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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: Hi, I’m Julie Fleshman, President and CEO of PanCAN. January is Pancreatic Cancer Clinical Trials Awareness Month. We are once again joined by host Alisyn Camerota and pancreatic cancer survivor Martin D Hynes, III, to continue the conversation we started in Episode 13 on participating in clinical trials and the barriers patients may experience.
Alisyn Camerota: Let’s talk about the real barriers and the real obstacles rather than just the myths. For instance, is there extra cost? If you join a clinical trial, does the patient get hit with extra costs—extra scans or extra blood work—because you have to do more of that?
Martin D Hynes, III: That is correct. There is a burden above and beyond the standard of care. If you look at standard of care, that will be paid for by your insurance company—whatever insurance you have will pay for that. That could be something like FOLFIRINOX. You’re getting infusions every other week, blood tests, and scans once a month. All of that would be paid for by your insurance company.
However, as you correctly point out, above and beyond that, there are tests that the pharmaceutical company will want you to do. You may have more frequent infusions, more frequent blood tests, more frequent scans—and that all costs money—but that will be paid for by the pharmaceutical company. They will pay for the drugs and for those scans, so they will defray all of those costs.
And even above and beyond that, one of the concerns patients have is travel. I think I’ve heard you refer on previous episodes to people traveling across the country—maybe from New York City all the way out to Oregon. That’s expensive, but many of these companies will pay for that travel. They’ll pay for lodging, they’ll pay for meals, and in many cases they’ll even pay for a caregiver to go with you.
So each trial is different. Each sponsor has its own uniqueness in trial design, but the study personnel—the coordinators and study nurses—will explain what is covered and what is not covered. And even above and beyond that, there are charitable institutions that will help fund travel for cancer patients.
Alisyn Camerota: I didn’t know that. I didn’t know that the company would also pay for travel and lodging or for a caregiver, or that there were other foundations. I did think that was a barrier, but it didn’t apply to us because we were in the New York City area, which had lots of clinical trials. But that’s really interesting.
And I do want everyone to know that the pharmaceutical company trying to perfect or execute a clinical trial needs you. They need your participation, so they’re willing to pay for whatever the out-of-pocket costs would be.
Martin D Hynes, III: That’s absolutely right. Working in a pharmaceutical company, once we launch a protocol, we want patients to enroll. We’ll do whatever we can to help patients enroll—one, because we want them to get better, and two, because we want to establish a database that will be helpful.
So the company is motivated to help you participate in the trial, just as you’re motivated as a patient to participate in a trial that might provide benefit to you.
Alisyn Camerota: Let’s talk about medical issues that crop up and people’s fears around their own health or their health records being connected to clinical trials. What do you hear on that front?
Martin D Hynes, III: A couple of things. One, patients are often reluctant to leave their care team. They may have a surgeon, oncologist, and gastroenterologist they’ve formed a close working relationship with, and now all of a sudden you’re saying, go to another hospital, see another physician, another surgeon.
That reluctance is understandable, but you have to look at it as expanding the expertise that can help you. You’re bringing in different minds with different skill sets. You’re strengthening your care team, not eliminating your current one. Your original care team can continue to be involved in treatment decisions.
Alisyn Camerota: But Marty, is that realistic? In my limited experience, once you’re out of the purview of your original care team—let’s be honest—they’re busy. They have many patients who need urgent care. Do they really check in with the clinical trial team as much as a patient would hope, especially if they’re across the country or in a different time zone?
Martin D Hynes, III: It does require extra work, and some of that work falls to the patient—to be proactive in communicating. There are hurdles. It’s not easy, but it is possible to maintain that relationship.
Alisyn Camerota: That leads me to what I always say on this podcast: you really need an advocate. A spouse, a friend—someone who can advocate for you. I had to regularly check in with the original care team, send emails, schedule calls, get people on Zoom together. It became a very active part-time job. People need to know that.
Martin D Hynes, III: That is absolutely spot on. The role of the caregiver in this disease is intense. In some cases, the patient may still be trying to work while not feeling well, and they need help navigating the medical system—someone to advocate and make sure they’re not lost in it.
That guidance for caregivers—to intervene in that way—can really increase the chances of a positive outcome.
Alisyn Camerota: Another obstacle is that some patients aren’t well enough to travel to the trial site. What do you do about that?
Martin D Hynes, III: There are a couple of things to think about. Depending on how ill someone is, you may be able to get assistance with travel. Some airlines will meet you curbside with a wheelchair, help you board, and make accommodations if you work with them in advance.
But some patients may be too sick for that. In those cases, work with the study team to see what can be done locally. Some trials allow parts of the work to be done locally—not all, but some. You may be able to receive infusions or blood tests closer to home, which can reduce travel.
Alisyn Camerota: That’s good to know. Another complicated barrier is the genetic or tumor testing required to qualify for a trial. As a caregiver, I felt I had to spearhead a lot of that. Samples get sent out, labs don’t communicate, specimens get lost—it’s complicated.
Martin D Hynes, III: It is complicated. You’ve talked before about germline testing versus tumor testing. Some centers can do this on-site, but many send it out, and it takes time. In my own case, results were mailed instead of emailed.
That’s an area we need to streamline because this data is critical for determining trial eligibility. My encouragement to patients and caregivers is to get both germline and tumor testing done as quickly as possible and work with genetic counselors who can help facilitate and explain the process.
Alisyn Camerota: Prepare yourself for complications. FedEx tracking numbers will be wrong, samples will get lost—but you have to stick with it because this testing is required to get into a clinical trial.
What about concerns around medical information—tissue samples, blood work, personal data being shared?
Martin D Hynes, III: Information is shared in a limited way, and HIPAA rules apply. If you’re pursuing a clinical trial, you’ll need to share relevant test results with the treating site so they can determine eligibility. That information is shared only with treatment sites and is protected by confidentiality rules.
Alisyn Camerota: Overall, are things improving? Is it getting easier for patients to access trials?
Martin D Hynes, III: I’m optimistic that we can make things better. Organizations like Let’s Win Pancreatic Cancer and PanCAN are actively working to streamline access. ClinicalTrials.gov is hard to navigate, but trial finders from Let’s Win and PanCAN help.
We’re also working to provide clearer journey maps for patients—what to do first, next, and after that. Patient-to-patient support groups also help tremendously. You’re not alone in this.
Informed consent is another area that needs improvement—it can be overwhelming. Patient-friendly language, peer support, and even AI tools that translate medical language into plain English can help.
The treatments are getting better. There are more trials now, and the data is encouraging. It’s far more hopeful today than even five years ago, but we have to make trial access easier.
Alisyn Camerota: Marty, how is your health today?
Martin D Hynes, III: I’m doing well. I had my three-month checkup on December 23—blood work, CA 19-9 levels, and CT scans. Everything is within normal limits, and nothing concerning showed up. I’ve been incredibly lucky.
Alisyn Camerota: That’s wonderful to hear. Thank you so much for being with us. Is there anything else you’d like to say?
Martin D Hynes, III: Thank you for the work you’re doing. I share these podcasts with other patients based on their questions and stage, and they’re incredibly helpful. Don’t give up hope. Treatments are improving, and there has never been a more optimistic time for pancreatic cancer care. Seek help—help is out there.
Alisyn Camerota: Thank you, Marty.
Cindy Gavin: Thank you, Marty and Alisyn, for that informative discussion. I’m Cindy Gavin, CEO and co-founder of Let’s Win Pancreatic Cancer. If you or a loved one has been diagnosed with pancreatic cancer, you don’t have to navigate this journey alone.
Explore resources through PanCAN and Let’s Win. You can find PanCAN at pancan.org and Let’s Win at letswinpc.org, where you can search for clinical trials and access patient services and trial navigators.
Together, Let’s Win and PanCAN are committed to guiding you every step of the way—offering support, information, and hope. Don’t forget to follow PancChat for new episodes twice a month. PancChat is available on all major podcast platforms.