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The PancChat Podcast is a collaborative effort from Let’s Win Pancreatic Cancer and the Pancreatic Cancer Action Network (PanCAN), inspired by the long-running #PancChat Twitter/X chat.
Hosted by award-winning journalist Alisyn Camerota, each episode features conversations with leading researchers, clinicians, patients, and advocates who are shaping the future of pancreatic cancer care and research. Together, we deliver expert insights, personal journeys, and the latest breakthroughs—bridging the gap between science and lived experience.
Whether you’re a patient, caregiver, healthcare professional, or simply want to learn more, join us to connect, be inspired, and learn how you can help to accelerate progress in the fight against pancreatic cancer.
Julie Fleshman:
I'm Julie Fleshman, President and CEO of PanCan. On today's podcast, we will take a closer look at advocacy efforts in the UK and international collaboration through the World Pancreatic Cancer Coalition.
Alisyn Camerota:
Hi everyone, welcome to the PancChat podcast. I'm your host, Alisyn Camerota. We want to thank our sponsor, Revolution Medicines.
So for today's episode, we go across the Atlantic to focus on advocacy efforts in the UK and the international collaboration through the World Pancreatic Cancer Coalition. Our guest today is Diana Jupp, the CEO of Pancreatic Cancer UK.
So Diana joined Pancreatic Cancer UK in November 2017, bringing more than twenty years of experience working for cancer charities. She previously served as interim chief executive at Bloodwise and spent nineteen years at Breast Cancer Care, where she was the director of services and campaigns. With a background in medical anthropology, Diana is passionate about ensuring Pancreatic Cancer UK's work is grounded in patients' lived experiences.
She serves on the World Pancreatic Cancer Coalition and, in her spare time, is an avid cyclist, I'm told. Diana, great to have you.
Diana Jupp:
Lovely to be here. Thank you.
Alisyn Camerota:
Before we get to all of the advocacy that you do, just out of curiosity, what is a medical anthropologist?
Diana Jupp:
Well, it's really the understanding of how different societies and different cultures understand and see their body and their health and therefore how they seek and take medicine within society. It's sort of understanding body and health within society and culture.
Alisyn Camerota:
Well, that's really interesting, particularly given that we're going to be talking about the difference in advocacy, if there is one, between international and the UK and the US. So it sounds like you're the perfect person for us to talk to and get the whole context of that.
Diana Jupp:
Yeah, potentially. Let's see.
Alisyn Camerota:
All right. So tell us a bit about Pancreatic Cancer UK and what it does.
Diana Jupp:
Okay. So we're a charity that's been around nineteen years now, so for some time in the pancreatic cancer world, but in the world of charity and cancer charities here, we're still relatively quite a young charity. And we focus on research, patient support, and campaigning, and influencing. And that's sort of where we say advocacy kind of covers patient support and campaigning and influencing, as we call it here in the UK.
And we are around a twelve million size charity, funding a range of research grants in early diagnosis and in treatment breakthroughs. And then obviously a lot of our work is also around influencing and shaping the NHS here in the UK, ensuring that people have equal access and fast access to the best treatment and care, and then supporting patients and family and loved ones at the same time through our support line, patient information, and a range of other services.
Alisyn Camerota:
Tell us more about that. What does campaigning and influencing actually mean in real terms? What do you do?
Diana Jupp:
So we know, particularly here in the UK, we have one of the poorest survival rates and access to treatment and care. And the reason why our outcomes are poorer here in the UK is because of disparity in different areas. Different areas of where people live will have different access to different hospitals, better treatment, better care in some areas compared to others.
And similarly, it's often because the NHS is one large body, although it's Scotland, Northern Ireland, Wales, and England. Across all of those nations, it's quite a big body.
And we work and have a team here working hard to influence how to provide best care, how to influence that pathway to early diagnosis, to faster treatments, and to really have that optimal care pathway. And in order to do that, we have a team here that spends a lot of time looking at health policy, public affairs, so who we need to influence both within the NHS and within governments, the different governments and overall, to help shape and improve care and treatment in this country.
So for a relatively small organization compared to some of the larger ones here in the UK, we put a lot of emphasis on that for a charity of our size, because we know the complexity of influencing the NHS. The NHS is nearly like a religion to people in the UK. We stand by it. We're very loyal to it. But it is complex, and it is hard to change because it's a whole system across the whole of the UK. So all charities in the UK have a team such as this trying to work with them.
Alisyn Camerota:
That's really interesting. I didn't know that outcomes were poorer in the UK. Is there a way to quantify that so we understand it? I mean, does that mean in terms of months and longevity for patients?
Diana Jupp:
Yeah. So our overall five-year survival outcome here in the UK is seven percent. So it's substantially lower than in the US and Australia. And over half of people who are diagnosed with pancreatic cancer in the UK die within three months. And that's about late diagnosis and late referral into treatment.
Because other countries, we all have really the same access to the same limited treatments that there are. There are at the moment no diagnostic tools standardized anywhere really globally. So therefore, our supposition is the reason why our outcomes are poor is because of that sort of complex referral route here.
Alisyn Camerota:
No, that's staggering. Those statistics are staggering.
Now explain the World Pancreatic Cancer Coalition, how that differs from Pancreatic Cancer UK and what you both do.
Diana Jupp:
The coalition is that overarching body, and I think we were one of the founding members. It was really pulled together in order to understand that although we have different outcomes in different countries, ultimately, we're all still internationally dealing with one of the worst cancers there is.
So the need for the World Pancreatic Cancer Coalition came about to look at how we can share and learn from each other, how we can raise awareness of pancreatic cancer globally, and share tools and messaging. Over time, really led by Julie and the coalition steering committee, the work that's been done has been phenomenal in unifying us, particularly during Pancreatic Cancer Awareness Month and on World Pancreatic Cancer Day, so that we are all sharing the same message.
That helps because even in the UK, where we're quite advanced in charity messaging and branding, it helps to show that we're part of a large coalition, all asking for the same thing.
Alisyn Camerota:
What is that message?
Diana Jupp:
Over the last few years, it's been about raising awareness of the pancreas and pancreatic cancer. Campaigns like Hello Pancreas have been about raising awareness of the signs and symptoms and the role of the pancreas.
We did a Vox Pop near London Bridge asking people if they knew what the pancreas was. Most people didn't know. One person said it had something to do with pancakes. A few knew it had something to do with insulin and diabetes.
So that message from the World Pancreatic Cancer Coalition about building awareness is really key, helping people understand the signs and symptoms and when to go to the doctor.
Alisyn Camerota:
Yeah, it's really much less pleasant than a stack of pancakes. I'm really glad that you were educating people. I love that you call it in the UK, Vox Pop polls. We call it man on the street here, but I take your point.
Diana Jupp:
Well, I might have the wrong name. That might change.
Alisyn Camerota:
I'm sure you're right. It just sounds so much more Latin and sophisticated in the UK than us.
Diana Jupp:
I don't think so.
Alisyn Camerota:
So are there differences in advocacy between the US and the UK? Do you do something different or handle it differently?
Diana Jupp:
Yeah, it would be interesting to hear from the Americans how they see it. As I said, we put a huge emphasis on advocacy. We do large-scale campaigns and engage people to sign petitions, which we regularly hand into Parliament.
We try to get questions asked in Parliament. We work really hard to influence politicians and MPs so they understand pancreatic cancer is something they need to prioritize, similar to how breast cancer and prostate cancer gained attention.
I think one difference is scale. Because we're smaller, engagement can feel mighty quite quickly. In the US, advocacy often happens at a higher level but more individually, across multiple states with different systems and priorities. Fundamentally, though, we're all trying to do the same thing—change things for the better.
Alisyn Camerota:
What are some of the ways patients, caregivers, and supporters can get involved during Pancreatic Cancer Awareness Month and year-round?
Diana Jupp:
One of the most difficult things about pancreatic cancer is that, unlike other cancers, we don't have a large survivor community. Most people involved are bereaved, and advocacy becomes a therapeutic way to try to make change where things went wrong.
People get involved by writing letters, signing petitions, advocating locally, sitting on hospital trusts, shaping care locally, and influencing research. We have a research involvement network where people with lived experience review research applications.
We also involve people with lived experience in reviewing patient materials and shaping services. Recently, we launched a new service called Circles, which is a WhatsApp-based peer support group supported by our nurses.
And of course, fundraising plays a huge role. This year, we were Charity of the Year for the London Marathon, with thousands of runners and over a thousand volunteers lining the streets. London turned purple, and it was one of the highlights of my career.
Alisyn Camerota:
It's wonderful that people undergoing treatment can connect with others who understand.
Diana Jupp:
Absolutely. It's incredibly powerful for patients and families. Our nurse-led support line takes thousands of calls a year, supporting people through their journey and beyond.
Alisyn Camerota:
Tell me about the special thing London does for pancreatic cancer awareness.
Diana Jupp:
On World Pancreatic Cancer Day, St Pancras Station becomes St Pancreas. They turn purple, change announcements and social media, and we fundraise with a pop-up choir. It's joyful, moving, and incredibly special.
Alisyn Camerota:
Do we know anything about St Pancras that connects to this?
Diana Jupp:
Mostly that people mispronounce it. It's a beautiful historic station and well worth visiting.
Alisyn Camerota:
What else do you want people to understand about advocacy?
Diana Jupp:
That everything must start with the patient and caregiver experience. Our job is to listen, amplify those voices, and take them to the people who can make change.
Alisyn Camerota:
Thank you for all the work you're doing.
Diana Jupp:
It feels like momentum is building. The steps are getting bigger.
Alisyn Camerota:
Thank you so much for being here.
Cindy Gavin:
Thank you, Diana and Alisyn, for that enlightening conversation. I'm Cindy Gavin, CEO and Co-Founder of Let’s Win Pancreatic Cancer. If you or a loved one has been diagnosed, navigating this disease can be overwhelming, but you are not alone.
We encourage you to explore resources at letswinpc.org and pancan.org. Together, Let’s Win and PanCAN are committed to guiding patients every step of the journey with information, resources, and hope. We hope you’ll continue to tune in to the PancChat podcast.