Last year, the American College of Gastroenterology (ACG) published clinical guidelines to provide an evidence-based practical approach to the diagnosis and management of chronic pancreatitis for the general gastroenterologist. We, at Mission: Cure, commend the efforts of the authors and believe that these guidelines are an important step forward for pancreatitis patients who continue to seek a diagnosis and treatment plan while suffering with pain, hopelessness, and poor outcomes.
Road towards a pancreatitis diagnosis My journey with pancreatitis started when I was about 10 years old. Throughout my years in school (elementary, middle and high school), I was misdiagnosed with a “sensitive stomach.” My pain was not taken seriously by doctors. I was sent to several counselors while I was in college because, despite my symptoms, doctors believed that the pain was in my head. I received prescriptions for chocolate as a way to ‘just calm down’ and let go of some stress. This was probably well-intentioned but clearly did not address the source of my intense pain. (Now…
About Mission: Cure Mission: Cure was founded in 2017 to find effective treatments and, ultimately, a cure for pancreatitis– an extremely painful, degenerative and costly disease. Led by Megan Golden, a leader in innovative, outcome-based financing such as “Social Impact Bonds,” and Linda Martin, a veteran technology entrepreneur, Mission: Cure is pioneering a new funding model that creates new incentives for patient outcomes. Innovation in curing disease is even more needed in the post-COVID-19 world. Job Description Position Summary Mission: Cure seeks student interns to help with this important initiative. We are looking for hard workers and creative thinkers interested…
Exceptional Care Award During our 2020 Moments of Hope party, we asked patients to submit the names of care providers that gave them a Moment of Hope during their disease journey. Pancreatitis is a commonly misunderstood disease, even in the medical community. New science has revealed that chronic pancreatitis is not caused by alcoholism, but rather a combination of environmental and genetic factors— yet the stigma still persists. The lack of understanding of the disease often hinders pancreatitis patients from receiving the best care.
Having chronic pancreatitis increases the risk of pancreatic cancer. According to Dr. Randall Brand, Gastroenterologist and head of the early pancreatic cancer detection program at the University of Pittsburgh Medical Center, people with chronic pancreatitis have approximately a five percent chance of developing pancreatic cancer over a 20-year period. [1] However, recent research has shown that the risk is not evenly distributed among chronic pancreatitis patients. People with PRSS1 variants (sometimes called hereditary pancreatitis) have a significantly increased risk of pancreatic cancer, although it is hard to accurately quantify the risk because different research studies have shown different risk levels….
What are the experiences of individuals suffering from chronic pancreatitis and acute recurrent pancreatitis as they seek care and support? How does this condition change the way that they go about their daily lives? 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.
Stabbing Pain Leads to Acute Pancreatitis Diagnosis In December 2018, Laura Perry, a 24-year old previously-healthy law student, began experiencing abdominal pain after returning home from a trip to Mexico with her family. While in Mexico, Laura had contracted an infection. Believing that it was nothing serious, her doctor prescribed antibiotics. The antibiotics were unsuccessful in reducing the pain so Laura went to an urgent care in hopes of a more effective treatment. The urgent care doctor incorrectly diagnosed H. Pylori and prescribed more antibiotics. But, Laura’s pain intensified. She describes the pain as the worst pain she had ever…
Key Takeaways Currently, ICD Codes for pancreatitis associate the disease with alcohol consumption, which is scientifically inaccurate. Physicians use a system called ICD-10 codes to identify diagnoses and procedures in patient medical records and for insurance reimbursement. Chronic Pancreatitis has been inaccurately thought to be caused by alcohol. This is now known to be inaccurate, but is still reflected in ICD codes. That needs correcting. Inaccurate coding harms patients, causing incorrect diagnosis, delayed treatment, bias and stigma. Mission: Cure has submitted a proposal to the CDC to delete the code for Alcoholic Chronic Pancreatitis and replace it with scientifically relevant…
We at Mission: Cure are shocked and outraged by the circumstances surrounding the deaths of George Floyd, Breonna Taylor, Tony McDade, Sandra Bland, Ahmaud Arbery and countless other victims of anti-Black violence. We stand in solidarity with the Black community, the Black Lives Matter movement, and efforts to end systemic racism. We commit to addressing racial inequality whenever and wherever we encounter it. However, as white female leaders, we acknowledge the limits of our own life experiences and therefore, will seek out and listen to those who face systemic injustice on so many levels. We commit to look into ourselves…
