Global organizations unite in fight against pancreatic cancer

More than 50 patient advocacy organizations from two dozen countries gathered in Florida for the inaugural World Pancreatic Cancer Coalition meeting.

The coalition was created to raise awareness of pancreatic cancer on a global level to strengthen the efforts of worldwide patient advocacy organizations.

Julie Fleshman

Following the close of the inaugural meeting, newly elected committee members are working on agendas for this year’s World Pancreatic Cancer Day — scheduled for Nov. 17 — and the next World Pancreatic Coalition meeting, which will be held from May 2-5, 2017, in Montreal.

HemOnc Today spoke with coalition chair Julie Fleshman, JD, MBA, president and CEO of the Pancreatic Cancer Action Network (PANCAN), and coalition member Diane C. Tonelli, founding member of the Pancreatic Cancer Alliance, about the group’s priorities moving forward, how working collaboratively will better improve outreach, and the progress made thus far in the global fight against pancreatic cancer.

Question: What are the coalition's key priorities?

Fleshman: Our mission is to drive transformational change for all those affected by pancreatic cancer. Our priority initially is to raise the global awareness of pancreatic cancer and the sense of urgency for people to take action. We will accomplish this through the annual World Pancreatic Cancer Day, which will take place this year on Nov. 17.

Tonelli: The coalition’s key priorities are threefold. First, we hope to support each other across the world to keep focus and direction in our research and funding, and to pool our tools and resources to help us in the fight against pancreatic cancer. Second, we are aiming to make all organizations more stable so we can all continue to be a part of the fight. Lastly, we hope to create a worldwide pancreatic cancer clinical trial and research database.

Q: How will working collaboratively help to improve outcomes?

Fleshman: Working collaboratively, we can ensure our messages and actions are united and aligned to help accelerate our progress. As one voice, we are stronger together and we can accelerate change faster than working individually.

Diane C. Tonelli

Tonelli: Looking at the mission from a global perspective, we are better able to visualize and try to understand the barriers in moving forward toward our common and individual goals. There was immense benefit in the networking at the inaugural meeting. We met groups whose focus were patient and family based. One organization’s mission was raising money for scholarships and financial support for the children of patients with pancreatic cancer. Other organizations’ missions were to help pay for funeral expenses or help with the mortgage of family members who lost a loved one to pancreatic cancer. One organization from Maine is raising money to create a retreat site for patients in treatment. Coming together has given us the extra resources in patient treatment and care. We now have all of these wonderful contacts.

Q: What is the plan to try to increase research funding in hopes of improving patient outcomes?

Tonelli: As a group, our common efforts have a greater chance to attract greater funding resources. An example of this is with KRAS research. KRAS research projects are happening all around the world. Collectively, we can share data and create a stronger voice. In the focus of improving patient outcomes, the website letswin.org — supported by PANCAN — is comprised of current clinical research and trials for patients and physicians to access and match care needs.

Q: What progress are you seeing in the fight against pancreatic cancer now?

Fleshman: There is a tremendous amount of momentum in the pancreatic cancer research community. Our coalition wants to take advantage of this momentum and amplify our voices so that the public understands the need to get involved, take action, donate and play a critical role with their local pancreatic cancer organization in helping to advance the science and change patient outcomes.

Tonelli: People are looking in different directions to help attack the tumors and attack the cancer. Coalition members attended the opening night of the American Association for Cancer Research’s special conference on pancreatic cancer, which occurred on the last day of our meetings. We were able to network with some of the researchers from across North America who are working on smaller areas of the big picture, and their picture was hopeful. Researchers are focused on getting through the tumor barriers that appear impenetrable. Pancreatic cancer often is diagnosed when it is stage III or stage IV because there are limited symptoms in early stages. Patients often are diagnosed when they have large tumors that are encompassing important organs and vessels that make it inoperable. Being able to target and destroy these tumors is the key to a cure. It was great to hear that there is a lot of research and trials with this focus.

Q: What was accomplished during this year’s inaugural World Pancreatic Cancer Coalition meeting?

Fleshman: Many of us were meeting for the first time. We had the opportunity to learn about each other and the services and programs each of our organizations are providing. As a group, we brainstormed about the most critical areas on which the coalition can work together to create change and accelerate progress.

Tonelli: We all came away with a better and clearer understanding of how we would all be defined in the World Pancreatic Cancer Coalition. We are all nonprofits and we are all patient advocates. We came into this coalition knowing the leaders who will be steering this coalition came from nonprofits and will have a focus on patient advocacy. We are working for global awareness and global care. It was agreed that early detection is an important element that the steering committee will start working on. It is important to increase frontline urgent care physician awareness of the subtle symptoms that cluster together as a sign of pancreatic cancer. Early detection limits the damage and reveals better outcomes.

Q: Was an agenda set going forward?

Fleshman: We planned the World Pancreatic Cancer Day campaign. Next steps are to create a timeline for new initiatives that the coalition will take on together, launch World Pancreatic Cancer Day on Nov. 17, and create systems for sharing best practices across organizations.

Tonelli: We plan to keep a focus on World Pancreatic Cancer Day planning, to increase awareness, to better understand the resources available to each of us — such as the website with clinical trials — and to better understand the public policies and limitations from around the world.

Q: Is there anything else you would like to mention ?

Tonelli: There were many people present at the inaugural meeting who have been personally affected by or had a primary family member affected by pancreatic cancer. There were a lot of passionate and very brilliant people who put aside their personal gains for a common front. This was quite amazing. Moving forward, the strength and passion of these people is going to be the driving force of all its progress. My father died of pancreatic cancer, and I give my efforts in his memory. I am hopeful and happy to be a part of this big project. – by Jennifer Southall

For more information:

Julie Fleshman, JD, MBA, can be reached at Pancreatic Cancer Action Network National Office, 1500 Rosecrans Ave., Suite 200, Manhattan Beach, CA 90266; email: info@worldpancreaticcancercoalition.com.

Diane C. Tonelli can be reached through the Pancreatic Cancer Alliance, UMass Memorial Foundation, 330 South St., Suite 400, Shrewsbury, MA 01545; email: dctonelli@hotmail.com.

Disclosure: Fleshman and Tonelli report no relevant financial disclosures.