Avi Khullar, Director of Patient Centered Care
What are the experiences of individuals suffering from chronic pancreatitis and acute recurrent pancreatitis as they seek care and support?
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How does this condition change the way that they go about their daily lives?
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If pancreatic patients could reimagine their ideal care experience, what would that look like?
These were some of the questions that we sought to answer as we spoke with patients and caregivers of those suffering from chronic pancreatitis and recurrent acute pancreatitis.
Over the course of 20 interviews, we listened to stories of excruciating pain, anxiety, and hopelessness as individuals and their families grappled with the medical system in search of a diagnosis or even just sufficient care. These conversations deepened our understanding of the immense impact of pancreatitis on the social, emotional, mental, and financial well-being of individuals and families – challenges that are rarely discussed while managing the physiological aspects of the condition. And we walked away from these conversations with a strong sense of urgency to do all that we could to ensure that patients battling pancreatitis could receive the holistic, compassionate, patient-centered care necessary to improve their well-being and lead resilient lives.
This report highlights the experience of patients and caregivers through their own words, identifies gaps in current approaches to care, and weaves together concrete ideas shared by patients, caregivers, and providers to improve patient outcomes and quality of life.
Inspired by these conversations, the team at Mission: Cure has identified concrete next steps to create a new patient-centered care model in which pancreatitis patients receive compassionate and holistic care that improves all aspects of their well-being and quality of life. We hope that the stories and themes noted in the report will inspire you and spark an actionable dialogue with providers, payers, and other stakeholders to drive measurable improvement in patient outcomes and experience.
My name is Stella and I’m a rising sophomore at Brown concentrating in Public Health and East Asian Studies. I am an active member of the Brown Taekwondo club, serving on the E-board. I am also involved in BURP (Brown University Relaxation Project) and in Connect for Health as a desk advocate for the upcoming school year. In my free time, I enjoy watching Korean films and dramas, historical ones set in late Chosŏn Dynasty and the colonial period are a plus! Other things I’m having some fun with are learning Korean and Mandarin and remotely exercising with friends through Zoom. My super power would be eating anything and everything I want without suffering the health consequences.
Melanie Anaya is a rising senior at Brown University studying Latin American and Caribbean Studies. At Brown she teaches a Citizenship class and works at the Providence Public Library helping with administrative work. She also serves as a translator at the Rhode Island Free Clinic. As a young girl, Mel witnessed the barriers to treatment and competent medical care in her parent’s rural hometowns in Mexico and it became her life goal to work on reducing these kinds of inequalities. Mel believes the work at Mission: Cure is one way she can work toward this goal. In her free time, she loves going jogging, but balances out this healthy behavior with her newfound love of cooking and baking. If Mel had a superpower she would teleport, so she could visit all her loved ones whenever she wanted.
Phoebe Gibbons (right) is a rising junior at Boston College studying Political Science and History. At BC she is involved in College Democrats of Boston College and serves as a mentor in their mentorship program FLAME. Phoebe serves on the board of the Election Committee, which organizes and oversees all undergraduate student government elections. During her free time she enjoys following and volunteering for elections, writing, and walking around the reservoir (either at BC or in Central Park). In high school Phoebe ran her class’s community service project and developed their relationship with the organization Midnight Run, which serves the homeless population of New York City. This sparked her interest and passion for community service and is partially what drew her to the Jesuit ideals of Boston College that are grounded in the service of others. Phoebe is eager to help Mission: Cure this summer and work towards achieving their goals of improving the outcomes and quality of life of patients with Pancreatitis and other rare diseases. She is especially drawn to Mission: Cure’s focus on patients and their families. If she could have any superpower, she would want the ability to control time or talk to animals.
Akilesh Raman is a rising junior studying Applied Mathematics-Economics at Brown University. At Brown he is the Chair of the Brown Undergraduate Finance Board and serves on the leadership council of Applied Math Peer Advising as well as the Brown Finance Club. Akilesh also contributes as a member of the Brown Political Review and International Mentoring Program, in addition to tutoring children in Kindergarten at a local school near Providence. He brings a unique and personal perspective to the Mission: Cure team. Three years ago Akilesh was diagnosed with the chronic condition Ulcerative Colitis and went through a severe bout of acute drug-induced Pancreatitis. He understands personally the pain and despair that Pancreatitis patients go through, having experienced it himself, and is drawn to Mission: Cure’s core principles and ambitious goals. Akilesh hopes to contribute to the Mission: Cure community through the internship program this summer and assist the team in discovering treatments and therapies for Pancreatitis and other rare chronic illnesses. During his free time, he enjoys listening to music and binge watching Netflix. If he could have one superpower, he would want the ability to read minds.
My name is Ellie and I’m a rising junior at Brown concentrating in public health. On campus, I am a member of Saving Mothers and GlobeMed. I also make podcasts for the Brown Political Review. I was inspired by the advocacy and awareness initiatives at Mission: Cure and wanted to learn everything I could about what it is like to work at a nonprofit organization. In my free time, I enjoy trying new fitness classes, spending time with friends, and discovering new music. My super power would definitely be teleportation.
My name is Melanie Morales Aquino and I’m a rising sophomore at Brown. I’m concentrating in Health and Human Biology and on the pre-med track. I am on the e-board for Save a Child’s Heart and Movimiento Estudiantil Chicano de Aztlán (MEChA). I am also a Bonner Community Fellow and am partnered with WTL Health Clinic as a patient services specialist. For fun, I am part of the Salsa club. During my free time, I like to play guitar and go out with friends. My superpower would be the ability to fly. I look forward to working with Mission: Cure because I value how the needs of patients are prioritized and they’re working diligently to find a cure for pancreatitis within 10 years from when it was founded.
My name is Alex Leake and I’m a rising junior at Brown studying Political Science. At Brown, I spend a lot of my time outside class on the Mock Trial team as well as Camp Kesem. I was inspired to work for Mission: Cure because I know that when we find a cure, thousands of lives will improve dramatically and countless others that will be diagnosed in the future can have peace in knowing there is a cure. In my free time, I love watching baking shows and attempting the recipes myself. If I could have any superpower, I would want to time travel.
