 With early detection being so key, are there any tests that are currently in development right now?

 There are tests in development. I think the most important thing to say about early detection is that even with existing tests, the news has been very encouraging, based on recent results. There's a lot of nihilism about pancreatic cancer. But what we've been able to find in recent years based on our own studies, and some of the national data is that pancreatic cancer can be cured in a percentage of patients, if it's detected early enough.

We've always known pancreatic cancer detection was important. But what's been particularly encouraging is that if we detect patients with the earliest stage, stage 1 pancreatic cancer, their survival is actually very, very good. So it's taken a while for us to really gather that kind of evidence that, first of all, we can, with our existing tests, detect stage 1 pancreatic cancer in a significant number of people who are under surveillance, and that when we follow these people for many years, that they're at five years of survival and the 10-year survival is actually well over 50%.

We still have the major challenge of trying to identify patients with stage 1 pancreatic cancer, but even with existing tests, this is what this data is showing. That this can be achieved. So that should just increase our determination to do better to develop a better test.

So, with respect to improving tests, there is encouraging evidence about blood testing that it may play a role in, in helping us to diagnose pancreatic cancer. It's still not quitevsomething we can roll off routinely. Our the testing that we do currently means imaging the pancreas with scans. The encouraging data there is how do we do better with scans. And that's also very exciting. Folks who pay attention to technology will read a lot about artificial intelligence and how it can be applied in many different areas of life. So, we're beginning to see a lot more evidence that applying that kind of artificial intelligence, or what we call deep learning, can really improve what we can see beyond what the radiologist can see. So one step is taking advantage of these emerging technologies to allow us to get more out of the imaging tests that we're doing.

Another important area, though, is can we use blood testing to develop very accurate tests that could complement imaging. The data are emerging, so that we will be able to do that. And that a combination of imaging tests, along with blood tests can do a better job. We anticipate then just using imaging tests alone. So it's not like we can easily diagnose early stage pancreatic cancer. But I think the evidence is showing that we can do better with that kind of combination.

Which areas of early detection of pancreatic cancer would you say are the biggest priority right now?

 The biggest challenge is really identifying people who should undergo pancreatic surveillance. In other words, that's trying to identify the person and find out if they have enough risk? We can judge that they would merit for regular surveillance when we take pancreas surveillance. Typically, that's having an annual scan. And so that's over many years in middle aged patients, maybe age 50, but it could be for 20 to 30 years. That's a long period of time.

So when you are deciding whether or not someone merits that kind of annual surveillance, we want to make sure that the evidence justifies that kind of long-term commitment. So far, we've only been able to show that this really is valuable for people who have significant family histories, and especially those who carry a cancer susceptibility mutation that they've inherited.

So what we're trying to do better is risk stratify. A lot of people have a family member with pancreatic cancer. That would raise concern. Thankfully, the vast majority of those individuals will not get pancreatic cancer. But you know, when there's multiple close blood relatives with pancreatic cancer, then the risk goes up. And building upon that is a combination of understanding about your inheritance and acquired risks – what your metabolism is. Risk stratification is an area of great importance, and we're gradually getting better at doing that.

That is still an ongoing challenge. We have to identify new susceptibility genes. We don't understand why some cancer runs in some families. We know about some of that. We know some of the genes that are responsible. But we're still in the voyage of discovery about identifying new susceptibility genes that will help more families. And there's other risk factors. If you go to your doctor, and you're trying to figure out how much risk you have for heart disease, for eexample, you get your cholesterol measured ,your glucose checked and your blood pressure measured, and how many smoking years. That is a very effective way of risk stratifying an individual. So we anticipate in the future that we will be much better at that kind of risk stratification so we can identify who really does benefit from an annual surveillance.

 Who does need to have surveillance testing?

 I think the evidence is clear. If you dig into the literature, some of the societies would say screening, or pancreas surveillance isn't recommended and that they're trying to make that statement about just the average risk individual, or maybe an individual who has a family member with the disease. And of course, naturally, with pancreas cancer, naturally, they want to know what they should be doing … For people who we judge have quite a high risk, maybe they carry a susceptibility gene mutation like BRCA1 or BRCA2 and several of the genes that we know about, those risks are really significant over a lifetime. What we've found is that those people, we can identify high-risk pancreatic cancer. A significant percentage of those people, in identifying it early, really does improve outcomes in these individuals. So in that, what we sometimes call a high risk group, which is somewhat of a misnomer, because, they're not necessarily at super high risk, but they are at a high enough risk to warrant surveillance based on current evidence.

 Looking forward, what is the future of early detection for pancreatic cancer?

 We've made a lot of progress in the last 10 years and going back 20 years. So I think there's a lot of room for optimism because we've been able to take advantage of emerging technologies. We're getting better at understanding risk. And so putting this all together in synthesizing it and putting it into a routine medical record and a medical assessment will allow us to be able to offer surveillance for more individuals.

One of the other emerging developments in pancreatic cancer has been part of what we've seen in other cancers as well. More routine access of individuals to a genetic test that helps to define their risk. The evidence in recent years from our own group and from several institutions across the country tell us that it's appropriate to offer a gene test for patients with pancreatic cancer, or even their immediate blood relative at the time of diagnosis, or at least soon after, to try and identify if there's something running in the family that would suggest that other family members are at risk of pancreatic and other cancers. This is very important because it helps us to identify family members who would benefit from surveillance, not only for pancreatic cancer but for other cancers. Like women might need earlier breast or ovarian cancer surveillance, based on a mutation that they find. And these gene testing steps can also help determine what's an appropriate treatment for the patient. So what's happened is that that's gone from being something that is occasionally done to something that we're trying to get done much more universally, much more routinely in clinical practice.

 Looking over the next five to 10 years, what do you think needs to happen in order for us to see this improvement?

 The improvement in early detection has been possible because the families have stepped forward and participated in early detection studies. We started doing early detection studies more than 20 years ago … And it's the collaborations across multiple centers. Because these kinds of studies take many years and involve many individuals. In our own program, we've followed 1,000, individuals in our multicenter study that has followed similar large numbers across multiple institutions, collaborations internationally. So we've been able to work closely together to understand what is best practice and to change our response to emerging evidence, and just gathering the data together across multiple centers. The power of many is what's really required. So, we need to continue to do that to have large multicenter studies to evaluate emerging blood tests for pancreatic cancer, early and emerging imaging tools, and emerging ways of risk stratifying. So working together is key.

 From a public standpoint, what is it that the public needs to know so that we can try to make these improvements?

 That's a challenge in the sense that there's some nuance there, because you want to be able to offer early detection as widely as possible. But there are important considerations about who is the most appropriate individual. We're not yet at the stage where we can offer pancreatic surveillance and say it should be given to everybody over a certain age. You have to know your family history. And sometimes you have to go and say, “Well, maybe if I get a gene test, because my mom or dad had pancreatic cancer, well, what does that mean?” And that may require that kind of public education. And it is really also about educating primary care providers, clinicians who may not deal with pancreatic cancer that often to educate those because it's still something that the first step is often going to provide an understanding what is the appropriate step for them Should they be doing anything more? Should they be getting a gene test? Should they be going to a provider to get pancreas surveillance, for example?

And, and there may even be a point soon when blood testing is offered as a kind of a pan cancer test, not just for pancreas, but for multiple cancers. And is that something worthwhile? There's have been clinical trials that suggested that could be worthwhile. But we’re still awaiting data. So it's an exciting time. And it's not easy to give a simple public health message. But there's so much expertise now available. And so much more public awareness and so many foundations, trying to help individuals in the public, I think that's an appropriate place to gain additional information, if not from private provider, but one from one of our pancreas foundations who are doing everything they can to help.

Emerging Early Detection

 What are some examples of side effects that an individual with pancreatic cancer might encounter?

The side effects are very varied and range from very mild to very severe. And the side effects are often what you might expect: nausea, vomiting and fatigue, are reasonably common. Often it's watching blood tests to make sure that your blood counts don't drop too low. There are sometimes more significant side effects that may be only developed with time like, you know, painful toes from neuropathy. There can be a wide variety of side effects. The more significant statement, though, is to say that historically when we started giving chemotherapy to patients, you know, this is a deadly disease, and what's the point. But the truth is, actually, a lot of patients will feel better after they've been treated, because even if the treatment isn't curative, it will often have an effect on the tumor, enough to reduce some of the symptoms that the patients are having, especially pain. And that that extends to other treatments as well, you're trying to figure out: Should I have this procedure? My tumor is blocking my bile ducts or my stomach and, in fact, you'll often feel a lot better. There is a risk/benefit equation that people are doing. So that's the key question. And that's a question that you can discuss carefully. What are your goals for care? What is your provider advising you to do? And some folks will be going on standard chemotherapy. And there are some therapies that are likely to give you a little bit more side effects, but maybe a little bit more likelihood of longer-term response. Some combinations may be a little bit less toxic, and will work pretty well, but maybe not quite as well. So, you know, that becomes one of the goals of care. And bearing in mind that although there's uncertainty, actually, people will often feel somewhat better once they've had a couple of rounds of therapy.

 How does this affect quality of life when it comes to side effects?

I think that the challenge for many patients is, if they don't respond to one therapy, then they go to a second-line therapy, perhaps, or even a third-line therapy. And they may want to participate in a clinical trial. And gradually, depending on the chemotherapy, it's very individualized depending on which agent you may not have the bone marrow or the overall reserve, you know, problems with neuropathy or things like that. That can develop over time, that will limit your ability to have therapy. So, a good oncologist will take all this into account and try and manage you appropriately. We've learned to try and understand and maximize response. Also, sometimes a lower dose combination can be very effective, so that oncologists can try and manage what is an appropriate therapy for an individual to try and limit those side effects.

 How can supportive care play a role in assisting with some of these side effects?

 There are strategies for many of the side effects that requires a good a good multidisciplinary team, not only your oncologist, whether it's managing neuropathy with the types of footwear and take good care or the therapies to try and minimize nausea. These are very important to try and make sure that you can manage other aspects of care that are very important for patients’ pancreatic cancer that will keep them stronger, fitter, adequate attention to nutrition and exercise, for example. A patient with pancreatic cancer will often not be able to digest their meals as well if they are not making a pancreatic enzyme. So, the simple act of replacing your pancreas, digestive enzymes and normal function with meals that is often impaired, and may not always be recognized, can help. That's one of the major factors that can cause weight loss. And if you're losing weight very quickly, you'll lack energy. It can even contribute to your mood and well-being.

Exercise is still a question of how much exercise can you do. It's surprising that, even people with other kinds of advanced diseases, have heart failure. And maybe the thing is to rest. And in fact, what we tend to find is exercise has positive benefits. And we suspect that even for improving outcomes from pancreatic cancer, exercise, both the cardiovascular and strength training may have benefits on survival. It certainly can make you feel better. And maintaining a certain strength as best you can is going to improve your quality of life.

So, there are many different components to care and patients with advanced pancreatic cancer. These are important ones. Another one is preventing blood clots, which, unfortunately, are more common with patient pancreatic cancer than with several other cancers. And so taking a shot to prevent clotting is associated with improved survival in many studies. And so that's something that patients should seriously consider. Most people won't get clots, but it is a significant and treatable component of their disease that can have great benefits, and is relatively safe.

 Are there things, like exercise, that can help with the side effects?

It may help with side effects. You know, as I say, side effects, for example, from chemotherapy: There are drugs that are very potent at doing that, whether they're the kind of traditional chemotherapy, anti-nausea drugs, or even some of the kind of marijuana derivatives that are medical pills for refractory cases, those are very important. But it's surprising how exercise can help people tolerate what might otherwise be significant symptoms, be it the pain or nausea, it is something that is individualized. But it's not maybe something that you're thinking about. But it has a role. I think it's an area that's still being investigated. There's so many important questions in pancreatic cancer. Some of these supportive care questions are still being interrogated to what, what value they actually have, but there is a good deal of circumstantial evidence to suggest that they would help.

 Are there resources that are available that patients can visit and try to learn more about their supportive care options?

The National Pancreas Foundation has a variety of organizations that are able to provide that care whether it's on their website, or literature available online. If people want to hear from expert physicians, to delve into these areas. And, of course, going to your primary care providers to try and get more specific information is appropriate.

Living with Pancreatic Cancer

 Can you talk about what your relationship is to pancreatic cancer?

So I first became aware of pancreatic cancer a little over 24 years ago, when my sister, Joan Birsic-Dawson, was originally diagnosed with pancreatic cancer. And I come from a very large family, there were nine of us. And we had lots of accomplished people in the family. We had doctors and lawyers and Joan was the best among us. So Joan had a master's degree in pediatric nursing. And she would, in addition to being a mother of two lovely young girls, would volunteer time to go into the roughest neighborhoods in Pittsburgh, and take care of expectant single mothers and mothers who were single and had just had babies. And she did this on her own time. And she was just a wonderful person.

So when she was diagnosed with pancreatic cancer, it was a shock to all of us. We'd never heard of that. A doctor came out, told all of us that she had pancreatic cancer, and she ought to get her affairs in order, because there was really nothing that could be done. And it was really mind boggling and unbelievable to us. And so from that point on, the doctors in the group started exploring the credibility of the diagnosis and the prognostication as to the fact that there was nothing that could be done. And my wife, Patter who's nearly 100% Irish and very stubborn and got very angry and decided we all ought to do something. And we ought to file that. Get a foundation together, to try to raise money to make sure that there was something that was going on and could be done for other people that had a diagnosis of pancreatic cancer. And so, Joan, we found her a trial that was going on at Johns Hopkins. But she passed away. And that's when we got the foundation going full steam.

 Since Joan’s death, what steps have you taken for early detection?

 After being bugged, myself, by my wife, Patter, who was the co-founder of the National Pancreas Foundation, to get genetic testing for about a dozen years. And I ignored her for many, many, many years. Ignore that advice and ignore the advice of great doctors on our boards like Dr. Randy Brand. I finally realized that one of my adopted sisters, and my first cousin, got a genetic test and found that she had the BRCA1 gene mutation and advised me of that and that sort of turned the light on for me.

My grandfather, at age 92, died of pancreatic cancer. My sister died of pancreatic cancer. My first cousin had the BRCA1 gene mutation, which gives an eight-fold increase of risk factor for pancreatic cancer and for women gives a horrendously high-risk factor for breast cancer and for ovarian cancer.

So I decided to call up my good friend, Dr. Randy Brand and schedule an appointment, and found out that I had the BRCA1 gene. For somebody who was resistant for so long, I realized knowledge is power here. And one of the most stunning things about this, and I still remember to this day, about pancreatic cancer is that it's really hard stuff. It's a really tenacious, ferocious and hard cancer, because it sneaks up on you. And by the time you properly diagnose it, it's nearly too late. And so the statistics are really not with people once they get diagnosed. And it's like every cancer: The sooner you discover it, and you can detect it, the better off your odds are.

There's research now that confirms that you're better off knowing. And so early detection has been really important. And an important part of that is understanding your own genetics. After the “I told you” so’s, I decided to get the test. And then, I worked with Dr. Brand and his team to put together a package for all my siblings, and my nephews and nieces, including my own daughter. This is the gene mutation that Angelina Joli had, and you have to make decisions. And knowledge is power in all kinds of health. So that was my first early detection message.

It was great, because Dr. Brand's team ranged all over the country, the different centers where people could get tested and the package of materials and information. It was just really, really wonderful. And myself, as a result of coming out of that, I decided that I'm doing a yearly endoscope, and a procedure where they essentially put a scope there and look at your pancreas and figure out if there's anything going on, which is right now, the best we have, as I understand it.

 Why was genetic testing so important to you?

 Knowledge is power. And if you understand that, your best odds are catching this thing early. And if you understand, as we do, from our own personal experience in our family, that by the time people get diagnosed with this, so they'll feel a pain in their side, they'll think they have a gallstone. They go in, they get it checked, and pretty soon, you've got 18 months to live. That's the standard. Genetic testing tells your odds are much greater of getting this thing. And you need the impetus to be really tuned in to early detection that is really heightened when you understand both your genetic profile, and then you really have to examine what's available in terms of early detection. That's part of what the National Pancreas Foundation is really doing now is being a real information resource for people who are in this position. And where does one go for knowledge and for information? That's where we're putting a lot of our emphasis. And we're putting research dollars into early detection. And it's, it's really the holy grail for most of us that have been involved in this fight against pancreatic cancer.

 What hesitations dp people have when it comes to genetic testing? And what would you say to them if they do have hesitations?

 I understand the hesitation because, as I said myself, given my own family history, knowing my grandfather died of pancreatic cancer, my sister, Joan, died of pancreatic cancer, I was reluctant to just take that simple step to do the genetic testing that Patter had been encouraging me to do for five or six years before I actually did it. I just think human beings are wired, in some sense, to just say, leave well enough, alone, I feel fine. What good would it do me? I I'd rather not know. Those sorts of things. Oh, I did, you know, 23andme, or whatever that test was, and that didn't show anything? Those things create an inertia, a status quo of, “I'll put it off, I won't do it.” But it's such a simple procedure. And it you gain so much by doing it. If you don't have a genetic issue, that's great. And if it's not in your family, that's great. But that doesn't mean that there isn't something there lurking. And you might as well. It’s very easy.

 How can patients start the conversation about their family history of pancreatic cancer and making sure that they do get tested?

 I think that's a great question. It goes to another core mission of the National Pancreas Foundation, and that is awareness. People underestimate the mission of awareness, right? You say, okay, we principally want to raise funds for research into early detection and cures of pancreatic cancer and pancreatitis, but awareness is also important. This disease is a tough one. It sneaks up on people. It just comes at them out of the blue, right? And they don't want to think about that. Until it's too late. And it becomes a very tragic thing, right?

It’s good to understand what's been going on in your extended family. What are people suffering from? What if people died from it? In this day and age, especially with younger people today, with all the resources available and all the increases in science, it's been amazing.

Patient Experience with Early Detection

 What kind of questions should patients be asking when they're told of their pancreatic cancer diagnosis?

 One of the challenges is it's often a devastating diagnosis to patients and their family members; thye can be stricken with emotion and a lot of uncertainty. And it's a grim diagnosis for many. It matters a lot what stage the pancreatic cancer is at. That is one of the factors that determines management and, ultimately, whether or not cure is possible.

The goals of care are very important. What does someone want? And that, of course, is tied into how likely is it that they would benefit from treatment. And another important factor is what is their overall health. Sometimes if pancreatic cancer is occurring in somebody who has other chronic diseases, or if it's the case that the cancer has been detected at a very advanced stage and person has become quite poor in terms of their overall functioning, then the appropriate management differs very much. It may be just simply a question of supportive care. But it manifests very differently in each individual.

For many, it's been the case, historically, that often patients are undertreated, that the diagnosis comes along, and oh, gosh, it's pancreatic cancer and I don't want to die in pain, or I don't want to have a miserable end of life. And without appropriate questioning about what can be achieved in all likelihood, patients are often undertreated. That is including, for example, folks who may have less access to care, maybe sometimes minorities. That's what the literature would suggest that, although, we don't want to put people through unnecessary therapies that have minimal benefit. In fact, it's often the opposite, that patients will tend not to get as much care that can be helpful in improving their quality of life, improving their outcome, even with what is often in advanced disease.

It is worthwhile to ask questions about what can be reasonably achieved in the context of what the individual's goals of care are. And again, their overall performance status. So treatment is very different. If someone, for example, has a small, potentially stage 1 pancreatic cancer, those patients can have a five-year survival of 80%, and the majority of them would go on to be cured. And that very important to realize that, despite the grim statistics, to detect early is really significant.

Patients on the other end of the spectrum may have advanced cancer, depending on the nature of that cancer. In some people, those cancers may be very sensitive to chemotherapy. And we can understand that sometimes by the genetics, either sampling the cancer or to a certain degree by gene testing, they have an inherited mutation. That can sometimes suggest at least a significant chance that they might respond dramatically to therapy. Most people, of course, fall in between and they have a cancer that may be operable and that operation may have to start with chemo radiation. Maybe they're trying to figure out if that is worthwhile, and we do find that patients can achieve often good long-term survival, even if they have local cancers that may have just spread to lymph nodes.

There is still a lot to be done, and the trends have been some improvements in survival. If they have more advanced cancer, you know, what else can be done, because one of the concerns that patients will have is they're hoping that they won't have to suffer, they're hoping that things can be done to help them. And, if you go to the right centers, where expertise is available, patients can have symptoms treated, improving quality of life…There are therapies that can provide a lot of supportive care medications as well. So it's not just one conversation, because the first step of diagnosis is not only understanding where the person is with respect to their tumor, and what their overall fitness is, and what their goals of care, and then how are they going to respond, because they may be in care for several years, trying to do the best they can, taking advantage of emerging therapies and figuring out what their long-term benefits of therapy might be. I think it's an initial question about what the situation is, their diagnosis is at the beginning, but hopefully establishing a relationship and realizing that with appropriate care, a lot of patients can sustain a good quality of life.

 Would you recommend a patient to seek a second opinion?

 It is not unusual for patients to benefit from a second opinion at an expert center. It is a little bit of a judgment one has to take, because maybe you have to travel. But there is some medical complexity and sometimes the local care is not optimal for pancreatic cancer management. There are pancreatic cancer experts who do this all the time, and they're going to have some advantages. Even sometimes, whether a cancer is operable or not, that's a very fundamental question because that can set up significant differences in long-term outcome. Sometimes, a second opinion may be appropriate if the person is thinking about a clinical trial. So it'll be different for different individuals and what they wish to do. A lot of people want and really need to have care locally. But even then a second opinion can help guide local therapy. So it doesn't always happen that every time you offer a second opinion, of course, it is going to make a big difference. But we have multidisciplinary conferences, and it's a common aspect of that is that people are coming for a second opinion and sometimes it does change management for the better.

 Why are conversations with health care providers within the multidisciplinary approach so important?

 You can imagine if you have somebody who has been a pancreatic cancer nurse for a decade or more the invaluable experience that they would have as compared to somebody who isn't a general oncology service who sees a variety of patients. They're just going to be more expert on dealing with many of the symptoms and challenges and there is a lot of care that can be offered to patients that if the oncologist alone had to lead on everything, they wouldn't be able to do it as well. So often the nurses and other medical professionals, for example, mentioned about the genetic counseling and some in some centers that may be even handled somewhat by oncology nursing. But one of the things we encourage nowadays is getting a gene test to help decide whether or not your pancreatic cancer has run in your family, not only may that have impact on your care, but more importantly, it helps understand for your family members, whether or not they would benefit from getting a gene test themselves, because that can help them manage their own cancer risk. And so sometimes that's in the context of genetics, counselors, clinicians with genetics expertise, and sometimes even the nursing experts come in to that, depending on what your care is, has been, whether it's surgical nursing, or oncology nursing. There is a lot to offer. They provide pain management and nutritional care, all of these things come in the wheelhouse of the non-oncologist. It's not that the oncologist isn't very supportive of these things. These folks as members of their team, they want to be able to make decisions about targeting the cancer. So allied health professionals can be as important in ensuring long-term survival and effective communication about where their care is, as the oncologists themselves.

 What role does the caregiver play when it comes to starting these conversations with a multidisciplinary approach care team?

Well, caregivers have a tremendous role to play, not only in the management of cancer, but we've even seen some evidence that caregivers, if you're married, for example, you're more likely to have a pancreatic cancer detected early, like a stage 1 pancreatic cancer. And that speaks to the fact that caregivers are very good at helping to ensure that their partner follows through on cancer prevention screening steps, or if they present with symptoms that they go to the doctor early, even though sometimes patients present with symptoms of pancreatic cancer, they may already have an advanced cancer, but sometimes it is going to be a stage 1 cancer if they have access care and gotten a CT scan quickly.

What we found is that stage 1 cancers are seen more often in people who were married. And the assumption being that the caregiver may have been instrumental in some cases, and ensuring early access to care is not just the caregivers role. It's your insurance, and it's many factors, your education, but the caregiver is really vital, because, you know, patients can always understand where their symptoms are, and what opportunities there are, dealing with their symptoms, and knowing whether or not they should be getting a second opinion or many different aspects of care. We mentioned, it's not only about treating the cancer, and it's, you know, it's taking care of the nutrition, diabetes, pain and nausea and exercise. Any of these things require not only a team but a caregiver kind of helping the quarterback, everything.

 How can patients also talk to their families about their diagnosis?

 Talking to family members is vital because pancreatic cancer helps someone identify if they are at risk themselves, whether it's a sibling or a child, it's very common for us to meet somebody who all of a sudden wants to get their pancreas surveillance started because their their sibling developed pancreatic cancer in the last year. 

It's a sobering reality for them, but on the other hand, sometimes families don't communicate well, and they may not be always aware of their family history. So individuals with pancreatic cancer can help their family members by giving them that knowledge, that power. They may feel like they don't want to burden their family members, but they really are providing them with useful information about their cancer risk. Thankfully, most people with pancreatic cancer aren't going to be part of a campaign or a cancer family where it's affecting many individuals in the family, but it does. It does provide them with an opportunity to check so they may then go and get a gene test and while at least done my due diligence to make sure if there was something that I should know about if a mutation in a gene running in my family that I've checked it out, and you know, they've done whatever they can.

Starting the Conversation

 Can you give background on the National Pancreas Foundation and its efforts?

 So the National Pancreas Foundation was one of the first nonprofits that was created a little over 23 years ago, with the purpose of raising awareness in the community at large regarding pancreatic cancer and pancreatic disease, but with the real mission of not only raising awareness, but raising research dollars from the private sector to help fund young researchers and research efforts into pancreatic cancer and pancreatic disease.

We used to say pancreatic cancer was the fifth leading cause of death. People are becoming more aware of what a tough, hard disease this is. It was one of those orphaned disease that nobody really wanted to talk about, and nobody wanted to really think about it. And so it made it hard to raise money to fund research. And so that's why we thought when we got involved, that it was really important for us to structure the National Pancreas Foundation as a national organization. When we first were thinking about a foundation, some people can think very narrowly, and put their own name on it. But when you put a name like the National Pancreas Foundation, the idea in the model was to be more of a federal system where you would have different statewide chapters where people on a very localized basis, could have an impact in their own community, and come to the national platform for resources, and assistance, and help. And so that's kind of the way we've envisioned it in the way it's gone forward. And I think very successfully. You don't really start to understand something until you put a name on it and then you start talking about it. And you wake people up to what resources and help is potentially out there, if they're unfortunate enough to encounter this disease in their family.

What is your mission in the pancreatic cancer space?

Our mission in the pancreatic space for the National Pancreas Foundation has several missions. At one point in time, our focus was on really addressing the cure rate. We have a great team of doctors in the National Pancreas Foundation, who know all the statistics. The statistics were bad, somewhere like 95% or 96% of people who were diagnosed passed away from the disease within a short period of time, within two years. And we had a goal at one time of really focusing on increasing that survival rate, start bringing it up a percentage. And I think right now, we're close to 10% survival rate. People don’t think moving from 94% to 90% is good, but they should talk to the 4% who are now alive today because of the research that has been supported in large part by the National Pancreas Foundation and other nonprofits in the same space.

And right now, I think that our mission is focused on pancreatic cancer, increasing the survival rate. We also have a very big focus on early detection and really trying to get people sensitized to the fact that early detection is really important. It really helps to increase people's survival rates when they are diagnosed early. We're a little bit unique, the National Pancreas Foundation, in that we not only have a focus on pancreatic cancer, but we also have an intense focus on pancreatic disease, in general, such as pancreatitis, and particularly a pediatric pancreatitis for young children who are impacted by that terrible disease as well. Our mission is broad, and we fund lots of research grants each year. That's a real important mission of ours from the very beginning. We run the organization, very leanly. We have 93% of every dollar that's contributed to the National Pancreas Foundation goes into programs and research.

How can patients and family members learn more about the National Pancreas Foundation and how can they get involved?

 Learning about them is as easy as going to the website, which I think we, in more recent years, have done a very good job of having a very good website, and exploring that website. And then reaching out to people at the national level. As I indicated earlier, we see ourselves as more of a federation as it were, because we have about 30 statewide chapters now. And those chapters are very much a reflection of the hard work of people in their own communities, and connecting with their own communities, connecting with nearby hospitals, and encouraging those hospitals to become centers of excellence, under the standards that are set forth by the National Pancreas Foundation. People want to connect in their own communities. And that is a very important mission of the NPF.

Right, we're not a top-down driven organization, we provide knowledge, resources and information at the national level, and hopefully support the good work of our chapters in their local communities. And that's very important because most of this is community-based. So if somebody has someone who's afflicted, and if you can get that person information, and you can raise awareness and you can help that person, get to the right physicians get to the right center, and get good nutrition information, which is on our website, and get good patient support. All of that is really critical and when you see people get involved, it's empowering for people to get involved in their statewide chapters. And if there isn't a chapter, start one, and ask us how they can start and get support from our great staff and team to have a local chapter. I find that so rewarding.

To bring it all together, why is advocacy and awareness around pancreatic cancer so important?

I think that it really goes back to what I said before, and that is knowledge and awareness is power. It's empowering for people. And I think that the worst feeling in the world is when a person is diagnosed out of the blue with this disease or has a family member that's diagnosed with this disease and feels powerless. That lack of power, and that emptiness is palpable, in my experience, with this disease. And, you know, I can't tell you how many people over the years have contacted us…That is what awareness does, it empowers the patient. And it empowers the patient's family, for the tough fight that's ahead. And it is a tough fight. There's no doubt about that. But it's like all fights, you know, it's going to be a tough fight. And you've got to arm yourself up with knowledge and awareness at the earliest moment, and I think that's the value of advocacy and awareness. Advocacy for us at the NPF we're very involved with the federal government, the NIH. We can raise more funds and can direct funds in the right places a lot better. We will try to raise millions of dollars. The federal government can direct millions of dollars to the right research programs into the right places. And one thing the NPF does is get very organized in that regard. And we've got one of our co-founders and others within our organization who are really well placed. One thing that I always called the secret weapon for the National Pancreas Foundation over the years was that we have some of the best doctors in the world on our board…And even though we were a smaller organization, we didn't have as much money that gave us the critical edge of those doctors understanding what was going on in the pancreatic cancer field, and in the pancreatitis field, and directing our research dollars in the right place. It's like betting on the right horse is so important, and being able to provide what we call seed funding for key researchers who can then go on, once they get the grants from us, and go to the NIH, and get really big money that will allow them to go on and prove their research and prove out their theory. So, advocacy is really important. It's an important part of the mission of the NPF.

Living With Pancreatic Cancer: a Patient and Provider Perspective | CURE^® Speaking Out

Emerging Early Detection

Living with Pancreatic Cancer

Patient Experience with Early Detection

Starting the Conversation

Raising Awareness

Latest News

Living With Pancreatic Cancer: a Patient and Provider Perspective | CURE® Speaking Out

Emerging Early Detection

Living with Pancreatic Cancer

Patient Experience with Early Detection

Starting the Conversation

Raising Awareness

Latest News

Living With Pancreatic Cancer: a Patient and Provider Perspective | CURE^® Speaking Out