The Lynx Group
Cholangiocarcinoma News

Taking Chances to Drive Innovation in Cholangiocarcinoma Therapy

August 2020, Vol 1, No 1
Stacie C. Lindsey
Founder and CEO
Cholangiocarcinoma Foundation

The COVID-19 pandemic has changed the way we do business, the way we interact with one another, and other tangible aspects of our work and personal lives. The pandemic has also provided many of us with much-needed time for personal reflection. Often, when we have the opportunity to take a step back, or in this case when we are forced to step back, the result of our thoughtful reflection can be an opportunity to slingshot forward.

A colleague from another nonprofit organization recently shared that she admired our work because “we were willing to take chances.” This gave me pause. I thought, of course we take chances, because when you are trying to find a cure for cancer, especially a rare and underfunded cancer such as cholangiocarcinoma (CCA), you do not have a lot of viable options.

Taking Chances

The Cholangiocarcinoma Foundation (CCF) and its stakeholders have taken many chances. We have taken on small and emerging industry and biotechnology partners. We’ve taken chances on young, innovative researchers and clinicians. We’ve taken chances with brand-new, and sometimes unproved, technologies and companies, and we’ve taken chances on groundbreaking collaborative opportunities and ideas. Taking chances is in the DNA of our organization. “Why?” you may ask.

Because we know that the trajectory of CCA must change in significant and meaningful ways. The global statistics do not bode well, which means that we cannot keep doing the same thing and expect a different result. We must be exceptionally forward-thinking and sometimes potentially disruptive.

The CCA community realizes that we must take chances. We must be innovators. We must think in different ways from others and do things in a different way from before. We simply cannot look at CCA in the way it has been looked at in the past, adhere to yesterday’s standards, and expect to be able to bring leading-edge, innovative solutions to patients.

Patients with CCA are depending on us, and that means that now, more than ever, this community of stakeholders must pull together in a united, global way. We must pool the data, share our resources and expertise, and consistently work together to flush out the very best ideas and bring them to the forefront. We must also engage in meaningful discussion and debate on important issues regarding CCA.

Taking the Right Kind of Risks

We will have to take risks, but we need to take the right kind of risks, the kind that look at the space in which we are currently living professionally and ask questions such as:

  • How can we work in a space where no one else is currently working?
  • What new hypotheses can we consider?
  • What kind of new collaborations or partnerships can we leverage?
  • What are the most important questions that we need to ask right now?
  • Who can we work with to get to the answers?
  • And, maybe the most important question—How can we stop competing and start creating?

Clayton Christensen, MPhil, MBA, DBA, a Harvard Professor and respected and innovative business professional, said, “Amateurs compete while professionals create.”

At CCF, we operate from this belief. I believe that at our very core we are all creators. However, we have been put into a competitive space, with predetermined rules, and we have continued to push forward without question.

CCF: Collaboration and Creativity

It is difficult to understand why institutions, companies, or nonprofit organizations are competing in a rare cancer space, in which we have increasing global diagnoses, deaths, and a wholly inadequate standard of care. CCF is an ardent proponent of collaboration, which is one of our founding values. It is a key trait in every stakeholder, partner, and opportunity with which we engage.

CCF does not compete, because we are focused on being creators. If we do not see a path forward, we create one; if we do not have a relationship with a key leader, we pursue one; and if a door is closed to us, we work to create a way around. We do not have another choice, because there is an urgency to this work that we simply cannot ignore. We will not wait for someone else to illuminate the path ahead; we will create a path and then help others to navigate it.

The CCA community is extraordinarily collaborative and innovative. This year, we have seen many remarkable results from these efforts, including the few examples listed below.

Three companies from our industry council, in coordination with the US Food and Drug Administration, are working on a groundbreaking clinical trial, which has the potential to change the face of clinical trials in the rare cancer and rare gene mutation spaces.

The CCF has funded a CCA-specific portal on the cBioPortal for Cancer Genomics platform. This is an open-access, open-source resource for the interactive exploration of multidimensional cancer genomics data sets. This effort will serve the entire global research community and will foster rich collaborative opportunities.

Our partner, Ciitizen, has created an incredibly advanced clinical trial finder for patients with CCA through a collaborative effort with CCF. This type of innovation is provided free to patients and researchers because of a unique nonprofit–for-profit partnership. This partnership will allow patients and researchers to engage collaboratively in CCA research in a way that has never been possible before.

However, in our efforts to create, CCF will never shift our focus toward building an organization for the organization’s sake. The needs of patients will always come first. The science, research, and advocacy that support patients with CCA continue to demand that we take chances and calculated risks. We will take those risks, because the lives of the patients in this community depend on it.

Related Items

The Urgent Need to Raise Awareness to Cholangiocarcinoma and Fund Research
By Teresa Delcorso-Ellmann
March 2021, Vol 2, No 1
I first learned of cholangiocarcinoma (CCA) in 2015, when my husband Steve was diagnosed with stage IV inoperable intrahepatic CCA and was given a prognosis of less than a year to live. He defied the prognosis and survived for 40 months, until his death in March 2019. When he was diagnosed, neither one of us had ever heard the word “cholangiocarcinoma” and did not know it was possible to have cancer in the bile duct. We both knew that a diagnosis of other gastrointestinal (GI) cancers, such as pancreatic or colon cancer, could be catastrophic and were stunned to realize that the treatment options and outcomes for patients with CCA were the most dismal of all GI cancers.
Where There Is Hope
By Laura R. Hnat
December 2020, Vol 1, No 3
“You have cancer.” These are the 3 little words that everyone dreads hearing and that doctors wish they never had to utter. Yet according to the American Cancer Society, an estimated 1.8 million people will be diagnosed with cancer in the United States this year, and more than 600,000 people will die of it.
Leading the Way to a Paradigm Shift in Cholangiocarcinoma: The International Cholangiocarcinoma Research Network
By Nilo Azad, MD; Mitesh J. Borad, MD
October 2020, Vol 1, No 2
In the past decade, there has been a sea change in awareness about cholangiocarcinoma (CCA). However, the standard of care has remained unchanged for more than 10 years. This year, the FDA approved a new targeted therapy, pemigatinib, which became a treatment option for approximately 10% to 15% of patients with CCA. The process of drug discovery, as well as changes in the standard of care, are becoming increasingly reliant on collaborative approaches that leverage the expertise and resources of a wide range of partners to strengthen the tools and knowledge that advance the research objectives of all stakeholders.

Subscribe to CCA News

Stay up to date with personalized medicine by subscribing to receive the free CCA News print publication or weekly e‑Newsletter.

I'd like to receive: