My name is Kate Pecora, I am currently a Senior at the University of Massachusetts. I double major in Healthcare Policy and Political Science, and I am 20 years old. After finishing my studies on an accelerated schedule, I am spending my third and final year of college wholly absorbed in a self-directed honors thesis project. Over the next five months, I will be traveling across the United States to hear directly from patients on issues of access, affordability, and quality. The purpose of this project is to fill the gap I encountered within my own education, a lack of patient voice.
WHAT IS THE POINT OF SHARING THESE STORIES?
By documenting the stories of individuals across the country, I hope to humanize the barriers patients face and the structural changes that could be implemented to make their lives just a bit easier. As a student of public health, there was a surplus of opportunities to learn about epidemiology or community healthcare. But taking a step back, I saw the patient was being glossed over. It made sense that my project fill that knowledge gap. In an time where patients’ voices are increasingly becoming recognized by institutions like the FDA, Congress, and Insurers, it is all the more important that we educate future healthcare professionals on best methods for incorporating patient voice.
Thus, my project’s purpose is to develop an educational book for these very students. To help develop a deeper understanding of access, affordability, and quality issues patients’ face. Not only will it feature stories of patients from across the nation, but it will serve as an advocacy toolbox to bridge education in the classroom with hands-on experience.
FOR THE LOVE OF ADVOCACY
My passion for patient advocacy began at a young age. I was diagnosed with Spinal Muscular Atrophy Type III, a form of muscular dystrophy, at age 5. When you are born with a disabling disease like SMA, growing into your disability is less of a shock. ‘Advocacy’ was often under the guise of bettering my own cause, whether that be fundraising for research with walks and galas, serving as an ambassador for the Muscular Dystrophy Association, or participating in clinical trials. Advocacy was not a life I chose; it was a life I took up in hopes that someday, my circumstances might benefit from the fruits of its labor.
While I am still an advocate for SMA research, my condition has stabilized with the approval of the first medication intended to stop the progression of the disease. But with this victory, my joy advocacy did not diminish. I have worked in the space since my freshman year of high school when I took my first internship within a government relations department of a children’s hospital (*Boston Children’s Hospital*).
ACCESS, AFFORDABILITY AND QUALITY FOR PATIENTS
This position opened the doors that led me down the path I am currently riding. Presently, I am a patient ambassador and frequently share my story with the SMA community. After graduation, I hope to join the efforts of industry to ensure that the patient is represented at all stages of research and development. As we know, a commercially available therapy is only purposeful if the patient community has a voice to its advancement. No one is more invested in obtaining and preserving access, affordability, and quality. By representing the needs of patient communities internally, I am confident that we will see an era of groundbreaking progress for patients across the world.
Though I’m young, I have fostered an appreciation for those who take the time to listen to the experts. And no, that’s not the doctors and researchers with their fancy degrees – it’s the patients. They’re the ones living in their bodies, with only one motivator to their advocacy efforts: the hope to be heard.
Kate Pecora is a senior honors student at the University of Massachusetts Amherst studying Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. She, herself, is diagnosed with Spinal Muscular Atrophy Type III. Kate is currently traveling across the country in search of the most compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter
You can read Kate’s stories in Patients Rising’s Kate Across America articles.
You can also listen to Kate’s interviews with patients in her weekly segment in the Patients Rising Podcast.
