Chasing Cancer

Opening Remarks

JENNIFER LEE: Good afternoon. I'm Jennifer Lee, Director of Events for The Washington Post. Thank you for joining us for today's program "Chasing Cancer." We're thrilled to be here in Boston, home to many of the nation's most renowned cancer centers and hospitals. Today we have gathered leading medical and technology experts to highlight the latest advancements in cancer detection and treatment. We'll also hear from two Boston icons, Mayor Marty Walsh and President and CEO Emeritus of the Red Sox Larry Lucchino about how surviving cancer has shaped their lives.

Before we begin, I would like to thank our presenting sponsor, Amgen Oncology, as well as our contributing sponsor Friends of Cancer Research.

And now I would like to welcome to the stage my colleague Paige Winfield Cunningham, Mayor Marty Walsh, and Larry Lucchino.

Boston Strong

MS. WINFIELD CUNNINGHAM: Well, good afternoon. I'm Paige Winfield Cunningham, a health policy reporter at The Washington Post and author of the Health 202 Newsletter. And I'm delighted to be joined by Mayor Marty Walsh and Larry Lucchino, president and CEO emeritus of the Boston Red Sox, two men who really need no introduction here in Boston.

Before we begin our conversation, I want to remind our audience that you can tweet your questions for our guests using the #PostLive, and I will be happy to relay them.

Mayor Walsh, let's start with you. Many known you were diagnosed with Burkitt's lymphoma at age 7. And I would love to hear just your personal experience as such a young child. What was that diagnosis like?

MAYOR WALSH: I was diagnosed in 1974. I had Burkitt's Lymphoma. Before we knew what we had, my parents knew what I had, I was tired all the time. I wasn't active. I'd come home from school and just lay on the couch. And my mother took me and my father took me to the children's hospital. And first time I went there, they sent me home. They thought it might have been appendix. And the next night I went back in pain. They did emergency surgery, they opened me up. They saw that my stomach was loaded with cancer. They closed me up.

And they gave my parents a couple options to, one, take me to Ireland to see my grandparents to kind of basically say goodbye, or we'll try this new form of treatment which is not radiation but chemotherapy and other drugs. And I remember it pretty vividly. At the age of 7, you don't know that you have cancer. You don't know that you're dying or potentially dying. All you know is that you're a 7-year-old kid and you want to do what other 7-year-old kids did. Although my experience from November '74 literally for almost four years was a lot of doctors' visits and appointments. I had radiation. I had chemo. I lost all my hair. I had obviously the surgery, just to do exploratory surgery. I had the spinal taps and the bone marrows, all the things that you do as a patient.

And at the time, I don't think when you're younger, you don't realize what you go through. But as you get older and realize what you experience as a child, it helps you basically define who you are and understanding what perseverance is and things like that.

MS. WINFIELD CUNNINGHAM: Do you remember a particular moment at which your parents told you that you had a really serious illness?

MAYOR WALSH: You know, I think it was the first time I went to the hospital. You know, when they keep you over at the hospital and then the treatments. The chemo was tough. Back then, it was in a bottle and it was yellow. And I remember having that and getting very sick after the chemo and starting to lose your hair, and understanding what that's all about, and just the drawing of the blood and things like that that happen. As a little kid, you're not really prepared for that in life. And looking at it afterwards, the impact it has on the family, we talk about cancer can be a family disease. Particularly when you have a young child that's sick, it does affect the whole family. I had one brother, he was at the time three and four years old. And it just has a big impact on the family.

MS. WINFIELD CUNNINGHAM: So the doctors initially told you you had six weeks to live, and then what happened? You went through all the treatments.

MAYOR WALSH: Yeah, they gave us a very little time because of the aggression of the disease. My mother and father both said--

MS. WINFIELD CUNNINGHAM: And it's known to be the fastest-growing type of tumor. Is that correct?

MAYOR WALSH: It was, yes, at the time. And at the time the survival rate was 30 percent. And today the survival rate I think is 90, which is incredible. But a lot of the drugs that I had were experimental. I don't have all of the names of them. But it was really focused on--I had 22 days of radiation. I still have tattoo marks on my chest from lining me up. Back then, they used to line you up with the machine so you'd have the dots on there. And I had 22 treatments there. I'm assuming they shrunk the tumor. And then the chemo and all the other drugs that went in and attacked the cancer that I had. You know, just going through that, as I said, when you're 7 and 8, you don't realize how sick you are and you don't realize that. I mean, my mother and father never said to me you could be dying. They just--I had cancer. And as a kid, you're tough about it. You kind of go in there.

And I told a story the other day, I remember one time Bobby Orr was coming to visit the hospital. You know, Larry's going to speak in a few minutes. The impact that ballplayers have and hockey players and football players have going to visit kids makes a big impact. And in 1974, Bobby Orr was a big deal in Boston. He was like the Tom Brady of hockey, right, of football.

And I remember I was in the hospital about 40 days straight. And I was being let out this one particular day. And of course, they let me out early. And usually I'm happy about going home. And Bobby Orr was coming. And we waited around a few hours, and my mother finally said we had to go. We walk into the elevator, hit the button, the door opens and there he is. It was just amazing.

And you just think about, as a kid with cancer, and particularly that age that I had it, you don't think about the disease. You don't think about the impact. You go through what you have, and it's difficult, obviously. And the things that I remember, the spinal taps and the bone marrows that we had to do and laying there for an hour. It's all changed now, the way a lot of this stuff is done. You know, it was tough. It was cruel, probably, in terms of what they do today. But again, the doctors and nurses at that particular moment were learning about the disease. And the fact that I'm grateful, obviously, that I survived and lived through it, but I'm also grateful that I was part of, I guess you would say, being experimental on certain things to see that families today can have better treatment that they don't have to go through it.

You know, I go back Dana-Farber a lot now. I love the Dana-Farber in the sense of it saved my life. And there's a woman who works there. She might have retired last time I went over. And her son died at Children's with cancer at the same time I survived, so every time I saw her I thought about her, talking about what she went through and how my parents had a whole different experience. And the work in Boston--I think somebody said on the way in--we're blessed to live in this city. We have great medical institutions between children's hospital, which I was at yesterday. They built a bridge over the way to get in there. Between Children's and Dana-Farber for kids and well into adults. And then we have these other great hospitals, Mass General, Brigham and other great hospitals in the city. We're really fortunate.

MS. WINFIELD CUNNINGHAM: Larry, you had a similar kind of grim prognosis when you were diagnosed with Non-Hodgkin's Lymphoma in 1985, and I think you were given a 30 percent survival rate. Can you talk about that time in your life and how you felt when you received your diagnosis?

MR. LUCCHINO: Yeah, Paige, may I make one point first? Both the mayor and I have a lot in common in terms of our experience from one type of lymphoma that he had, another type that I had. There are lots of different types of lymphoma, as there are lots of different types of cancer. But we represent long-term survivors, a group that is growing exponentially these days. He's been out 46 years from the beginning of his treatment. For me it's 34 years. We are both long-term survivors. And I think the people who are watching should realize that that fraternity, that group of survivors is growing dramatically.

I remember seeing something that there were 3 million people in 1975. There are something like 15 million now. In another 10 years there will be something like 18 or 20 million. So it is growing significantly, and that should tell you some good things about the cancer research and treatment that is going on.

But when I was treated, I'm a superstitious baseball executive. I should have known something was wrong. And I was diagnosed on Friday the 13th. So I remember that date vividly. I was in my late 30s. I was feeling healthy and full of energy. I was working for the Baltimore Orioles at the time.

And there was this thing about this nagging cough that wouldn't go away, and I'd just came back from a motorcycle trip in Europe. And I kept coughing over there. So I went to see a doctor and he diagnosed me with B-cell Non-Hodgkin's Lymphoma. I couldn't even spell it at the time, let alone understand what it was.

It was devastating. I was the first of my cohort group to experience this kind of diagnosis. Like the mayor, I also spent 40 days in treatment. Like the mayor, I had a bone marrow transplant. I was the beneficiary of some important experimental treatments that led to my recovery.

I had a relapse during the course of my chemotherapy, and I was told that that was a particularly adverse event and that my probabilities of survival had shrunk considerably. So I went on. And Dana-Farber, an institution that the mayor spoke of reverentially--and I do too--came up with a younger doctor with a new modality, and he applied that to me. It included the bone marrow transplant that I referred to. I went in with two good friends, or two friends, I should say, at the same time, and I was the only one who survived the treatment. But what it did do for me is temporarily change my whole perspective. It permanently changed a part of my perspective in ways that I think the mayor could resonate with as well. The experience is profound. And if it is well-delivered by loving people, if you feel a sense of community and family support, you're never the same again.

MS. WINFIELD CUNNINGHAM: What are some of the specific ways your outlook on life was changed? Did you view relationships differently? Did you view your career differently? How did you feel about it?

MR. LUCCHINO: Well, it's very hard to articulate it without sounding a little corny. But I didn't want to recover and to go spend time on a beach and relax and sort of enjoy life. I wanted to recover so I could get back to work. I was a hard-driving, by my lights, working person, and I thought I just wanted to get this behind me so I could get back to work. But the effect it had on my view of friendships, my view of work--I mean, after all I'm a baseball executive. I work in the tour department of life, and this was something that was much bigger and different and more profound than all of that.

MS. WINFIELD CUNNINGHAM: I'm sorry, I was going to say you have said that you had an all-star team helping you in your battle with cancer. Who was part of that team?

MR. LUCCHINO: I did. Well, we had a family meeting to decide where I should go for treatment. Remember, as I said, I was in Baltimore and Washington at the time. There are lots of wonderful options down there. But my family vote was I think nine to one. I was the only person who voted to come up to Boston and go to Dana-Farber as opposed to staying in Baltimore at Johns Hopkins, or Washington at the NIH. We didn't count votes in my family; we weighed them. And I thought that my vote weighed more than my mother's and my father's and everybody else's vote, and so I came up here to Dana-Farber.

My first contact with Dana-Farber was at 11:30 Friday night. I mentioned that I diagnosed on Friday. I was put in touch with a man named Emil "Tom" Frei. He was the physician-in-chief at Dana-Farber. And 11:30 at night I had the audacity to call him, and he talked to me from 11:30 at night until after 1:00 in the morning that day. He was in his music room trying to calm down from a tough week of work at the clinic. And I was so impressed at his warmth, at his availability, at his concern, his level of empathy, that that was all I needed. Anyway, he was my doctor through the first stage of the process.

And the great thing about certain cancer institutions is that they always have a Plan B. When my chemotherapy did not work, they decided that a bone marrow transplant might be desirable. I was like the 30th person, I think, at Dana-Farber who had it. And I was passed off to a guy who still's a lifelong friend of mine. My oncologist after that was a guy named Lee Nadler, who still works at Dana-Farber. And he gave me the bone marrow transplant that ultimately--well, that was followed up with radiation as well. And although I thought that I was going to have a series of relapses--along the way every time I had a cold I expected that there was something wrong with me--you know the feeling there, don't you--but I've been lucky not to have relapses. It's been about 12,000 days--I once counted the days--since that early treatment. And I've been through a lot in baseball, four World Series championships since that time. We came up with a good idea for Camden Yards in Baltimore. Just pleasant times on the couch watching television with my wife. The fun of spring. Just my perspective changed on a lot of little things that I tended not to notice.

MS. WINFIELD CUNNINGHAM: Mayor Walsh, you've talked about how your Catholic faith has affected you. How was it particularly affected by your cancer?

MAYOR WALSH: Well, I think a little bit what Larry said, not to sound corny, but when you really think about it after a while, you start to wonder why are you the one that was cured and why not the boy next door or the girl or what have you. And you have to think that way.

And I know my mother prayed a lot when I was sick and promised that if I survived she would take me to Lourdes in France, and St. Anne's in Quebec, and the Knock Shrine in Ireland. And I went to all those places. And we had a lot of holy water through the Walsh household. We still have a lot of holy water through the Walsh household.

But I think that to that point, as Larry talks about being a hard charger, I'm a hard charger. It's like I'm not sitting back, like you said, enjoying the beach. And when you think about it, if you look at someone who has survived cancer, a lot of times that person has a drive afterwards, too. And that drive is to do whatever it is they want to do. They don't just simply have the cancer and go into remission and say, oh, my god, life is great and relax and retire. There's a drive there. And I don't know if that is just that's who we are as people. I haven't really put a lot of thought into it.

When I was a kid, again, when I was 12, 13, 14 years old, they didn't think about it. I just know that I had to go to the doctor once a year or once every five years at some point. And I think for the first five years after remission it was every year, and then it was every two years and then every five years, and don't think much about it. Thinking now as I'm older, I think a little more about if I have a cough or something going on, it's like a vague thought in the back of the head and you just don't want to. And from my doctor, I talk to my doctor a lot. The side effects of what the drugs I had when I was a kid--I mean, there's side effects. And he's checking them all out to make sure they're fine, but I'm not worried about that today.

And to Larry's point, my parents didn't have an opportunity to call Dana-Farber. Just the fact that they grew up in Ireland and they met here and they got married, had two boys, and I got sick in Boston and they took me to Children's Hospital. And next door to Children's Hospital is the Jimmy Fund. And it was the old, old building then. It was a little corner. It looked like a health canter. And I went into the building and then moved across the street. And just the fact of being placed in the city, there was really no decision in our family.

And they treated us amazing, and that's why I think, whether it's the mayor or not the mayor, I want to make sure the Jimmy Fund, the Dana-Farber, and Children's, all the other hospitals are successful, because there's so many people--I was at Children's yesterday and I was just looking at the faces of the parents. And I see little ones with no hair and walking around and the IVs in the arm, and I'm just thinking like the pain that these families are growing through. But their kids and their children are in the best place in the world.

MS. WINFIELD CUNNINGHAM: Well, that's a good segue, because, Larry, I wanted to ask you about the Jimmy Fund, of which you're chairman. Can you tell us a little bit about the charity and your work there and how you got involved?

MR. LUCCHINO: Well, it is the--I mean, this in the finest sense--the people's charity in Boston and this part of New England, and it's spreading its tentacles even wider into the rest of the nation. It was started in 1946. The Red Sox have been part and parcel of the Jimmy Fund for about 67, 68 years, something like that.

And it's something that affects everybody in this community. People care about the Jimmy Fund. People care. It's not to say that they don't elsewhere, but it's part of the DNA, up here. Maybe it's the good hospitals. Maybe it's the proximity of these inspiring stories that we know and hear from people.

But the Jimmy Fund, it's a fundraising arm of the Dana-Farber Cancer Institute. It was focused primarily on pediatric cancer. It's now focused on pediatric and adult cancer. And it is a great institution supported by not just the Red Sox but all of the sports teams in New England. And we are fortunate, as the mayor said, to both live in Boston with these hospitals and to live in Boston with the Jimmy Fund. It's constantly pushing the envelope, providing new money that creates new ideas that creates new treatments that creates new success stories and new survivors. And we are lucky to have that here, and the Jimmy Fund personifies that.

MS. WINFIELD CUNNINGHAM: As cancer survivors, do you watch the developments in oncology and in cancer care, and are there any particular developments that excite you?

MR. LUCCHINO: Well, certainly the decline in death rates of most cancers. We're at a major moment. I get to talk to doctors and administrators at Dana-Farber a lot because of my position with the Jimmy Fund, and they will reflect a kind of excitement at where we are in the process, that they've learned more about cancer in the last 10 years than they learned in the previous 200 years. And the death rates are going down. The treatment modalities are differing from person to person. There is individual cancer treatments being focused. There is the personal immune system that is being armed to treat cancer. There are just tremendous new developments, and that comes from bright minds but it also comes from generous people.

MAYOR WALSH: And I'm proof of that in the sense of seeing the survivor rate up to 90 percent. And what I had was predominately childhood cancer, but adults have it, too. Joe Andruzzi, former New England Patriot, had it Burkitt's Lymphoma, and he's in remission today. And I just think that it's amazing to see, whenever I get a chance to go to a Jimmy Fund event, I hear the president, whoever the president is talk about for the walk--they do the bike ride every year--and just hear they bring up this riff on the cancer immediately. Every year they talk about something they're working on, and the treatment is an amazing piece of that.

Let me say one other thing before we end. I know we've got a few minutes, a minute here or two. I want to thank The Post for hosting this. I think it's important to have conversations around this. And I know that people watching this--and not everyone had the experience Larry Lucchino and I did with Dana-Farber, by living, unfortunately. People lose their life and their battle to this disease. And another thing I want to say to those families that are listening, that, you know, in some way, thank you because your loved one is not a stat. Your loved one is an opportunity for doctors to learn from, an experience on how to battle back this disease. And if that brings any family any solace, I just want to pass that onto them.

MR. LUCCHINO: There is a kind of circle that one goes through. You may start out as a frightened patient, but the ones who are lucky enough to survive tend to round out the circle and stay active, as the mayor and I have stayed active since our treatment, our diagnosis.

MS. WINFIELD CUNNINGHAM: Well, your birthday is on Friday, your 74th birthday, if I'm right. Back in 1985, did you think you'd live to see this day?

MR. LUCCHINO: I didn't, actually. I did not. I had a 30 percent chance of survival, which they told me was good. And then when I relapsed, of course it became less than that.

MAYOR WALSH: We never would have won the World Series.

MR. LUCCHINO: That's right, or go to Camden Yards, or done a lot of great things.

MS. WINFIELD CUNNINGHAM: Well, Larry, we can't let you leave without one baseball question. I know it's an uphill climb, but do you think the Red Sox will make the playoffs this year?

MR. LUCCHINO: Boy, that's an unfair question.

MAYOR WALSH: It is.

MR. LUCCHINO: I say that only because I don't. I think that the hill is probably too high. It's 5 1/2 games with about 24 left, and it's probably a little high. But we're here to say that strange and unusual occurrences do happen.

MAYOR WALSH: We should have won last night.

MR. LUCCHINO: So it's possible. Every game matters. And here it is in early September and we're playing meaningful games in Fenway. So we tend to be spoiled now that we've eliminated the 86-year-old Curse of the Bambino. And we want to get to the post-season every year. But playing meaningful games in September is I think a real compliment to the players and to the organization.

MS. WINFIELD CUNNINGHAM: Well, unfortunately, that's all the time we have this afternoon. Mayor Marty Walsh and Larry Lucchino, thank you so much for sharing your remarkable stories with us. Please stay seated for the next portion of our program, and I'll be back with you after this short video.

Controlling Cancer Pain

MS. CUNNINGHAM: I'm Paige Winfield Cunningham, and we're talking about controlling cancer pain now with Dr. Mihir Kamdar, of Massachusetts General Hospital;

And Dr. Robert Jason Yong, from Brigham and Women's Hospital.

We want you to join our conversation. Please tweet your questions to us using the hashtag #PostLive.

So, let's get started. Dr. Kamdar, pretend that I am five years old. Can you explain to me what causes cancer pain?

DR. KAMDAR: Well, that's a good question. That's why I don't do pediatrics.

MS. CUNNINGHAM: Perfect.

DR. KAMDAR: But what causes cancer pain--about 75 percent of cancer pain actually comes from the tumor itself, pressing on sensitive structures, around nerves themselves.

But what a lot of people don't realize is that another 15 to 25 percent actually comes from the things that we're doing to actually treat the pain--sorry, treat the cancer, rather. So, things like radiation side effects, chemotherapy side effects, post-surgical pain. And then, pain just being a very common thing that we see in medicine, people who have cancer can also have non-cancer pain. So, that's another important consideration. When we're seeing patients who have cancer and have pain, we need to sort of think broadly about what could be causing it so that we can have targeted and effective therapies to treat it.

MS. CUNNINGHAM: So, when we're talking about specifically the part of pain that's caused by the cancer itself, how have patients described that to you? What are the things you hear, Dr. Yong? What do you hear from patients?

DR. YONG: So, it's very similar to the pain that they feel from chronic and acute pain, as well.

So, when we think about pain, we think about acute pain being in the first 7 to 21 days, and then we have the chronic pain, which is non-cancer-related, and then cancer-related pain. So, those are the kind of three buckets that we think about, when we think about pain.

Within the cancer pain bucket, the pain is often sensed in the same way. So, it can be aching, burning, gnawing, throbbing. It kind of depends on where the pain is coming from and what is causing that.

And if it's related to the chemotherapy agents, for example, then it may be a little bit of a burning, kind of raw feeling that they have. And the descriptions are analogous to the patients that we see with chronic, non-cancer pain, as well.

MS. CUNNINGHAM: Okay. And what types of cancer do you see patients complain the most about when it comes to pain? Is it possible to--I mean, I'm sure all cancer does lead to some pain, but are there any that are worse than others?

DR. KAMDAR: That's a great question. And a lot of actually depends on where the cancer is.

And so, the most common cancer pain syndrome we see is bone pain, and that's oftentimes from cancers that arise in other parts of the body, breast cancer, lung cancer, that go to the bones. But again, it really just depends on where the cancer is actually arising.

And again, the pain can also be from the treatments that we're doing to try to target the cancer. So, what it means is we have to take a very individual approach when we're seeing patients that are dealing with pain.

And I'll just sort of add to Jason's comments when you asked about how do patients characterize pain. You know, I think one thing to think about pain is we sort of define it as a sensory or emotional experience associated with tissue damage, but I think understanding that it is a sensory, emotional experience and it's not just about the physical pain, it's all the other layers of pain, whether it's spiritual, psychosocial, the anxiety that comes from just dealing with cancer, in general, and then you add pain on top of that, that creates something that we refer to as "total pain."

And so, what we try to do is try to think about how do we address each element of that pain experience that patients are, you know, dealing with, not just the physical, but the emotional and psychosocial, as well.

MS. CUNNINGHAM: I know many of us have been on the patient side of this, and I've heard a lot of complaints and just people sort of making fun of this kind of 1 to 10 scale that you'll often get from doctor. And they'll say, "Where's your pain? Is it a two? Is it a five?" And you're thinking, you know, "Can I imagine worse pain? Yes. Where do I rank this?"

Do you think that's an effective way of getting patients to describe their pain, are there better ways, and what are the challenges with that?

DR. YONG: Yeah, there are a lot of different ways that are validated and more objective to be able to quantify a patient's--and qualify a patient's pain.

We use the numeric rating scale, or the faces, as an almost quick-and-dirty way, just to get an assessment that we can compare to other patients.

The more validated ways are looking at their functionality and also their quality of life scores and impact that it's having on that patient.

So, pain is so multifactorial that we have to consider how, like Mihir said, the impact that it has on the patient's total body and total life.

MS. CUNNINGHAM: So, you're saying that's more validated, because if the patient says, "Hey, I'm not getting out of bed," that might be more telling than if they just give you a number?

DR. YONG: Exactly.

MS. CUNNINGHAM: Is that the idea?

DR. YONG: Yeah.

DR. KAMDAR: I think we've seen patients who have broken arms and they have 2 out of 10 pain and if I stub my toe, it's 20 out of 10 pain.

And so, we have to think--to Jason's point--we have to think more three dimensionally about how pain impacts patients' lives in order to actually improve their quality of life.

And so, the question is, oftentimes, okay, "What is the pain preventing you from doing that's in important to you in your life? What are those things that give you meaning and value and how do we make sure whatever we're doing to target the pain is allowing you to do those important things as you go through your cancer treatment?"

MS. CUNNINGHAM: Right. Yeah, I see this with my own kids. They'll, you know, complain about a terrible stomach ache, but then they still want dessert. So, you're like, "Really? I don't think"--

DR. KAMDAR: Right.

MS. CUNNINGHAM: So, pain, of course, is a common experience for cancer patients, and I read that one in three cancer patients don't receive medication appropriate for the intensity of their pain. And according to the World Health Organization, 20 percent of all cancer patients die with unrelieved pain.

What are the consequences that you see for patients when their pain is not managed well?

DR. YONG: Yeah. So, it can have a tremendous impact on their psyche, and their physiology, as well. So, we see physiologic changes with uncontrolled pain.

So, when we're thinking about try to control a patient dealing with cancer pain, it takes a village to help these kinds of patients.

And so, it's the mantra of pain management in general, but especially with cancer pain, is multidisciplinary, multimodal approaches.

And so, that village includes the surgeons, the oncologists, the radiation oncologists, the palliative care doctors, the psychologists, psychiatrists, and eventually pain physicians, as well, in trying to create their different modalities to help knock the pain down piece by piece.

DR. KAMDAR: You know, we oftentimes say no one person can tend to the complex needs of patients dealing with cancer. And that's really we worked apart and together as an interdisciplinary team to try to address all those layers of suffering that can come with cancer pain.

MS. CUNNINGHAM: I've got a related question from Twitter. They ask, "What kind of painful side effects do cancer patients live with after they enter remission, and what is the long-term plan for treating this kind of pain?"

DR. KAMDAR: That's a fantastic question. As you heard earlier, we're in a new area of oncology, where folks are living much longer and we're seeing survival curves--we don't actually see the tail of it, which is wonderful to see.

And what it means is that somewhere around 15 million people are in survivorship, but up to 30 to 50 percent of them are dealing with pain.

And so, you know, part of it is addressing, again, the specific cause of pain. So, people that have neuropathies--Jason was referring to nerve pain from chemotherapy, which targets the cancer, but can get some of the bystander cells like important nerve cells. So, they can get burning pain in their feet.

And when they're trying to get back to work and get back into the usual tracks of life when they're in survivorship, that can be really challenging.

And so, part of it is dealing--is trying to help folks get through treatment but also making sure that we're helping them get into a place of survivorship where they can be functional and can do those important things that matter to them.

MS. CUNNINGHAM: So, let's talk about types of pain management, then. So, we of course have a range from minor pain and then moving to opioids more when you get into moderate to severe pain.

Can you talk a little bit about kind of the range and what type of management is used most commonly?

DR. YONG: Yeah, absolutely. So, within that multidisciplinary, multimodal approach, within the specialties that deal with pharmacology, or medications, we also enact a multimodal approach to the patients.

So, we throw different classes of medications, opioids being one of those options, but not typically a first- or second-line agent. We'll often do the anti-inflammatory medication, such as the Motrins and Tylenols. We'll do anticonvulsants to help with some of that nerve-related pain. Some of the anti-depressants at low doses can help a lot with these nerve-related pains, as well. And then, we have a whole slow of local anesthetics and other adjuvants that we can use to try to, piece by piece, knock that patient's pain down, to make them more functional and improve their quality of life.

Opioids being one part of it--and it's a big piece that's getting a lot of attention. A lot of people treat it as a unimodal therapy and just escalate it beyond what is oftentimes standard of care for some of these other patients.

With cancer pain, it's considered in a separate bucket. So, if you're dealing with active cancer pain, it's separate from that question, then we have more leniency in trying to manage that patient's pain with opioids, and with all the other medications, as well. So, we're willing to kind of escalate it beyond where we would with other patients that deal with just regular, chronic pain.

MS. CUNNINGHAM: So, you're absolutely right, the doctors have been getting blamed a lot recently for overprescribing opioids.

When you hear those criticisms, do you feel defensive, or do you think, "Yeah, we should be criticized for that"?

What do you think about, you know, back in the '90s, this idea that pain should be paid attention and treated to--treated as well with other symptoms--was it too much?

DR. KAMDAR: That's a great question. You know, I think that every doctor or nurse practitioner or nurse that I know that goes into this field is there to try to help people.

I think clearly if folks had sense of the data that we know now, I think people would have thought very differently, a lot more cautiously about applying--what happened was people applied the WHO stepladder that we heard about where we use the opioids for moderate, severe cancer pain, where there's actually good data for that, to chronic, non-cancer pain.

And what we saw was a bit of--not even "a bit," it was a catastrophe. And underlying that, now when we look at the data, we actually see that, when we look at the population studies, the data for using opioids for chronic, non-cancer pain is pretty flat after a couple of months. It's not to say that there aren't patients, select patients, who are low-risk who do well with them, they've exhausted everything else.

When we look at cancer, for whatever reason, opioids seem to be much more effective. And around 50 percent of patients with cancer-related pain will need to be on opioids to be able to manage their pain and be functional.

So, the question is, from the lessons that we've learned from the opioid epidemic, how do we make sure we're caring for patients with cancer pain, if they need opioids, safely and effectively and in a structured way, while also maintaining access for those patients who really need it?

And how do we find--I think, to me, it's always about finding the risk and benefits and that balance, which isn't always easy to do, but I think we've come a long way in that.

MS. CUNNINGHAM: What are some questions doctors should be asking themselves or their patients when they're trying to decide, "Is this a patient that really needs an opioid," versus, "This patient maybe could try some other routes"?

DR. YONG: So, like Mihir was mentioning, it's a risk/benefit ratio that we have to weigh with every patient, and every patient is individual and their situation is different.

And so, as we individualize therapy and try to target therapy for that specific patient, we weigh the risks and benefits of how opioids would fit in the multimodal therapy regimen for that patient. But then, also, if the risks would outweigh the benefits, then we wouldn’t necessarily consider it.

And so, we're constantly weighing what we think the benefit and risk is for that specific patient and their modality and what the specific reason for their pain is.

MS. CUNNINGHAM: Do you--sorry.

DR. KAMDAR: I was just going to add, you know, if we follow the WHO guidelines or the NCC and the national guidelines on all cancer pain, for patients that have moderate to severe cancer pain, that's when we start applying opioid therapy.

But to Jason's point, we want to make sure we tried all the non-opioids, as well, and then we continue to titrate those.

The thing that I'll add, and maybe work talking about later, because it's relevant to what Jason practices, people have talked about adding a fourth step, which is minimally invasive intervention step. So, thinking about nerve blocks, being able to administer pain medications right to the spine where all the pain nerves coalesce and then get sent up to the brain.

And so, how do we think about those--

MS. CUNNINGHAM: And those would be approaches with less addictive, less side--fewer side effects.

DR. KAMDAR: Exactly, exactly. Because even in patients who are at low risk for opioids, they can cause a lot of side effects. And so, if there's ways for us to control the pain using other means that allows them to be more alert, more functional, perhaps tolerate their cancer treatments better, then we ought to be thinking globally about how do we maximize all of these different tools in our armamentarium.

MS. CUNNINGHAM: Do you hear patients expressing more concern about taking opioids, just because they heard so much now about the crisis nationwide?

DR. YONG: Yeah, absolutely. I think it's on the top of a lot of people's minds in trying to reduce the risks of the opioids.

And we think about the interventions that we're able to perform on these patients to help reduce their pain, we think about single interventions and continuous interventions.

So, single interventions may be a nerve block or even an ablative nerve block where we put alcohol to kill some of those nerves that are causing some of that pain; whereas the continuous ones, maybe with electricity that we're delivering to the spinal cord or the nerve roots, or even medications that we're delivering into the spinal fluid, where the nerves are very sensitive. And we can get by with tiny amounts of medication that have equal effect but less side effects.

MS. CUNNINGHAM: Where are we on those developments? Are those approaches that are available now to patients, or growing in availability?

DR. YONG: Yeah, they're fully approved for cancer pain patients.

And when we look at the intrathecal pump literature, we see that a lot of the patients do extremely, extremely well and have reduced side effects as a benefit.

MS. CUNNINGHAM: Do you see colleagues, your doctor colleagues, becoming more hesitant to prescribe opioids? I mean, do you feel like the pendulum has swung a little bit too much in the opposite direction?

We're now--you know, I've read reports of cancer patients being made to feel stigmatized for asking for this kind of pain relief.

DR. KAMDAR: Yeah, I think--again, it's a balance. I think a lot of the interventions that have come into play sort of on the legislative level, on the regulatory levels, have actually been really helpful as it relates to the opioid epidemic as a whole.

I think when we look specifically at cancer pain, again, we have to make sure--because there actually is data that patients will need these and actually can do well with them, which is different than sort of population studies of chronic non-cancer pain. We need to make sure that we maintain access for those patients.

I would also say there's--we talked about sort of different populations of cancer pain: those that have active cancer, those that are in survivorship.

Another group that's particularly important to address are patients that have substance abuse disorder or are in remission for substance abuse disorder and now get diagnosed with cancer and have severe pain. And that's where it becomes really a bit of a tightrope in terms of how do we safely manage their pain effectively.

And so, we've tried to come up with a team approach where we use substance use disorder specialists, social work, psychiatry, psychology, palliative care, interventional pain clinicians to identify non-opioid means to control those folks' pain, because they're a particularly vulnerable population, as well.

MS. CUNNINGHAM: That's really--I never thought of that. That's really interesting, yeah.

I want to talk a little bit about marijuana use for chronic pain. Colorado, New York, and Illinois have now passed laws allowing doctors to prescribe marijuana for chronic pain.

What are your thoughts on that?

DR. KAMDAR: I'll let Jason take this one.

DR. YONG: Yeah, sure. So, I think the jury is still out. I think there is some signal where we have found benefit for patients dealing with chronic pain or cancer pain.

I think we still haven't found that right ratio of how much of the different substances, the THC component or the in cannabidiol component, the CBD component.

The challenges are that it is difficult to study, because THC, the component in marijuana that is psychoactive, is still Schedule I; whereas CBD maybe Schedule V and easier to study. But the majority of the compounds that we have are a combination of them.

So, if we're looking to do a validated clinical study with the FDA approval, it requires a lot more rigor and having to go through more hoops to get the Schedule I substance.

DR. KAMDAR: Just to give folks reference, a Schedule I drug is the equivalent is studying something like heroin, which is--you can imagine the security and regulatory elements of that.

And so, you know, I think when it comes to medical marijuana, if we took a poll of this room, half the people would say it's horrible, it's going to be sort of the next gateway to the next opioid crisis. And everybody else would say this is the best thing ever. It may spare us from needing opioids or running these risks.

The truth is probably somewhere in between. I think that the bottom line is we just don't know because we don't have the studies.

And I think what we need, to Jason's point, is to be able to de-schedule that so that it's easier for our scientists and clinicians to actually get the answers about what is the role of medical marijuana, THC, and cannabidiol in cancer pain, and in pain and symptom management, in general.

MS. CUNNINGHAM: Have you yourselves had any patients report success from using marijuana medication?

DR. YONG: Yeah, absolutely. I think anecdotally I've found a lot of success.

We've done a review of these studies that use cannabidiol specifically, or a heavier weight of cannabidiol versus the THC component, and that's shown some anti-inflammatory and some pain relief effects.

And a lot of the patients I have found have also reduced their opioid requirements while using medical marijuana.

DR. KAMDAR: It's an area of research just in cancer treatment itself. What is--are there effects from cannabinoids actually on cancer itself. So, I think that's going to be interesting to sort of see how that plays out.

When we actually look at opioids, there's actually lab models with concern that opioids can actually affect--if we move away from just the opioid use disorder piece--that they actually can affect the immune system function, which is really important for immunosurveillance and targeting cancer cells. We don't know what that means clinically. But again, I think, the point being the more we can think about multimodal approaches for cancer pain, probably the better off that we are.

DR. YONG: Yeah.

MS. CUNNINGHAM: I guess the last thing I wanted to ask was, do you feel like medical professionals are receiving adequate training in pain management?

I know I've read a lot of just anecdotes from cancer patients who felt as though they were receiving good treatment in a lot of ways, but not having adequate management of their pain.

DR. KAMDAR: Yeah, I think it's a really important conundrum that we have. I can tell you, when I was in training, which doesn't feel that long ago, but was a fair bit of time ago, we had essentially no training on pain management. And yet, we're called to treat it so often.

And I think one of the stressors that clinicians feel is that they feel ill-prepared to actually manage pain effectively and safely.

And so, I think that's getting better. What I will say is one of the challenges we have if we look just across our country is that we currently have a shortage of oncologists, of palliative care specialists, of pain physicians that are certified in pain management.

For example, there's only about 5- to 6,000 of the latter two categories, palliative care specialists and pain management specialists.

And we're in an area now--we're sort of on the bottom of an S-shaped curve with the aging of our population. The incidents of cancer is already increasing. We expect that, if we just look at palliative care needs alone, those are going to double over the next 25 years to around 80 to 90 million people. And those needs aren't going to be met with specialists, alone.

And what it means is that we need to make sure that all of our clinicians are able to manage at least first-line symptom management and I think also thinking about new and model strategies to extend the reach of symptom management, whether that's through digital health and smartphone app technology or AI. I think we're going to have to really think broadly about new models of care to address those needs.

DR. YONG: And I think we're seeing the paradigm shift, where the pain is becoming more of the focus on people's training.

And when we say the multidisciplinary approach, a lot of the different disciplines have a focus on pain management, as well.

Some of the reluctance that people may feel from their typical treatment algorithms may have been related to the opioid piece of it, but that's just one component of pain management, one modality.

MS. CUNNINGHAM: Well, I'd love to chat longer, but that's all the time we have right now.

Thank you so much, Dr. Jason Yong and Dr. Mihir Kamdra, for joining me.

I'm Paige Winfield Cunningham. Please stay with us for the next part of our program.

Accelerating Delivery

MS. DEANGELIS: Hi, there. My name is Allison DeAngelis. I'm the Life Sciences Reporter with The Boston Business Journal. Welcome to Accelerating Discovery.

What can we do to bring--deliver new cancer therapies to patients faster? I'm going to let each one of our esteemed panelists introduce themselves and a little bit of their recognition and their background, individually.

MS. CRYER: I'm Donna Cryer. I am the founder and CEO of the Global Liver Institute. I am also concurrently the Interim Executive Director for the People-Centered Research Foundation, which is comprised of health plan networks and clinical research networks, with a particular expertise in observational studies and real-world evidence generation.

DR. SCHRAG: My name is Deb Schrag, and I am a medical oncologist at Dana-Farber Cancer Institute, and a Professor of Medicine at Harvard Medical School.

My focus is on improving the evidence base and getting better information from patients so that we can learn from every patient and get clinical trials done more quickly and generate new knowledge to help people faster.

MS. MILLER: Hi, my name is Erin Miller. I'm with Lazarex Cancer Foundation. Lazarex is a patient advocacy organization that was founded based on the heels of my experience with my husband Mike's battle with pancreatic cancer 15 years ago, and what we learned along the way.

I'm the Development Manager and the Impact Program Liaison for Lazarex.

MR. ISKANDER: Hi, everyone, this is Karim Iskander. I am the Medical Affairs Lead for Leukemia and Lymphoma at Amgen, and I look forward to the discussion today of this very important and timely topic.

MS. DEANGELIS: Thank you, everyone. So, we're to talk a little bit about the world of oncology, what is happening in research, and how we can adapt clinical trials to make them more accessible for patients and bring new treatments to them faster.

Donna, I wanted to start with you, because it's been reported that only about 5 percent of adult cancer patients are enrolled in clinical trials.

Now, why is that and what can we be doing to remove some of those barriers from their way?

MS. CRYER: So, unfortunately, that statistic is correct, when you look across all cancers. And we really need to transform this to make a culture of clinical trial participation.

So, I think that there are three primary barriers to patient enrollment and participation in clinical research, when you're looking across cancers, as a whole.

So, the first is awareness. There is such low awareness about clinical trials, and one of the things that the Global Liver Institute has done to combat that aspect of it is to make sure that integrating clinical trial participation into our core messaging strategy, and having patients understand across the board that participating in a clinical trial should be a consideration no matter where you are in your point of treatment.

The second point is location. As they say in real estate: Location, location, location. It's just as important in health care and in clinical research. And too often, clinical trials have been located in many of the fabulous places that we have here in Boston, but very clinic-focused, very clinician researcher-focused.

They need to be more people-focused. They need to be brought into people's homes, onto their wrists. They need to be located where people are and to be delivered in the context of their lives.

And the third point is the structure of clinical trials, themselves. So, many companies, like Amgen, have been doing a great job of incorporating patient insights into the design of those protocols and trials. And so, that is really one of the most important things to get through the barriers.

You know, in liver cancer specifically, the greatest barrier is getting people diagnosed early enough so that they can take advantage not only of the number of treatments that we now have available, but in those research options.

And so, one of the ways we tried to alleviate that, because when you're diagnosed with cancer time both speeds up and slows way down and stops. And so, at that point where you want to quickly know what is the next step, what should you be doing, to be able to lay out the entire pathway of options for people along research so that they understand participating in this trial may preclude them from participating in another, and really mapping out at the beginning what that needs to look like.

MS. DEANGELIS: So, Erin, coming off of that, I wanted to turn to you. A lot of your focus has been on improving access, particularly around minority communities.

We've seen data that clinical trials are often not representative of a full, diverse population. What are some of the things that we can be doing to better increase diversity in clinical trials?

MS. MILLER: So, Lazarex is committed to improving patient access to clinical trials, especially for minority communities, which are grossly underrepresented in clinical trials.

So, for the past 13 years, Lazarex has been helping--we've helped over 5,000 patients find clinical trial options, and then given them the opportunity to access them through financial reimbursement program.

I'm especially excited to announce today that we have launched our IMPACT program--IMPACT stands for Improving Patient Access to Cancer Clinical Trials at three comprehensive cancer centers throughout the country, with the help of Amgen as our founding IMPACT sponsor.

The pillars of this IMPACT program are, increasing enrollment, increasing retention, and increasing minority participation. And there are two kind of fairly simple ways in which we are able to do that, and we've had great success so far.

One of them is a deep dive into outreach and engagement within the communities that are within the catchment area of those particular institutional sites.

And the other one is by offering financial reimbursement to every patient at consent. Every patient that's considering a clinical trial has to go through patient consent, and if we take the financial worry away, it can affect the decision that they make to participate.

MS. DEANGELIS: So, Karim, then, I mean, to--with the mention of Amgen, steer it over to you, bringing--improving the access of patients to clinical trials, that's just one side of everything.

What steps are Amgen taking to streamline what could be a very lengthy process for patients?

MR. ISKANDER: That is a very good question. Improving how we do clinical trials is a very important focus for Amgen, now.

We believe cancer treatment is at the cusp of a major transformation with targeted immunotherapy, cellular therapy, more specific biomarker-driven treatments that will allow for more personalized treatment for patients, as well as aiming higher--basically, higher expectations from therapies.

So, this is an evolution of the therapeutic landscape and oncology and what is expected to evolve in the coming few years, but we also have to evolve the design and execution of clinical trials to catch up with that.

For example, at Amgen, we have 20 assets that enter early clinical development in oncology. If we try to plan randomized, phase three trials with traditional end point for every indication for every asset, we will never be able to develop even half of those assets.

And to--and even the ones we will be able to bring to patients, it will be, for many patients, too late, and they will miss the window to benefit from this innovation.

So, we are taking three approaches to try and tackle that.

One is smart designs for clinical trials, like adaptive statistics, where the trial size change based on the emerging data from the trial; or using a single-arm clinical trial with historical comparator.

We are in partnership with other companies to pool our clinical data together to establish a benchmark for standard of care so we can quickly evaluate new therapies and make quick decisions whether they improve or not.

MS. DEANGELIS: Absolutely. Across the industry, we're seeing a huge compilation of companies coming together to pool data.

Sorry, I interrupted you. Please continue.

MR. ISKANDER: No, that's exactly what--I mean, we have a common mission of serving patients, and that is exactly what we all strive for.

And the other component is around end points, particularly surrogate end points that highly correlate with long-term outcomes. For many diseases, it is very--it is almost not feasible to wait for measuring overall survival. So, we use early end points like minimal residual disease in hematological malignancies.

Two years ago, we had Blincyto approved for acute lymphoblastic leukemia with minimal residual disease. And just two months ago at the EHA meeting, we presented the five-year follow-up of this trial, showing the overall survival advantage that--confirming the surrogacy of MRD.

Those type of examples, I mean--and this was also a single-arm study with historical comparator. So, those types of examples really is the future for development of new drugs and oncology, with the speed and urgency that patients deserve.

The third and last component is actually incorporation of the patient voice in clinical trials. I remember a year ago I was initiating a study that we--it was patient-centric study aiming to improve the experience for patients.

And I was very excited to share with an advocacy group the design of the study. And the first question they asked me: Have you actually asked the patients for the feedback?

And we haven't at the time, but we quickly corrected that. And sure enough, after conducting patient ad boards and interviews, we did change the design of the study, eliminated many nice-to-have assessments that makes it more appealing, more feasible for patients to participate.

And we continued to innovate in trial design, but most importantly maintain adequate ability to define the safety and efficacy of products before offering it to market.

MS. DEANGELIS: If you could give one or two examples of some of the things that you change in a patient-centric trial, I think that could be a novel concept for people who aren't coming from a clinical background.

MR. ISKANDER: Yeah, we--a couple of them.

One is what I just mentioned is about eliminated unnecessary or kind of nice-to-have assessments.

Sometimes we plan for everything to make sure, what if we get this question from regulator, what if we get this question from payors. But then, it increases the burden where--you know, for patients who have other alternatives, like in United States, it becomes very challenging to participate in clinical trials.

Another component which we start to integrate now is the incorporation of digital health and trying to reduce the visits or the need for patients to come to the clinic, but instead use some of the digital technology to communicate vital signs and information directly to the research nurse so that they can monitor the patient remotely.

MS. DEANGELIS: I think that's a perfect segue to go over to Deborah.

I mean, working in the clinic with patients every day at Dana-Farber, what are some of the ways that you've seen adaptations in clinical trials affect your patients, particularly when it comes to things like the data that we're collecting from them and their process throughout the cancer journey.

DR. SCHRAG: So, I think we've come a long way. And really building on what Karim says, we have made clinical trials much more patient-centric by involving patients from the beginning, and that has been so critical. And that is because of partnerships with organizations like yours, that you both represent; with companies; as well as with care delivery organizations like the one that I work for.

The other pillar has been technology, and technology has really helped with--it's not just the technology. We've changed our mindset, and that had to come first. Clinical trials are not something we do to patients or for patients. They are something we do together with patients as a partnership. And simply changing that mindset is critical, so, patients and their families understand why their data is so important and why we need to understand all aspects of their experience, why we ask people to report--to fill out forms. Well, we ask people to fill out forms because we learn vital information about who's getting a benefit and who's getting a harm, and that lets us intervene earlier and change things that need to be changed, figure out who a new drug isn't safe for, how something needs to be modified.

But we've had to get better. We've had to move away from paper and clipboard. We now get information from patients from their smartphones in between visits.

I treat GI cancers, and some of my favorite patients are the ones who drive down from northern Maine. That's about a six-hour drive. There's a lot of potato farmers and there's a lot of lobster men. They do not want to come to Boston. So, we have to figure out how to partner with oncologists in Maine so that those patients can go on clinical trials without driving to Boston.

That's an issue that you care about a lot, but we are now able to capture the patient experience digitally, using technology to partner with oncologists who don't work in major cancer centers.

We used to ask patients to come back again and again, partly for us, because we wanted to make sure, "Are you okay? Is this safe? Is this new drug working?" Well, to make us feel better that we're not causing any harm. That's not a good enough reason to make a patient drive four hours to visit us.

MS. DEANGELIS: Well, that's a great place to end.

We are hoping everybody who is tuning in to come back. We are going to turn it back over to The Washington Post staff.

Thank you, and thank you to my panelists.

The Power of Precision Medicine

MS. SELLERS: Good afternoon. I'm Frances Stead Sellers. I'm a senior writer at The Washington Post, and I'm delighted to introduce this afternoon's guests.

First of all on my left is Dr. Katherine Janeway, Director of Clinical Genomics at the Dana-Farber Cancer Institute;

Next to her is Dr. Andrew Kung, Chair of Pediatrics at Memorial Sloan Kettering Cancer Center;

And then, Dr. Dejan Juric. He's a physician scientist and precision medicine expert at Massachusetts General Hospital.

So, welcome to you all.

And a reminder to everyone in our audience, if you do want to reach our panelists with a question, you can tweet to me using the hashtag #PostLive.

So, now, let's get started. We've been hearing a lot about precision medicine, Dr. Kung. It's a term we hear a lot about but probably people don't understand that precisely. Could you give us a brief definition and tell us why oncologists in particular are so excited about it?

DR. KUNG: I think there's a lot of different definitions of precision medicine, but at its essence, the goals of precision medicine are to give the right drug to the right patient at the right time.

I think, as an oncologist, some of us bristle at the idea that precision medicine is new finding, a new concept, because that would imply that the way we treated cancer has been imprecise up to now.

I think why oncologists are so excited about the concept of precision medicine is that the tools that we have to diagnose, to understand what went wrong to result in the cancer and the arsenal of drugs that we're now able to match to those abnormalities has been advancing so rapidly that this is a time of convergence, where all the investments in research over the last 30-40 years are starting to bear fruit. And so, I think our tools are more precise, our drugs are better, and it really makes it a very fruitful time to marry these two in the concept of precision medicine for cancer.

MS. SELLERS: So, that brings me to a question to you, Dr. Juric. These new approaches have massive potential benefits for a small subset of patients.

How--what are the challenges in bringing them to those people? How do we make that transition from the lab to the patients you people are treating?

DR. JURIC: Precisely. Precision medicine is exactly this: It's about inverting the pyramid, so to speak, of treatments that we have.

We used to, in the past, treat everyone with the same treatment, and only a small subset of them would derive benefit. We're now trying to invert this pyramid to end up with much bigger benefits but in a smaller number of patients. For this reason, we have to test everyone, we have to understand what defines their cancer. To beat the enemy, you need to know the enemy. So, we have to know exactly what drives the cancer.

And then, we have to go after this small subset of patients with drugs that really do their job, that produce this impact.

MS. SELLERS: True match.

DR. JURIC: Exactly. And for this reason, we need to reach the patients. And I think this session follows on a wonderful session that points to the fact that a really small subset of patients participate in clinical trials. Three percent is probably a generous number for some diseases. And since we are going after smaller and smaller subset of patients, we really need everyone to partner with us, to actually drive the innovation of these drugs by participating in clinical trials, which are not just trials where we're collecting the data. The intent is not just that, it is to treat.

Because we have better and better drugs that have to pass even more rigorous hurdles and tests in the preclinical space. When they enter the patient--we have much better understanding what they may achieve.

And since we are going after this small subset of patients, we really need everyone to get tested, to have their tumors analyzed, to participate in these innovative treatments, clinical trials, as early as possible, and that will drive the entire field forward.

MS. SELLERS: That's fascinating.

Dr. Janeway, take us into the process of treating a patient.

You had a patient, a young 13-year-old, I believe, who did very well with precision medicine. Can you tell me a little bit about what his experience was and then how he's doing now, and the huge transformation that this brought to his care?

DR. JANEWAY: Yeah, I would be happy to. I think this story really brings to light what my colleagues have discussed so far.

So, we had, now about three years ago, a patient referred to us from very far from Boston. I practice here in Boston, and he was referred to our surgeons. And he had a football-sized tumor right next to his hip that had been causing him hip pain that occurred, you know, 24 hours a day, kept him awake at night. It had been biopsied, or sampled, already twice, and nobody could provide a name for the cancer that he had.

And when you don't have a name for a cancer, you actually don't know what treatment to use, because all of our oncology treatments are based on identifying the cancer type.

So, fortunately, we were able to--you know, we explained to the surgeon that we thought we might have an approach to help figure out what the cancer was and what to do for treatment, so we brought the patient to Boston. And we were--we used tumor profiling, which is one of the tools that Dr. Kung mentioned, where we sequence or read every single letter of the--or many of the letters of the cancer, to help understand what's making it tick, what's making it go.

We were able to find a unique event which is called an NTRK fusion, it's where two genes change places and the gene gets turned on abnormally and makes the cells divide and grow into this football-sized tumor. In this case, that not only helped us classify the tumor, to know what it was, but also we had one of these new medicines, these what we call "targeted medicines," that basically takes what's turned on and specifically turns it off. And that thing is only turned on in the cancer. So, by turning it off, you really only impact the cancer and not the rest of the body as much as we do with our standard treatments which sort of--

MS. SELLERS: How was he receiving these drugs?

DR. JANEWAY: So, this was an oral medicine and it was received on a clinical trial.

And after two months, the tumor had shrunk to about half the size. And after about six months, it had shrunk down to the size of a walnut. And so, whereas in the beginning when we first encountered him, the surgeons told us there's no way to remove this tumor without removing part of the hip, some of the intestines, a major surgery with really significant side effects for him that he would live with for the rest of his life. They were able to just pluck it out. There were no alive cancer cells seen at the time it was removed.

And three years later, he's doing great. And during the treatment time, he didn't lose his hair, he went to school, he was feeling well. The pain he was having in his hip was getting better. And you know, that's really very different than the cancer treatment experience that you heard at the beginning of this session--

MS. SELLERS: Right, right.

DR. JANEWAY: --from--that people experience with our standard sort of chemotherapy type treatment.

MS. SELLERS: And my understanding is he was not from the Boston area, but that does bring me to a question for you, Dr. Kung, about these very expensive treatments that are often provided in wonderful academic medical centers as we have here. But what are the opportunities to provide them to people around the rest of the country and the rest of the world?

DR. KUNG: I think drug costs are certainly an area of intense conversation, not only in the cancer space but across all of medicine.

I think that access and the democratization of some of these innovative therapies, that it really is the obligation of the academic medical centers, the comprehensive cancer centers, to do the research to conduct the clinical trials that will ultimately lead to an approval. And the approval of a drug is how you democratize it and make it available to anybody, anywhere.

And so, I think that those of us that work at academic medical centers like Memorial Sloan Kettering, we're obliged to do the kind of clinical trials that ultimately provide access to all cancer patients through approvals.

MS. SELLERS: One of our listeners is asking over Twitter what the difference is between personalized medicine and precision medicine. And if any of you want to take a quick shot at that one...

DR. JURIC: So, the difference fundamentally is simply about methodology that we use to characterize the cancer.

In its essence, targeted therapies, personalized therapies are very similar: We're trying to give the right treatment to the right patient at the right time. What changes over time is the technology itself.

So, now, we can use so-called "next-generation sequencing," which is a very precise way of determining so-called mutations or errors in various genes that drive cancer. And with these methodological improvements came the need to kind of reframe our thinking about cancer, and precision oncology as a term emerged.

But it's fundamentally about the deeper and deeper understanding that we have about cancer using better and better and more precise technologies.

I think the NTRK example that we heard just a few minutes ago is really a wonderful example how these precision approaches have completely changed the framework.

Think about it: NTRK is one of the first examples of something called disease- or cancer-agnostic drug development, where it's not so much about what cancer does the patient have, it's about what mutation is driving their cancer.

And if there is a mutation, the chances of success with that drug approaches about 75 percent, regardless of the actual disease. Some other biomarkers, we call them, or mutations that we use to select treatment are very context-dependent. There, it really does matter what disease you have and what biomarker you have.

MS. SELLERS: So, the story you've told me was so inspiring about your 13-year-old patient, and these numbers also seem very exciting, but precision medicine has its critics. And I know there were a series of articles presented before the American Society of Clinical Oncology presenting four precision medicine studies. Two were failures and two had maybe a 5-percent success rate.

So, how do we fix this? Is it through clinical trials? Are we back into the question we asked before? What's the next step in making sure that we have greater success for more people?

DR. JANEWAY: So, if you don't mind, I'll start to answer that question.

So, I think some of the trials that were looked at in that study were conducted at the beginning of precision medicine, and we've made a lot of progress.

So, how do we make progress? We improve the way that we're interrogating the cancer. So, our approaches to finding or discovering and naming or identifying the thing that is driving the cancer have really improved.

Second, our drugs improve. So, you need--these targeted therapies need to be very active and precise at engaging with the abnormality and the cancer.

And then, finally, we need to look not just at the success stories but at the population of patients as a whole, and we need to understand how often and then what cancer types are we best at finding the abnormalities. When we do find them, are we able to get the drugs to the patient? When we get the right drug to the right patient at the right time, how well does it work?

And then, another question that's incredibly important in the field is how often does resistance develop? So, if the drug works, how long does it work for? Does the cancer find a way around it, because cancer is very smart?

So, I think many of us are involved in projects that do that. One way to really understand that on a global level is to bring a lot of data together. And in childhood cancer, in particular, that's an area that all of us are working on quite a bit right now, is to aggregate data so we can answer those questions for our patients when they come to us. How likely are you to find something? How common is it to have a success story like this?

MS. SELLERS: So, Dr. Kung, you are also a pediatric oncologist, and President Trump recently pledged to allocate $500 million towards pediatric cancer research over the next 10 years.

Is that a drop in the bucket? Should more be done? Is that the right kind of focus you need, or are there other areas that you'd like to see public policy change or politicians move into this area?

DR. KUNG: I think as a pediatric oncologist, certainly if you're a parent of a child with cancer, any sort of commitment, as was made, is welcome.

The National Cancer Institute, which is the largest funder of cancer research in the United States, has about 4 percent of its budget devoted to pediatric cancer.

Pediatric cancer, like adult cancer, is not one disease, and so that 4 percent is spread amongst many different types of childhood cancers.

And so, certainly, the 500 million that was committed does represent a welcome addition. I would say that, as a field, the progress that we've made to date has all been on the backs of basic and clinical research.

And so, to sustain the progress that we've made, a renewed commitment to research funding across the board--

MS. SELLERS: So, we're talking about basic science there and not--

DR. KUNG: Absolutely. So, basic science, but also translational science, patient-directed, patient-oriented science and discovery. Now is the time to recommit to the kind of funding that will pay off in the next ten years.

MS. SELLERS: Dr. Janeway, just quickly, I know you told me that you were also a cancer survivor. And how has that affected the way you treat pediatric patients with these very specialized platforms of care?

DR. JANEWAY: Yeah, well, I feel very fortunate to pick up on the survivorship theme that was discussed at the beginning of this program.

I had leukemia a little over five years ago, and the experience took--was--or has always been a real professional commitment and passion and turned it into a personal and family experience and a personal and family commitment to really move the field forward.

And I am fortunate to have benefitted actually from precision therapy myself. I had--the gene mutation that was driving my leukemia was identified and I got a transplant and a drug that counteracts that. And I don't know if that's why I'm here five years later, but I do think, you know, we need to continue to make this sort of progress in precision oncology and change that triangle--is that what you said?--from a small a triangle--make the numbers of patients who benefit larger and larger.

MS. SELLERS: Invert the pyramid.

DR. JANEWAY: Invert the pyramid, again, and help a larger number of patients with precision oncology.

DR. JURIC: I think it's really important, to follow on your previous remarks, to think about the entire continuum, as opposed to sort of having these silos with pediatric oncology as one part of the story. Adult oncology operates in a completely different space. We have to understand that we can learn a lot from each other.

I have spent almost ten years studying one genetic alteration, a gene called PIK3CA. It happens to be the most common actionable alteration in estrogen receptor-driven breast cancer.

Interestingly, though, the same mutation in children is associated with so-called overgrowth syndromes, with vascular malformation--not necessarily cancer.

All of a sudden, by looking at the two and realizing how and why the same event causes two different disorders, this is fundamentally a sort of beautiful way to start learning from each other and gain insight--

MS. SELLERS: So, you can use the one to--

DR. JURIC: --to adult--exactly. You can study one disease in children and actually learn, wow, is it the context that matters? Is it in adults--it's not just this mutation, it's other mutations? Is it the timing that matters? When does the mutation get turned on?

So, this is how we can actually learn from each other and we can understand these complexities better.

I want to go back to your comment on these criticisms of precision medicine. We're just starting, literally. We're now at the phase of marking the field, having the roster of players, and being able to discern their numbers. But as anyone who watches soccer or football knows, there is a lot of drama on the field. We need to understand these interactions of players better. We need to know how can we change the timing. We're just starting, and it's a good time for cancer patients, because they can witness--and I hope to see that in the near future even bigger and bigger progress in the field.

MS. SELLERS: Right. Well, unfortunately, we have to come to an end just as you're saying we're just at the beginning of this enormously important research.

I would like to thank you all three for coming here this afternoon. Please remember to keep tweeting if you have more questions for us this afternoon.

Thank you for Doctors Janeway, Kung, and Juric for joining.

And please stay seated in the audience for the next portion of our program. I'll be back with you soon.

Coding Cancer

MS. SELLERS: Good afternoon. I'm Frances Stead Sellers. I'm a senior writer at The Washington Post.

I'm here today with Andrew Beck, who is CEO and co-founder of PathAI;

Lesley Solomon, Senior Vice President and Chief Innovation Officer at the Dana-Farber Cancer Institute;

And AmirAli Talasaz, who is the President and CEO of Guardant Health.

Welcome, all three.

And a reminder to everybody in the audience, if you have questions, please tweet them to me using the #PostLive.

So, let's get started. And this afternoon, our focus is on innovative technologies that are transforming cancer care.

So, AmirAli, I'd like to start with you. Your company is apparently developing a test that could potentially detect cancer very early on through a blood test. How far are we from that sort of diagnosis? Where are we along the curve towards learning about that? And what lies ahead?

DR. TALASAZ: Yeah, thanks for having me.

When we started Guardant Health, like seven years ago, we believed in the promise of using blood tests, simple tests, or liquid biopsy, as we call it, for detecting cancer in very early stages.

And today, based on all the progress that we made and the whole field of liquid biopsy made, I am very happy to say that we are not that far away for such a promise to become a reality.

Now, in terms of actually what Guardant has done and the whole landscape of liquid biopsy, we decided to start from advanced cancer patients, in the place that actually tumor levels in the blood are higher and the unmet clinical need is clear.

We developed our test for treatment selection advanced cancer patients, and through the data we have generated in that journey of testing over 100,000 patients, we optimized our technology. We understood the biology of these tumor biomarkers in blood over time. And that biological insight actually helped us to even optimize the technology further.

Last December, actually, we launched a test for research use only for looking at the cancer patient survivors, is their cancer back or not, but in the research use setting for academic partners and by pharmaceutical companies to start generating some kind of clinical evidence.

And we also announced that later this year we are going to start our first pivotal study on the screening part of looking at colorectal cancer screening in patients with average risk. It's going to be a 10,000-patient study. We are happy to start it actually later this year.

MS. SELLERS: So, this is looking at a future where you could go for your annual blood test and be tested for--

DR. TALASAZ: Exactly. And you know, this platform technology is not just specific for colorectal, but that's the first cancer type that we are starting generating the clinical evidence and hoping to bring the test to clinic. And you know, that's why I'm saying that that promise of liquid biopsy and screening cancer with a simple blood test is not that far away.

MS. SELLERS: So, Andrew, take me into another form of technology. Your company is involved with artificial intelligence and pairing that to help with pathology, which, as I understand, is usually done with slides and using the human eye.

What can AI bring to that sort of work? What difference can it make? And what advances are you looking at in the future?

DR. BECK: Sure. So, kind of the background to this is, you know, the job of the pathologist, really for maybe 150 years, has been a tissue sample is removed from a patient because there's serious concern of a disease process happening.

For example, you can imagine in the future, a person does go in for her annual physical, gets a blood test that reveals there could be a risk of a malignancy somewhere. And we would expect the next step would be a tissue biopsy. And that's a piece of tissue taken from the patient, sent to the lab--

MS. SELLERS: Very invasive.

DR. BECK: Yes, I mean, the assay can be invasive. And then, really, it's the pathologist's job to make the ground-truth diagnosis of is this cancer and does it need to be treated with potentially aggressive therapies, including surgery or chemotherapy or radiotherapy, or is this a benign process?

So, it's incredibly important to get that right. And the task itself is--has been for 150 years a pathologist looking at glass slides with, in some cases, special stains or routine stains under a microscope. And based on the pattern of what they're seeing by eye, making a diagnosis, putting that in a report, and then that becomes the ground truth to guide clinical care.

So, one of the areas of technology that's advanced tremendously over the past five years is computer vision, and this is training computers to see patterns in images, and that's been advanced by a few things: One is availability of lots more data, availability of cloud computing, and some key algorithmic advances.

So, we really see a future where every glass slide that comes in, the pathologist and the physician is being augmented by the best in machine learning to make sure that each patient is getting the right diagnosis.

MS. SELLERS: Big data, looking at the patterns of these cells.

DR. BECK: Certainly learning from very big data.

So, the great thing about AI systems is they can learn from essentially arbitrarily large datasets.

So, for example, we've trained our system now, millions of examples of labeled images and, you know, we're a very young company. You can imagine, five years from now, it will be hundreds of millions.

So, let's say, every new pathologist right out of training can be assisted by a system that's trained off very large data. And then, the system, when it's deployed, again is generating large data.

So, on each slide, there are on the order of hundreds of thousands of cells, and an AI system that's been trained on a very large and robust dataset can then classify all of these cells and use that information to guide a diagnosis.

MS. SELLERS: Just briefly, you're also an MD, right? So, do you believe that there should be more use of robotics and AI technology in medical schools? Should medical students be learning more about these medical technologies early on?

DR. BECK: Absolutely, yeah. And I think, you know, medical curriculum should be very dynamic and really adapt to the new technologies that are going to define the medicine of the future.

And I think often they actually are pretty dynamic in changing curriculum, being quite critical. So, I think medical school is an area of education where they're constantly reevaluating. And without a doubt, it's going to be very important for physicians of the future to know the strengths and the limitations of these technologies, and for it really to be a core competency of them to pick the right technologies to help patients the most.

MS. SELLERS: So, Lesley, you come from a background in startups, and you're now at one of the premier cancer institutes in the country. What's the most exciting new technology you see coming into oncology now?

MS. SOLOMON: Yeah, I think actually the two people that you have on either side of me are some of the most important technologies that are out there.

I think the dream that we all have is that we're going to be able to detect cancer--

MS. SELLERS: With a blood test.

MS. SOLOMON: --at stage one, when we can actually treat it and prevent it from getting worse. I think that's one dream.

I think the other technology that we get really excited about is cancer vaccines.

We have Dr. Cathy Wu of Dana-Farber has been developing personalized neoantigen cancer vaccines, and if we can figure out how to do that, scale it, and make it work in all patients, that, again, is a dream that one day we could give a vaccine to a child before they even get old and in danger of getting cancer, for every cancer out there.

And so, I think there are technologies now that are really pushing the edge. You know, there were a lot of discussions earlier about clinical trials, and the more we can test these things and the more we can put these things in our patients and try it, the better off that we'll be.

MS. SELLERS: So, how does it work for you and the role you have at Dana-Farber working with companies or hearing from clinicians about what's out there. How do you know what to--how does the development, the bridge-making happen?

MS. SOLOMON: And that is actually the challenge because, again, on either side of me, there are two great, exciting technologies being developed but they all have competitors that are doing the same or very similar things.

And so, part of what we have to evaluate is how do we figure out who the right partner is for Dana-Farber. One way that they're doing it, and they're doing it successfully, is by identifying a clinician champion that wants to test their technology.

When they come to me and they say, "Hey, we want to work with you. This is really exciting technology." I say, "Okay, great. Let me go find the right clinician to do this." And it actually takes me a long time to figure out who that right person may be. But when they find the clinician, find the faculty member who is so excited about this--Guardant is working with one of our clinicians now. And if we can work with them together and then my team supports them to make it happen, so to do that work. But it is challenging to identify sometimes who's the right partner out there to do this work with.

MS. SELLERS: I have a question that's come in Twitter, and it builds a little bit on what I just asked you, Andrew.

But the viewer asks, "Can you talk about how creativity works in making these amazing strides in treating cancer? How do you teach or encourage creativity in researchers and future researchers?"

I think that's an interesting approach, and if any of you would like to jump in.

DR. BECK: My two cents are I think we can leverage our creativity so much more with some of these new technologies, like what very creative companies like Guardant can do with next-gen sequencing, it's sort of using--realizing these are tools that enable our creativity to have global impact and potentially allow us to do totally new things. And I think it is so exciting.

And I think, you know, the creativity has never been required. And I think, say, in the future, if pathologists are aided by AI, I think they'll have far more ability to use their creative skills to impact patients even more than, say, today or ten years ago where a lot of the job was actually counting individual cells.

So, I think we'll see sort of a blossoming of physician creativity and scientist creativity leveraged by a lot of the lower-level tasks being solved by technology, hopefully.

MS. SELLERS: AmirAli, have you been designing clinical trials for these tests now? Are you working now with hospitals in a clinical setting?

DR. TALASAZ: Yeah, sure.

You know, one of the elements we always believed at Guardant was to develop the clinical evidence that our devices matter, our tests matter, which in this case means we could improve the clinical outcome for patients.

I remember actually the first week back in 2014 when our Guardant360, our first clinical test for advanced cancer patients came to market, the same week actually we got the first sample for one of our major prospective clinical studies back in 2014.

And that was with the help of definitely the key opinion leaders which are in major academic centers. We actually scaled that operation. We worked with all the cancer centers, which are NCCN centers, and they are designated cancer centers in terms of their quality of clinical care and clinical research.

And maybe I should--going back to the previous topic and the value of the data and how it helps us to become more creative in terms of our technology development, I can tell you the biggest assets that we had at Guardant was the data we were generating. And when we were using kind of learning algorithms that when you are processing more and more samples you are generating more and more data, over time your technology could be improved. We were achieving much higher performance, but also we were learning the biology better.

And when we were learning the biology better, that was the part that creativity was coming into our picture on technology development, that we could look at some new data streams, new dimensions, that the first stream of our data was blind to. So, that enabled us to capture higher-diversity datasets and more complicated learning process to really optimize our technology and develop the technologies that we are now trying to take them to clinic for early cancer management.

MS. SELLERS: Lesley, one of the buzz terms I hear a lot is "digital health." How are you integrating digital health in Dana-Farber, and what does it mean for an institute like that?

MS. SOLOMON: Yeah, cancer oncology is incredibly complicated. And so, so much of what we do at Dana-Farber is based on the therapeutics and the drugs and the science that's around curing and treating our patients.

Digital health, to me, is a partnership between the patient, their caregivers, their providers, and the therapeutic process that they're going through.

And so, when we think about digital health, we think about how can we make the patient experience better, the provider experience better. And how can we also use digital health to get the intellectual capital from Dana-Farber clinicians out to the rest of the world?

MS. SELLERS: Can you give a very practical example, just to make the point?

MS. SOLOMON: Yeah, specifically, Dana-Farber, over the past three or four years, we've developed cancer pathways. So, clinical decision port--sorry, clinical decision support on when a patient comes in, what their genomics are, what their disease looks like, and then what the first line of treatment should be, the second line of treatment, the third line of treatment.

And our clinicians update that quarterly based on new research, new drugs, new information. And what we were doing is treating our patients with that data, with those pathways for years. And our goal was to actually take those pathways and get it out to patients everywhere.

And so, last year we partnered with Philips healthcare to put our Clinical Pathways into their IntelliSpace platform.

So, now, hospitals around the world, actually, can take the IntelliSpace platform and use Dana-Farber decisionmaking in treating their patients, which is wonderful, because in a lot of community hospitals, you might find them using older protocols. And now, they can start to use the cutting-edge protocols that Dana-Farber is using.

MS. SELLERS: So, you can transfer this, your experience, all around the world.

MS. SOLOMON: So, now can we take what Dana-Farber clinicians know and get that out to clinicians and patients everywhere so that their care can be improved.

MS. SELLERS: Right. Andrew, we've just had this panel on precision health, and I was wondering how AI could possibly accelerate those sorts of novel approaches to treating cancer.

DR. BECK: Sure. So, you know, the goal of precision of health is to understand in great detail the characteristics of a particular patient's disease and then to enable the right treatment to be selected for their disease, and an AI can help in a few ways.

One is enabling us to learn from every patient in the past. So, we can generate features and learn about the complexity-as-input of what are the characteristics of the patient's disease from their genomics to quantitative information from pathology, other family and clinical history. What treatment did they receive and what was their outcome? And with machine learning, we can use each of these as a training example. And over time, we will accumulate many training examples. And we've already seen this in a lot of our work, to where, when we get a new patient sample, you know, the goal is to be able to then apply these models to make a prediction for which treatment is going to be most effective for that particular patient, based on the particular characteristics of their disease.

So, to really--we think, to do precision medicine effectively and scalably, it really needs to be learning over time from data, and machine learning is sort of the core technology that enables learning for more and more examples.

MS. SELLERS: You know, the health tech sector is so big and so sprawling, I'd love you each just to give me an idea of what you think the next big thing is, not necessarily in your own field or your own company, but what would you like to see? We've got a couple of minutes, so maybe--

DR. TALASAZ: So, I think--I believe on AI in genomics and in health care, but with the notion of data plus some AI algorithms which, after generating vast majorities of the data over time gets better--one dealt with biological insight development.

If you can connect these three together and close the feedback loop, I think some significant, unmet need in the clinical care in oncology and other kinds of diseases would get solved.

MS. SOLOMON: I think that every patient that comes into Dana-Farber--or any other cancer center--should come in with their disease and we should know immediately what treatment they should get.

And in order for us to do that, versus testing things on them that might not work for that patient with that disease, we need more data. And we need data that can be put together and then these machine learning algorithms can be built on top of.

And so, I do see a future where when all of the data that we have at Dana-Farber and across all these other cancer institutions comes together and we can learn from it and predict which patient should get which patient, without having to try one thing, try another thing. And we only can do that by understanding the genomics. We're doing--we have a program at Dana-Farber called ImmunoProfile where we're now starting to profile the immune environment of every tumor so that we can start to put that data, the imaging, the pathology, the radiology, all of that together will allow us to make these predictions and treat patients the way that they should be treated, immediately.

MS. SELLERS: Yeah, exciting prospect.

DR. BECK: Yeah, and just to kind of reiterate this, I think one of the major challenges and opportunities over the next five or ten years is, first, using these technologies scalably in clinical research.

I think we're only at the very beginning of even large, say, biopharma companies running clinical trials for them to be able to integrate data across their, say, hundreds of trials and tens of therapeutic areas, to really tremendous amounts from the great wealth of data that can be generated from pathology and from genomics, and from other data types.

And then, probably even the larger challenge, which we're only at the beginning of, is then how do you distribute these scalably, globally. And that is where the major impact is, to connect labs and hospitals around the world with--you know, through the Internet, through cloud computing, and through other platforms, with the output of all the learning we're getting from clinical research.

And I think this virtuous cycle of connecting the real world to clinical research will have a tremendous impact.

MS. SELLERS: Well, these are exciting possibilities. And I want to thank you all very much for sharing your thoughts with us.

That’s all we have time for today. You can follow-up on this afternoon’s programs on WashingtonPostLive.com. You can see videos there and, later on this evening, photographs and clips from this afternoon’s sessions.

And thank you very much, everybody in the audience and here on stage, for joining us all today. Thank you.

[Applause]

[End recorded session]