Fighting even the rarest cancers boosts every Missourian’s health | Opinion

Cholangiocarcinoma, or bile duct cancer, is one of the most challenging and underrecognized cancers, with limited treatment options and a grim prognosis for many patients. There are approximately 400 new liver and intrahepatic bile duct cancer cases in Missouri annually. Those that are specifically cholangiocarcinoma are around 125, as it is the second most common type of liver cancer.

But despite its rarity, the need for awareness and focused research is immense, as early detection and innovative therapies can make a lifesaving difference. With February being Cholangiocarcinoma Awareness Month, it is an opportune time to learn about this disease that affects too many lives.

For the past three years, I’ve had the privilege of working closely with patients and caregivers confronting this disease. I’ve witnessed the profound isolation and fear that often accompany an aggressive cancer diagnosis. These patients and their families face extraordinary challenges with courage and grace. They deserve greater public support and the hope that comes with innovative research, better treatment options and improved patient outcomes.

This deeply personal connection is why I’ve joined forces with CCF, the Cholangiocarcinoma Foundation, an organization at the forefront of addressing this disease through education, patient support and groundbreaking research. A key part of CCF’s mission is to fund early-career researchers, with an impressive 71 research fellowships totaling $3.83 million in seed funding. These fellowships are designed to inspire innovative, high-quality research and raise awareness about cholangiocarcinoma.

One of the challenges of rare cancers like cholangiocarcinoma is that they often receive less funding from major agencies and large foundations because of limited data and their perceived lower prevalence. CCF is bridging this gap by providing early-stage funding to produce the data researchers need to compete for larger grants and funding from major agencies such as the National Institutes of Health. This strategy accelerates scientific discoveries and ensures that cholangiocarcinoma remains a priority in the broader research landscape.

Cholangiocarcinoma doesn’t just affect individuals — it also impacts families, communities and health care systems. Yet progress remains hampered by limited public awareness and funding. We need robust support from policymakers, health care providers and the general public to improve outcomes for those diagnosed with this aggressive cancer. Amplifying our voices can drive change and offer hope to countless families.

I urge everyone to learn about cholangiocarcinoma, support ongoing research and advocate for better resources for patients and caregivers. Together, we can shed light on this often-overlooked disease and pave the way toward earlier diagnoses, more effective treatments and a brighter future for all those affected.

Visit curecca.org to learn more and join me in making the future brighter. Your support matters.

Kim Kempf is a rare cancer survivor director of volunteer engagement for the 501(c)(3) nonprofit Cholangiocarcinoma Foundation. She lives in St. Joseph.