We are dedicated to advancing new treatment options and fulfilling our purpose to transform the lives of patients and their families. We understand the inherent value in partnering with advocacy organizations to reach patients where they are, in particular for people living with difficult-to-treat diseases or cancers, such as biliary tract cancer (BTC). Through our work developing cancer treatments, we know that the most valuable insights come from people living with these cancers, their loved ones, and their physicians. That’s why we focus our efforts in large part on partnering with advocacy organizations as they help us reach these patient communities as well as amplify the voices of patients and their families.
Patients with rare forms of cancer like BTC face heightened challenges given the cancer is often diagnosed at a later stage, resulting in a poor prognosis. Even more rare are patients with HER2-positive BTC. HER2-positive cancers tend to grow and spread faster than cancers that are HER2-negative, which can further impact prognosis. However, HER2-targeted therapies are emerging as a new treatment option for patients with HER2-positive cancer, which is why understanding HER2 expression via biomarker testing is a key step when navigating treatment plans. Patients with HER2-positive cancer are not only in need of new treatment options, but information that will help them navigate their disease journey and improve their quality of life.
Collaborating with advocacy organizations helps facilitate information sharing and connections within patient communities. Melinda Bachini, Chief Patient Officer of the Cholangiocarcinoma Foundation and BTC survivor, discusses the importance of advocacy for biliary tract cancer specifically: “Advocacy is crucial for patients with biliary tract cancer because many, especially those with cholangiocarcinoma, have never heard of this cancer before their diagnosis. The outlook can seem bleak and frightening when they search for information online. Advocacy provides these patients with essential resources, information, and support to help them through this challenging time.”
One of the most important resources for patients is biomarker testing. Knowing their biomarkers helps them understand their treatment options, especially as more targeted therapies become available. In collaboration with Jazz Pharmaceuticals, Melinda Bachini aims to raise awareness of biomarker testing, encouraging patients to discuss it with their doctors as soon as they’re diagnosed. “[Biomarker testing] is a game-changer for patients,” Bachini says, “showing that many biliary tract cancer patients have targetable mutations.”
Partnering with advocacy organizations helps to promote information around tools such as biomarker testing, but it also allows us to connect directly with patients to hear firsthand accounts, which helps inform our pipeline as we work to build solutions that keep patients at the forefront. Stacie Lindsey, CEO and founder of the Cholangiocarcinoma Foundation, describes the role of advocacy organizations in uncovering the voices of patient communities so that their perspectives are heard, and their insights can be reflected in research and development: "Partnerships with advocacy organizations are essential for bridging the gap between clinical advancements and patients' real-world experiences. By fostering open communication, patients are empowered to share their stories and contribute valuable insights to ongoing research, enabling more closely tailored solutions to their needs."
As a survivor herself, Melinda Bachini wants patients to try and remain hopeful, as hard as that can be: “The first thing I’d say is: don’t lose hope. So much research is happening and so many new advancements in this field, offering real potential for longer-term survival—far better than what you might read. So, hold on to hope, and please connect with the Cholangiocarcinoma Foundation and others who understand what you’re going through.”
As we advance our work and capabilities in oncology, we continue to focus on those for whom we can have the greatest impact, and how we can develop novel medicines that consider and incorporate lived experiences of patients to ultimately help them live longer, happier lives. Advocacy partnerships are just one area where we have reinforced our commitment to patients, by helping listen to and address the unmet needs within this patient community.
Read more about our commitment to advancing science for biliary tract cancer in a recent Leader Perspectives article.
