower spine, pelvis and right shoulder. Williams had put off going to the doctor even though she had pain in her lower back and had lost a lot of weight — she thought her five-day-a-week workouts were paying off.

By December 2018, Williams dwindled to 94 pounds during radiation treatment. The following month, she began chemotherapy, which she still receives every three weeks.

“It was numbing to hear that I have lung cancer,” says Williams, now 52. “I live a healthy lifestyle, with exercise being a major component of my life, and I have never smoked. I felt in the beginning like my body had betrayed me in some way.”

Murosky and Williams turned their diagnoses into purpose, each volunteering with the American Lung Association’s LUNG FORCE initiative to spread awareness. In addition to its education and advocacy efforts, the association works to expand lung cancer research. Every year, the nonprofit organization holds an Advocacy Day in Washington, where patient advocates meet with congress members on Capitol Hill to share their stories. The common goal: gain federal support to fund lifesaving research.

Although patients, advocates and loved ones from across the country typically take their message directly to the streets of Washington, the March 25th event, which had 115 participants, was conducted remotely via phone and video conference calls amid the coronavirus pandemic. However, COVID-19 didn’t slow the team down.

They were able to make 172 calls, including 98 Senate offices and 84 House offices. Attendees asked Congress to support $44.7 billion in funding for the National Institutes of Health and make sure that current health care protections, including those for patients with preexisting conditions, will continue. Protections under the Affordable Care Act ensure that millions of Americans can access, afford and retain quality and affordable health care, which is essential for patients with or at risk of lung diseases, including cancer.

“I can express to (congress members) that without the research that was done on the ALK gene mutation, there is a solid possibility that I would not be alive today,” two-time attendee Murosky says. “I can take a pill two times a day and continue with my life instead of having to use traditional IV chemotherapy.”

Others aim to eliminate the stigma that only people with a smoking history get lung cancer. Williams, who attended the event for the first time this year, felt compelled to be vocal about her diagnosis once she came to grips with it.

“I had what some might call an epiphany. I started to see the bigger picture, and I recognized why I had been diagnosed with lung cancer,” Williams says. “My goal is to dispel the misconceptions that smoking is the only cause of lung cancer; there are many other risk factors. I want to be the face of change.”