“There is no better time to have lung cancer.” That’s the pep talk my oncologist gave me not long after I received my diagnosis. It might sound ridiculous, but my story proves it and demonstrates the value of the incentives in place that encourage the development of new, more effective medical treatments.
While receiving that news was absolutely devastating, I now know it was only the beginning of a new chapter. Five years later, I’m alive and well thanks to breakthroughs in targeted therapies to treat my cancer. My diagnosis represented an inflection point, not only in my life, but in the research and development process to bring new treatments to patients with non-small cell lung cancer. Like many others, my story is also a stark reminder that our elected leaders must preserve the incentives that encourage the discovery of lifechanging and lifesaving medicines for cancer and other hard-to-treat conditions, most importantly strong patent protections.
I was diagnosed with non-small cell lung cancer (NSCLC) with an ALK+ (anaplastic lymphoma kinase) amplification that occurs in only about 5% of all lung cancer cases. By the time it was found, I was Stage IV – inoperable, uncurable, but fortunately not untreatable. At the time, I was in the prime of my life. I was experiencing success at work, enjoying every minute of raising my three daughters, and even training for the longest swim race of my life across Long Island Sound near my home just outside of New York City. By every measure, I was the picture of perfect health.
But, things took a turn. First, I thought it was just turning 50 and a few extra pounds that was slowing me down—then maybe asthma or an allergy. Treatment for those conditions did not work, nor did it for pneumonia. Following more tests and exams, I began to worry more and more. Finally I received the news: cancer. The diagnosis was heartbreaking and shocking. I had no risk factors for the condition and no hereditary history that would have hinted at my risk for lung cancer.
Then came those encouraging words from my oncologist. I didn’t know what to make of them at first – I certainly wasn’t feeling lucky at that moment. But the more I learned about my diagnosis, the more I believed them. Advances in treatment for my disease had been approved by the Food & Drug Administration just weeks before. It was almost poetic.
Had my diagnosis come 10 or maybe even five years earlier, the targeted therapies that are specifically designed to keep ALK+ NSCLC at bay wouldn’t have existed. It took years of scientific discovery, millions of dollars of investment, and a dedication to research from companies to create the therapy that worked for me and many others with this rare form of lung cancer. Without that work and investment, I almost certainly wouldn’t be here to relay my story.
Life sciences companies have to take incredible risks to conduct research in rare disease categories. The research is daunting for numerous reasons. Innovators are working with a very small population size, limited data, and a harder uphill battle to succeed in bringing new therapies to market for patients. Without proper intellectual property (IP) protections and their associated incentives, drug companies might choose only to pursue treatments for bigger categories of patients or to stop innovating all together. This would be devastating to millions of people like me facing rarely diagnosed cancers, auto-immune diseases, neurological disorders, or metabolic conditions, to name a few.
But last summer, the World Trade Organization (WTO) waived international IP protections for COVID-19 vaccines, threatening the very incentives that enabled the U.S. to bring tests, vaccines, and treatments to market for a deadly virus with record speed. More recently, the Office of the United States Trade Representative (USTR) announced support for delaying a deadline to decide whether to extend a similar waiver to COVID-19 diagnostics and therapeutics instead of opposing weakened IP protections. A slippery slope of IP waivers is bad policy for patients like me and a real threat to the ecosystem that has brought hope to millions with challenging conditions and is hard at work trying to find answers for patients who still have none.
Without innovation that was made possible by patent protections, I wouldn’t have had these five years to see my daughters through high school and college graduations, to deepen connections with family and friends, and to advocate on behalf of other patients. My hope today is that our policymakers recognize the value of supporting and encouraging innovation so that others who receive a heartbreaking diagnosis have the same opportunities I did.