An all-too-common symptom of a delayed lung cancer diagnosis has spurred one patient to lend her voice to patient advocacy efforts.
By Terry Wilcox
In October 2013 Lisa Goldman went to the doctor because of a bad cough. A chest X-ray showed that her lungs were clear, and the doctor said that all she needed was some codeine cough syrup. She was 41.
But the cough lingered.
Two months later she returned to the doctor and was told she had “irritated airways.” Prescription? Take two puffs of Proventil® (albuterol) with a Z-pack chaser, and she’ll be back on her feet in no time.
But the healing never came.
Two weeks later she was coughing up blood but received another “irritated airways” diagnosis. This time they brought in the big guns: a prescription for steroids, an Advair® (fluticasone/salmeterol) inhaler, and Deltasone® (prednisone).
But once again the cough lingered and healing never came.
On January 3, 2014, Lisa saw a pulmonologist, who sent her to get a CT (computed tomography) scan. Upon seeing the results, the doctor scheduled her for an immediate lung biopsy. Seven days later she was diagnosed with Stage IV non–small cell adenocarcinoma.
An All-Too-Common Story
This is an all-too-common story in the lung cancer world. Lisa did not fit the profile for lung cancer. She never smoked, nor has she lived or worked near smokers. In fact, she says, “I’m something of a health nut. I was teaching indoor cycling and fitness classes up until I became too sick to teach.”
Lung cancer is the second-leading cause of death in the United States, and it kills more women than any other type of cancer. In fact, lung cancer kills more women each year than breast, ovarian, and cervical cancers combined.1
And guess what else: Of new lung cancer patients, 20 percent have never smoked and an additional 60 percent are nonsmokers at the time of diagnosis.2 But no matter how many stories like Lisa’s are shared, we are still battling the stigma of the Marlboro Man, an image of terrible suffering resulting from a lifetime of smoking.
Hope on the Horizon
The good news is that the fight against lung cancer is a major success story. The past decade has seen huge advancements through molecular testing, which involves testing a patient’s lung tissue for genetic mutations that can present a road map for individualized treatments to target specific types of lung cancer. Right now the most common mutations to test for are EGFR, KRAS, ALK, and ROS1.
The ROS1 mutation occurs in only 1 percent of lung cancer patients, and Lisa is one of them. Right now there is a treatment that targets ROS1 called Xalkori® (crizotinib), and it was officially approved by the US Food and Drug Administration for ROS1 patients this year. Lisa is taking it, and for the time being the cancer is controlled.
But like many medications, Xalkori is a treatment, not a cure. Cancer is an ever-moving target, eluding attempts to stop it and often returning with a deadly vengeance after initial treatment. That is why innovation is a life-and-death priority for millions of patients.
For her part, Lisa knows that cancer can go from undetectable to crisis level in an instant. That is why she is lending her voice to the fight for patient access and the declaration that every patient has a value that no framework can ever capture.
1. “Out of the Shadows: Women and Lung Cancer,” prepared by the Mary Horrigan Conners Center for Women’s Health and Gender Biology, Brigham and Women’s Hospital, Harvard Medical School, April 2010. Available at: http://www. brighamandwomens.org/Departments_and_Services/womenshealth/ConnorsCenter/images/ WomenandLungCancerFinal-April22,2010pdf.pdf. Accessed July 22, 2016.
2. “Why Non-smokers Sometimes Get Lung Cancer.” American Cancer Society website. Available at: http://www.cancer.org/cancer/news/features/ why-lung-cancer-strikes-nonsmokers. Accessed July 22, 2016.
In an effort to help move the research along for ROS1 patients, Lisa has joined forces with the Bonnie J. Addario Lung Cancer Foundation (lungcancerfoundation.org) in launching the ROS1+ Research Project.
About Patients Rising
Voices of Value is an initiative of Patients Rising aimed at capturing the indelible voice of patients from across the country speaking about their own care concerns. Patients Rising is a national patient advocacy organization committed to ensuring that patients have a fundamental right of access to vital therapies and precision medicines, and that the provider, payer, and pharmacy sectors put the frontline interest of the patient first. Patients Rising will educate, advocate, and communicate so the patient voice is heard, access to new therapies is streamlined, and the pipeline of progress is not disrupted. There is power in knowledge, and there is strength in numbers. Patients Rising will lead the fight for the right patient to receive the right treatment—right now. Join us!