The Pan-Mass Challenge’s (PMC) annual bike ride fundraiser broke records with this year’s $63 million donation to the Dana-Farber Cancer Institute in Boston. The PMC has exclusively raised $717 million for Dana-Farber over its 40-year history. We chatted with PMC Founder and Executive Director Billy Starr and PMC Director of Stewardship Meredith Beaton-Starr to learn more about the organization’s history and commitment to Dana-Farber. Dana-Farber president and chief executive Dr. Laurie Glimcher explains how the funds impact patient care and research. Over 150 Dana-Farber employees participated in the last ride, including Dr. Katherine Janeway, who was a cancer patient at the hospital herself.
Emily Kumler: I’m Emily Kumler and this is Empowered Health. If you’re from New England, you’ve probably heard of the Pan Mass Challenge, which is a bike ride that takes place every August. Last year, 6,800 people rode in this race, which raises money exclusively for Dana Farber Hospital and the research that takes place there. And I think in today’s environment where we have a lot of conflict of interest, where we’re questioning where people are getting their research funding from and how hospitals take money from pharmaceutical companies. In Boston, to have one of the biggest cancer research centers in the country receiving its largest donation from a private organization that raises money through a bike race is pretty phenomenal and it turns out that the PMC is the most successful single event of any athletic fundraiser. So it’s significant and they have raised more than $717 million for Dana Farber. We were so excited when the Starrs, who are the couple behind the Pan Mass Challenge, who came up with it, who have grown it to be the success that it is today reached out to us and said that they had a secret they wanted to share with us.
Billy Starr: Alright, well listen, I’m getting ahead of it because tomorrow is the board meeting. Our gift will be $63 million, which will include two special gifts. I guess special meaning big, one that was known and one that is still not known. With the hiring of our new COO, Jarett Collins, himself a 10 year rider, former first employee on the ground in Rwanda to create a school there for partners. One of his personal friends who had been a donor for a long time, head of a large foundation, is making a $2 million gift. Nobody knows that except Laurie, I’m sure, and my board.
Laurie Glimcher: I’m Laurie Glimcher. I’m the CEO and president of Dana Farber Cancer Institute and have been so for the last three years. My background as a physician and scientist pretty much took place at Harvard throughout my career. I’m a fundamental scientist and an immunologist. Prior to taking over the helm at Dana Farber, I was Dean at Weill Cornell Medicine and prior to that I was a professor at Harvard Medical School and Harvard School of Public Health. I’m delighted to be at the helm of Dana Farber Cancer Institute. It’s an amazing institution and I feel honored to be at the helm.
Emily Kumler: And you’re the first woman to be running the show over there.
Laurie Glimcher: I am the first woman and I was also the first woman to be a Dean in any medical school in New York city.
Emily Kumler: Fantastic. So let’s just start a little bit by talking about what the transition is like to go from being a physician and a professor to being a CEO and President. I mean, I feel like you have different goals or objectives in those different roles.
Laurie Glimcher: Yeah, I think that’s absolutely true. You know, I had many, many years of running a laboratory and having the privilege of making some significant discoveries about the immune system. And you know, at a certain point in my life I decided that perhaps I could have a bigger impact on the whole academic medical center world by being in an administrative leadership position and not just focusing on my own laboratory, which I loved and I still have a small laboratory today. But I think that if one decides that it’s time to go into an administrative position, I think a couple of things are really important. First of all, that one would take great pleasure in enabling the careers of others rather than just focusing on oneself and that you would always put the welfare of the institution and of patients first. And I felt that I had reached that point in my life where I was excited to be able to promote the careers of talented faculty members and administrators and take enormous pleasure from their success. And I really do, you know, and I’m able to raise a gift for a faculty member to really enable and accelerate the wonderful research they’re doing. That makes me very, very happy.
Emily Kumler: Well, it’s interesting to me because I feel like your background in the immune system has obviously come front and center with regards to cancer treatment and immunotherapy. And so it’s sort of an interesting time, too. I mean, I’m sure that wasn’t a coincidence, but for you to be out of the trenches and sort of helping to raise money for something that you know so intimately in your own work.
Laurie Glimcher: And it’s been a lot of fun. But what really keeps me going is not only the research that’s being done here, which is really transformative. Dana Farber has been on the cutting edge of the exciting new revolutions in cancer for the last decade or two. I mean, it’s been an amazing time for cancer, but it also delivers the most amazing patient care I have ever seen. You know, usually when, when the CEO gets letters or emails from patients, it’s usually because they’ve had an experience that they have not been happy with. But that has not been my experience at Dana Farber. I’ve just gotten hundreds of emails and letters from patients, what exceptional care they’ve received and how, even though their family member might not have survived that we gave him or her an extra whatever, six months, nine months of life, and that we were a family, a team surrounding their loved one and making a difficult diagnosis and a difficult course as good as it could possibly be. And that I find that just so inspiring when I wake up every morning. I think, well, you know, we are really an institution that is taking exceptional care of our patients. And I could give you many examples.
Emily Kumler: I’m sure. Yeah, I mean, it has such a worldwide, you know, great reputation and that’s obviously what you’re hearing in personal anecdotes. But I think that the reputation of the institution itself is, you know, very well known. One of the things that I was actually kind of curious about was when you look up the sort of cancer survival rate statistics that the National Cancer Institute puts out, do you guys fall sort of in line with that or is there any comparative point where you can say like coming to Dana Farber has a competitive advantage, let’s say to like the national statistics?
Laurie Glimcher: Well, I think if you look at our patient satisfaction scores, they’re in the high 90 percentile, 96 or 97% that’s quite remarkable. We also receive more grant support from the National Cancer Institute than any other cancer center in the country, which is pretty remarkable because we’re smaller than some of the top cancer centers. We ranked number one in pediatric oncology this year. That’s the fifth time that that’s happened. We’re the only cancer center that has been number one five times or more in pediatric oncology. We also know that our publications are cited two to three times more often than any other cancer centers. So there are a lot of hard data points.
Emily Kumler: Yeah, no, and impact clearly.
Laurie Glimcher: And when it comes to mortality rates, survival rates, those aren’t known individually. But a study has been done on the 10 dedicated cancer centers, the ADCC cancer centers, and the mortality rates for the 10 of us are better than the rest of the many cancer centers in the country. So, as a group, our patients do better.
Emily Kumler: And so, you know, one of the things that I’m interested in in terms of the Pan Mass Challenges, you know, raising close to a billion dollars in contributions to Dana Farber exclusively. There is a couple of different ways we could go with this. One is how does having an organization that’s sort of like a grassroots organization, right? That doesn’t have a particular agenda other than to get you guys money so that you can innovate and treat and research and do all the great things that you’re trying to do to come up with new or better solutions to this epidemic compared to, you know, like some of the stuff that we heard out of Sloan Kettering last year, right, with conflicts of interest. Because I think this is sort of a phenomenal thing that they you know, raised, what was it like $56 million in donations just last year alone?
Laurie Glimcher: They did. They did. And I think in total we’ve raised, I want to say, 654 million. Billy Starr and his team, they’re so wonderful. It is the largest sporting event for a nonprofit institution in the world. It is Dana Farber’s largest single contributor. It accounts for more than 55% of the revenue of our Jimmy Fund. So you can imagine how grateful we are to the PMC and the tens of millions of dollars that they raise from riders each year. I have participated in the last four PMC events. Yeah, I wasn’t a bicycler. I run and I do other forms of activity, but my husband and I decided we would bike just before I came into the CEO position in an August three years ago. So we went out and bought good bikes and then we practiced, did some practice runs, and it was incredibly exhilarating. I mean it’s thousands of people and thousands of volunteers and everybody is just so inspired by the event. We have the survivors as well. I think we had about 950 this year. Survivors who either biked or served as volunteers. We had more than I think 6,700 cyclists from 43 states and 12 countries who ride every year. And as I said, over 950 of our PMC riders and volunteers are cancer survivors or current patients. We call them living proof of the organization’s mission to find a cure. And then we have, you know, over 150 Dana Farber employees who either are riders or they’re volunteers.
Emily Kumler: The turnout is unbelievable and I imagine that the impact of the event itself is as much almost a financial, the contributions that come through certainly make a difference, but I would imagine the morale that it creates is also really important for the overall mission and the work that everybody is doing, even in the patient’s work itself, right?
Laurie Glimcher: Absolutely. It is. It is just incredibly inspiring. I have been honored to be part of it for the last four years.
Emily Kumler: And so what is it in terms of the sort of donation or the, you know, the thinking about where you get money from? I mean especially in the role as CEO, right? That’s one of your primary functions is to probably make sure that there’s enough money coming in that the work can get done. And so how do you look at the PMC versus other donations? I mean, do you guys have conflicts of interests ruled out so that you can’t take money from certain people or certain organizations? Like you guys take the money from PMC, but you also take money obviously from lots of other entities. And I would imagine some of them are corporate and some of them are personal and foundations and whatnot.
Laurie Glimcher: Yes, there are many, many different donors to Dana Farber. Obviously. I think recent events have shown that one needs to take a very careful look at who is donating to us as we have seen from, as I said, recent events. We certainly are looking carefully now, and looking backwards now, as to our donors and whether there was any conflict of interest. So we’re in the middle of really making sure that we don’t accept money from individuals or groups that don’t have the standards of behavior that we expect.
Emily Kumler: You’re sort of alluding to Epstein it sounds like.
Laurie Glimcher: Yeah. Yeah. I think that was, you know…
Emily Kumler: I think we also have seen the impact of pharma donations, right, on different things and I think that is another, I mean there’s so much of this that I feel like is starting to come out that I can imagine it’s, you know, in your position you’re trying to make sure everything is above board.
Laurie Glimcher: Absolutely. At the time, a couple years ago, when Memorial Sloan Kettering ran into trouble, we hired a law firm at great expense to come in and make sure that our faculty were always doing the right thing and they did a very exhaustive examination. And I think we all can improve. But you know, my statement to the faculty has been, you know, even though some journals say you should just report potential conflicts or you should disclose potential relationships that affect this particular publication, our statement to our faculty is just disclose everything. You know, just every time you give a talk, every time you publish a paper, just put in every single thing that could potentially be a conflict. Let somebody else decide whether it is or not. Just state everything you’re doing that could possibly be considered as a conflict and just make it clear. It’s much simpler that way. That’s what, that’s what I’ve always done.
Emily Kumler: Yeah. No, I think that’s a much safer route, right?
Laurie Glimcher: Yeah. Because you know, the relationship between the private sector and academic medical centers is absolutely crucial for our patients. And I tell people, always put the patient first rather than be competitive with other researchers, be collaborative, you know, academic medical centers are going to make most of the basic discoveries. We’re the ones that are gonna find the new proteins that are critical in cancer, as we have. PDL1 and many others. I mean we have our fingerprints over more than half of the new cancer drugs that have been discovered in the last decade. And that’s because we have not only made basic discoveries here, but we have moved them forward to a point where they’re now ready to be worked on by pharmaceutical companies or spun out as companies from Dana Farber because that’s the way we’re going to get them most quickly to patients.
Emily Kumler: Well, and so let’s talk a little bit about that because I think one of the other things that I’m always struck by is just how expensive these treatments are. Right? So like immunotherapy is like six figures for one round of treatment. And you know, I sort of wonder in your position of power, really, how do you feel about the, you know, whether it’s like the lack of consistent funding, which I know you wrote about in the Boston Globe from the NIH or you know, the sort of the pharma companies making so much money off of these treatments that are still really in the sort of infancy of understanding their effectiveness?
Laurie Glimcher: Well, I think the new drugs that have come in for cancer, either because of precision medicine, so-called targeted therapeutics and immunotherapy have truly been transformative for our patients. I mean there are patients with melanoma who had stage four metastatic disease, which is always lethal, who are still alive today 10 to 15 years after receiving immunotherapy. The recent number that just came out, I want to say that over 50% of patients with metastatic melanoma have a survival of greater than five years now, which is truly extraordinary. And the same can be said for these targeted therapeutics like Gleevec who have changed a disease, chronic myelogenous leukemia that was lethal, into a manageable disease. These patients are living for years and years, so these aren’t me too drugs. I think years ago there were cancer drugs that may be extended a patient’s life by six weeks that cost a tremendous amount that places like the UK would not approve because they extended life by just so little and they cost so much. It’s important to remember that these new drugs that we’ve all been working on, with pharmaceutical companies, or have spun out from tech companies truly make an enormous difference in a patient’s life.
Emily Kumler: I would love to know if there is updated information because the only, the last sort of good data I could find was from stat news and I think the article was in March of 2017 and it was basically saying that it’s only 8% of cancer patients that would benefit from immunotherapy because there’s so many cancers that the FDA hasn’t approved for treatment like ovarian cancer or colon cancer.
Laurie Glimcher: That’s actually incorrect. There are four immunotherapy drugs that are currently being marketed. Two of them are so called checkpoint blockers. And those are drugs that activate the key immune cell, it’s called the T-cell, to come in and kill the tumor. They activate your own endogenous immune system to kill the tumor. There are about 10 or maybe even 11 types of cancer that have been shown to be responsive to immunotherapy, and that includes cancers like melanoma, lung cancer, liver cancer, kidney and bladder cancers, head and neck cancer, Merkel cell cancer, and a few others that actually can be responsive to immunotherapy, but not every patient with those 10 or 11 cancers responds. And then there are tumors that have been intransigent and nonresponsive, so-called cold tumors that don’t respond to immunotherapy. So two of the immunotherapeutics out there are directed against inhibitory receptors on T-cells, and those drugs are the PD1, PDL1 blockers and the blockers of CTLA4 which is another inhibitory receptor. The other two immunotherapy drugs are Car T cells and those are effective in some liquid malignancies, lymphoma and leukemia in particular. So taken altogether, I would say the numbers around 20% of all cancer patients would respond to immunotherapy. So clearly we’re at the tip of the iceberg here.
Emily Kumler: So wait, so when you say, just to make sure that I understand that correctly, so 20% of all cancer patients, that’s including the cancer patients that aren’t gonna be given immunotherapy.
Laurie Glimcher: Yes. All cancer patients, about 20% respond to immunotherapy when you compare that to 10 or 15 years ago is pretty remarkable.
Emily Kumler: Well, I mean I think it’s progress because I feel like one of the other things that is always is so frustrating to me is that if you look at the survival rates of cancer, and you take into consideration that people aren’t smoking the way that they were before, which we know is a cause of cancer. Like we haven’t moved the needle as much as you would have hoped. Since, you know, Nixon declared war on cancer in the 70s and we’ve spent billions of dollars working on it. And I don’t want to sound like a Debbie downer or something because I know everybody feels like we’re getting closer with immunotherapy, but in some ways I often question like, do we just not understand this disease? You know, it doesn’t seem like we have a handle on it in the ways that you would expect for the amount of innovation and brain power and money that has been spent on trying to figure out how to treat this.
Laurie Glimcher: I would say there was very little progress until about 15 to 20 years ago. You know, it was pretty much flat. You treated patients with cancer, with chemotherapy and radiation therapy and surgery, and if you had stage one cancer, you could be cured because it could be surgically removed if you had metastatic cancer, you know, your future wasn’t bright. But two amazing revolutions occurred in the last 15 years. One of them was the discovery that tumor cells arise from normal cells because they sustain genetic mutations and that launched the field of precision medicine or targeted genomics. So we offer every patient that’s seen at Dana Farber the opportunity to have their tumor sequenced. No other cancer center does that. And we can only do that because it’s not reimbursable by health care insurance companies because we’ve raised philanthropic funds and some of the funds that we raised through the PMC for example, go to supporting that: to allowing us to sequence the tumors of every patient who wants to have their tumor sequenced
Emily Kumler: And why would somebody want to do that, is probably an important thing to ask?
Laurie Glimcher: Why? Because we have some drugs that target those genetic mutations and I think we’ve identified now, we and other cancer centers, almost every genetic mutation that a patient tumor has and have developed a number of drugs that target that mutation. At Dana Farber, we were instrumental, for example, in developing drugs that target the mutation in the EGF receptor, which is common in about 20 to 30% of lung cancer patients and if you treat those patients with the drugs that target that receptor, they can experience amazing remissions that can last for years sometimes.
Emily Kumler: Which would nobody would have thought was possible fifteen or twenty years ago.
Laurie Glimcher: Which nobody would have thought was possible. I mean, when my mother developed lung cancer in 2008, there really was nothing for her. It was metastatic and there was, you know, immunotherapy wasn’t really available. Targeted therapeutics were at the beginning. Nowadays, we have lung cancer patients that have survived for years, years with metastatic lung cancer. That is unbelievable. The same thing for kidney cancer with immunotherapy and many other cancers. So I actually don’t agree with your assessment. The last 15 years have been remarkable. They have been an enormous inflection point for the treatment of cancer. The amount of knowledge we have now about the genetic mutations that drive cancer and the success of immunotherapy. I mean, immunotherapy has been around, we’ve tried to activate our own immune systems for over a century, starting with, with a surgeon in New York City, Dr. William Coley, who made the prescient observation that some of the, I think it was young men with sarcoma. He had several patients. He noticed that when he removed the tumor and the wound got infected, sometimes those tumors didn’t recur when they ordinarily would have. And so he said there must be some system in the body that when it’s responding to bacteria, also kills the cancer cell. And that of course was the immune system. You know, people were very skeptical but that he showed that if you made a bacterial lysate from those patients and bottled it up, he called Coley’s Toxins and it worked on some patients, but there was a huge amount of skepticism and then radiation therapy and chemotherapy. And of course Sidney Farber who founded the Dana Farber cancer center was the first person to cure childhood leukemia with chemotherapy. He’s really the father of modern chemotherapy. They supplanted Coley’s Toxins and they worked for some patients, but immunologists and cancer biologists have worked for a century on trying to activate the immune system. And they finally broke the barrier with those checkpoint blockers against two inhibitory receptors on the T lymphocyte, the ones I mentioned, that PD1, PDL1 pathway. And Dana Farber was obviously a part of that. And another receptor called CTLA4, which the drug Yervoy from Bristol Myers Squibb targeted. And that just changed the entire landscape of immunotherapy. I’m not saying we don’t have a long ways to go. We do. We still can only treat about 20% of all patients, but you know, prior to that, prior to the last 15 years we could treat 0% of patients with immunotherapy. It’s enormous progress. And if you look at the landscape now, we’re identifying dozens of new targets for immunotherapy.
Emily Kumler: So do you expect that the FDA will start approving this for other cancers soon?
New Speaker: Well, you can see that happening. For example, in triple negative breast cancer, which has been unresponsive to immunotherapy and now, actually discoveries by breast cancer and ovarian cancer, by Dr. Jean Zhao here at Dana Farber, a new kind of drug which had been approved, and the PARP inhibitors, also a new kind of drug. They were thought to target the tumor itself, but it turns out she showed, they also activate the immune system. So they have been shown recently to have some success in activating the immune system in breast cancer and ovarian cancer. Those drugs attack cell proliferation, but they also activate the immune system, the PARP inhibitors, a target, a pathway called DNA repair damage. And they targeted the tumor directly in ovarian cancer in particular, but they also have been shown to activate the immune system. So these are drugs that are a double whammy. They attack the growth of the tumor or paralyze the tumor and cause it to die and they simultaneously activate the immune system. So I feel like if you look at the way we’re treating cancer over the last hundreds of years, 20 years ago, we started to bend the curve. It became an exponential curve from a flat survival rate, didn’t change, to a exponential increase in survival rates. And right now with the number of new targets that have been discovered, we are at an incredible inflection point. Think of it this way: there are 20,000 human proteins, about 20,000 human genes and human proteins. Do you know how many of those are targeted by the drugs that are currently out in the market? Only about somewhere between 750 and a thousand. Think of all the targets and all the proteins that have been assumed to be non-druggable. Well they’re not non-druggable. We have a huge opportunity ahead of us. Things like transcription factors, for example, were assumed to be a non-targetable protein category, but what if you could degrade and that was because their shape, when you look at their protein shape, it’s very difficult to develop a drug that inhibits them, but the protein degradation technology, which is now the latest, I mean really remarkable technique in which you actually target a protein, not by finding a small molecule that disables them, but by degrading them, causing them to be degraded. And that’s work from Nathanael Gray and Eric Fischer here at Dana Farber and a few other scientists at other institutions. But this is our recent collaboration with Deerfield for example, where they’ve given us a tremendous amount of support to start figuring out how to degrade so many other proteins that have been previously considered to be undruggable. And we’ve seen success in that already. So to me, the future is even more promising than the last 15 years. And then the last 15 years have been remarkable.
Emily Kumler: Yeah, because you feel like now you’ve just sort of opened the door and you’ve realized this is possible. And what else could you do from here is really..
Laurie Glimcher: There’s so much we can do from here. Honestly, you know, this is an incredibly exciting time for cancer. I am hugely optimistic about our future, but we do need the funding, the research funding, and we’re not going to get that entirely from the government. Even though we do extremely well with the National Cancer Institute, it isn’t enough. So, sixty percent of the money we raise for research, only forty percent comes from the government. And the rest comes from alliances with pharmaceutical companies or corporate foundations, nonprofit foundations like the leukemia and lymphoma society, and from philanthropy, we could not do what we’re doing without philanthropy. And that’s why the PMC, one hundred percent of what they raise goes to research or patient care.
Emily Kumler: I hope she’s right, but it’s hard to ignore the fact that the National Cancer Institute has spent over $90 billion on research in the last 40 years. Well, it seems like immunotherapy, everybody thinks is going to be the ticket. I feel like there’s still a lot of big question marks. There’s still a lot of cancers that immunotherapy does not treat, and so obviously that would be a big area that you’d want to focus research on, but this idea that we need more money for more research, it does make me feel a little bit skeptical. So I wanted to go back to the Starrs and talk to them a little bit about how they’ve raised all this money, both technically, how did they do this, right? How did they turn this into such a massive fundraiser, but also how do they feel about generating so much for one place? Right? Like if this was an investment strategy, you would say like diversify, give the money to different scientists and see what other ideas you can come up with. They had a pretty stark response for me.
Billy Starr: I’m Billy Starr, I am the founder and executive director of the Pan Mass Challenge.
Meredith B-S: I am Meredith Beaton-Starr. I work as the Director of Engagement and the Liaison to Dana Farber Cancer Institute here at PMC part time. And then part time, I am an occupational therapist and integrative health coach at Brigham Women’s Hospital in the OSHA Center for Integrative Medicine.
Emily Kumler: Well, you guys are the largest donor to Dana Farber. I can’t imagine that you had that as a goal when you started because that’s sort of, I mean it’s just incredible. I think it’s the largest sporting charity event in the world.
Billy Starr: Well, that’s correct. Most people get their history wrong. We’ve been the largest fundraising event for the Jimmy Fund since 1984. I think it’s fair to say in the first decade, for me it was about getting this event launched, and even though by 1989 we had some 1200 riders. We were going to give a gift of over $1 million for the very first year. The nuts and bolts of building this event, you know, the way we did, took a considerable amount of time. It was also, I’ve worked for 10 years alone before I hired my first full time person in 1990. I probably would’ve done better by hiring sooner, but nonetheless, you know, the mission of funding cancer research really became much more of a center in the 90s and thereafter. As some money grew, the fundraising tools grew that we developed and the fact that we were able to just keep overhead so low, it was very much resonating with people. 1990 was the first time that I was passing through ninety cents on the dollar and then I start promoting that. And we’ve gone only one way then. We’re in our 13th consecutive year of 100% passthrough having just included our second strategic business plan in the last seven years. That hundred percent pass through turns out to be the critical aspect of galvanizing this type of aggressive dynamic fundraising as it’s been identified as the number one, the PMC DNA, more than riding on the weekend with loved ones, more than funding cancer research at Dana Farber itself. The hundred passthrough. So, the business model, you know, it took years for it to really grab aggressively, it has been proven to be quite successful, very dynamic. And now events all over the country are being modeled after it.
Emily Kumler: Well, and so I think, you know, there has been certainly in the last decade or so, a lot more interest in this idea of like what percentage goes to admin fees, right, in any kind of charitable organization. And I think in just in the last year or two, I know I’ve seen a lot of people who are sort of come out and said that’s well and good in some ways, but in other ways it does sort of miss the mark, right? You don’t want all the money going to, like if it’s a foundation of any, you know, like a typical wealthy family foundation where the kids are all on the payroll, right? Like that’s probably not great. But if you have an organization that has some admin fees but is delivering a massive impact, that also needs to be taken into consideration. And so I was sort of curious how you guys, how do you evaluate impact? I mean, I think you guys have raised so much money for Dana Farber and I almost wonder, you know, have you thought of diversifying? Like now that you have so much money coming in, have you thought of giving it to other cancer research institutes or other places and you know, how are you sort of measuring your own ROI in that way?
Billy Starr: So first of all, in rehearsal, what are the answers to your questions? No, we have a board. The board and the mission statement have truthfully never changed: funding cancer research at Dana Farber. If that were to happen in terms of funding other initiatives other than the fact that we took last year’s $56 million gift, it’s funded over 700 initiatives at Dana Farber. That would be a board decision and quite frankly that’s simply not going to happen. Robert Smith, a founding family board member, Josh Bekenstein, the chairman of Dana Farber on the board. That’s not going to happen nor do I want it to happen and that’s not what it was designed for. But, I also want to address about our staff and the comment about impact itself. Simply, we’ve now grown, we are 11 full time. We are not sacrificing building out what we have to do in terms of administrating correctly, building out the things that are in sync with fundraising initiatives. We have a kids program, we have a winter cycling program that is indoor. So we now have 11 people. We do have $6 million now. A fixed, gosh, I would tell you we have $11 billion, but we have 5 million of it underwritten with any time donation, but 6 million is paid through sponsorship, registration fees, and merchandise. So, if you were looking at 990 statement, they’d throw all of that under revenue. They’d say PMC is not giving a hundred percent, they’re giving 99%, something of that nature. But, we declare it quite clearly to our people that, you know, we have sponsors, we’re under them, they’re getting a commercial value for it, et cetera, et cetera, that their registration is paid to help underwrite the event, et cetera. So when we pay off that 6 million from those three vehicles, all your fundraising money goes into one bucket, which is given every year at the end of the year.
Emily Kumler: That’s sort of my point. Like, that’s a very small amount given how much you guys raise. And I just sort of think like from a philosophical perspective, personally, I think sort of like this idea of, you know, what is it like Salvation Army versus Red Cross I feel like is usually the typical example. And Red Cross has a, you know, very expensive executive team. But those executives would be making way more in the private sector. Right? And so sometimes this argument falls short for me. It doesn’t feel like people are recognizing that it’s a big organization and that it requires people who have skills, most likely that they’ve developed in the private sector running big organizations and you want a competitive environment in terms of hiring to bring those people on. So I’m not for a second trying to be critical of you. I mean you guys have low fees, but even if some people who have big fees, I think if you have an organization that’s got massive admin fees, but they’ve accomplished the goal that they’ve set out to accomplish, then bravo. Right? Like that still doesn’t mean that we shouldn’t give money to that organization. I think it’s sort of more of my point.
Billy Starr: Emily, that will forever be a gray area as to how people perceive the type of government, private sector, and nonprofit, how people determine other people’s efficiencies and of course, how they deliver the message of what’s achieved with the money that goes wherever it’s intended. You know, where you get the cynicism, that’s in government, I could certainly say one thing Trump’s done for the station right now, it’s proven how we need government. We need government because we seem to have a great lack of it. But in terms of determining our impact, typically in the last few years, we’ve done, I think an increasingly good job of explaining it. Our constituency, where the money goes, in both charts, video, public speaking by doctors who participate in the race themselves, the beneficiary of Dana Farber. And it very much resonates with our people.
Emily Kumler: Yeah. I mean, I think one of the things that struck me is overall looking at cancer rates, we can make a pretty clear argument that the absolute deaths are not improving, right? People are still dying. You know, you can actually make the argument, at a greater rate, given that people aren’t smoking. Like if you’re Bill Gates and you’re like, I’m going to eradicate polio in this country, you go in and you give everybody a polio vaccine, you can check the box, say, okay, I’ve accomplished this goal. This is what we set out to do in this project. And I think what’s interesting is that for you guys, you have so much money going into research and so I sort of wondered how do you evaluate, is that research that you’re paying for, heading in the right direction? Or like do you feel like it’s knocking down the barriers that wouldn’t otherwise get funding? And so, you know, I was struck by the fact that one of the sort of immunotherapy areas that seems to have a lot of hope or promise, I would say it’s like sort of too soon to say it’s a cure, it’s a fix, or you know, we don’t, it’s too early in that immunotherapy stuff to make those kinds of conclusions. But, it does seem like, you know, melanoma is one of these cancers that immunotherapy seems to have a very positive impact on. You know, Dana Farber has done a lot. Are there funds that you feel like you’re directing that you’re watching more carefully than others or are there projects that you feel like you’ve been able to raise the money for or get the green light on that maybe they wouldn’t have gotten government or pharma or other, you know, funding sources that they certainly have to fund? Or are you sort of leaving it up to them to decide these are our biggest needs and we’re going to direct the money that way? Because I know from the charts and all the information that you guys have out there, there’s a lot of funding going to a lot of different projects. And I thought from a personal perspective, like you’re responsible for this, you know, I sort of wonder how you evaluate all of that.
Billy Starr: I’m just saying that when I started, the childhood cancers were 20% curable. Now they’re 80% curable. Some cancers, and Meredith and I, we are extremely familiar, remain remarkably resistant to progress. And then I think back to a 1997 speech by David Nathan who worked with Sidney Farber, who was the past president, who I think just turned 90 and he spoke at a PMC event. And this is what he started with and he said well just consider this, everybody dies. And I’m not trying to make a holistic emotional commentary to you. But Meredith and I are extremely familiar with personal friends and doctors at Dana Farber who work in the more, the tougher cancers: brain cancer, pancreatic. And progress for what may be an early stage is brutally slow. Or when we go to these annual meetings, we see doctors, and you see their results charts and they go to work the next day and it’s not just for the pay check. So, I think you have to have a multi generational view of all of this. The other part I need to say is different than what you’re suggesting. I created this for the money to be unrestricted. That’s where this began and it wasn’t until the 90s that we started accepting restricted money when Dana Farber’s own senior management said, don’t turn away restricted money. It’s motivated, blah, blah, blah, and 28% of our gift is now restricted. That being said, I would never personally, be like Laurie Glimcher, a rich benefactor sitting on a board saying, hey, I need you to focus on this. She’s our leader. I defer to her as does my board and then they go chapter and verse. You know, the conversation that you bring is something they’d have to be discussing on a year-round basis, but it’s not to the center of our work. They said, you know what? This didn’t work. We, the PMC board, wants you to put it here. That’s not what we do.
Meredith B-S: I will say, Emily, back to your point again, when we talk about restricted teams. The word restriction is more just that they funneled their funds into a specific doctor or researcher or team at Dana Farber. That has been extraordinary. That’s one of the programs that I managed with our teams. A lot of them come to the Institute. They do tours, they go to the lab, they meet with the team, and they see where their money’s going and we are really excited about this. We bring people into the Institute all the time. It really makes that connection between riding your bike and seeing where your efforts and your fundraising goes. And so just to say again, back to the money just going to Dana Farber: it really advances cancer research across the globe. So many of the projects going on at Dana Farber, have cohorts at other of the NCI centers, the U.S. and globally. We have a team out of Connecticut, Team Brent, named after this boy Brent McCreesh who was diagnosed when he was 10 months old with neuroblastoma. He was seen at Yale and at Sloan Kettering and then he ended up coming to Children’s Hospital for surgery and Dana Farber where the neuroblastoma team is probably the best in the world. He is now 16 and doing really well. His team has raised over $7 million since they started riding and they give their money directly to the head of neuroblastoma. So this Dr. Lisa Diller, when they said, what do you need us to fund? She said there is not a MIBG room, which is a specific lead lined room that treats refractory neuroblastoma patients. There were none in New England. The closest one was in New York and there were only 10 in the country. So, I don’t know the exact price tag, but millions. And they kicked off the gifts and paid for this room, which now kids can come from anywhere, mostly in new England, to be treated in this lead lined room at Children’s Hospital. So even though it’s Dana Farber, it’s Children’s Hospital, it’s kids from everywhere, from all over the world who use this room that was funded by Team Brent of PMC.
Emily Kumler: I’m really struck by the fact that you guys have raised so much money because I mean obviously that is the thing that jumps out first, right?
Meredith B-S: Yup.
Emily Kumler: But the morale that’s created for the hospital, I can’t even imagine how important that is. If we talk about people who are dealing with childhood cancers that are really tough, to have this kind of community support, being a kid going into that room and hearing that it was another kid who raised the money for this and is now 16 it probably does wonders way beyond the dollars that are raised.
Billy Starr: So, certainly on a personal level, but it is interesting with the patient match programming and the same team McCreesh has been with us for a fairly long time, this also typical of a patient, what we call a pedal partner program. Now we are matching hundreds of patients and their families with teams. And of course, to your comment, absolutely true, but I would further say that all of these well intended people would never ever be able to raise the kind of money they do without the education, without the PMC framework, and without the fundraising tools. So, you know, you say to someone, we need $7 million, and somebody dies and one year they throw a cocktail party and they reach $100,000. If they run that event the next year, they’re not going to raise on $2,000. But in the PMC and with that kind of synergy, it actually grows. They grow the team; they grow the money. They’re part of an increasingly larger gift, and are the weekend itself is very dynamic.
Emily Kumler: So what are some of the lessons that you’ve learned along the way? Any sort of mistakes that happened or things that you, look back on and you think, oh, we should’ve skipped that?
Billy Starr: I should have met my wife sooner.
Emily Kumler: Aw.
Billy Starr: But it gave me a chance to do things my way without her telling me how to do them. You know, we grew slowly, if you’ve done your studying, we really did. We have very dedicated people. I think, you know, this being our 40th year, I have 46 active people who’ve been with the event 35 years or more. I’ve got 750 people who have been in this event for 20 years more. I mean, you won’t find anything like this.
Emily Kumler: Yeah, no, that’s incredible.
Meredith B-S: You know, I know when I started in the PMC in the 80s, I didn’t know hardly anyone with cancer. And now all of us, I mean we’re all getting older, but, you know, to your point earlier about some of the statistics, just cancer is everywhere. We all know someone with cancer and unfortunately and fortunately that’s why the PMC resonates with so many people. And that feeling of helplessness when someone you love is diagnosed, or being treated for, or dies of cancer, you know, this is a way to empower people to make a difference and really be able to do something active, something that you know, really inspires them and friends and family. So, so many of our teams come together around someone who’s diagnosed with cancer and you know, ironically we have people who’ve been riding for years who, you know, will write to us and say, well now I’m a patient at Dana Farber, so I guess I’m funding my own treatment. You know, I’ve been funding my treatment without knowing it. We have over a hundred Dana Farber staff who ride the PMC and they’re funding their own research labs.
Emily Kumler: It seems so clear to me that the PMC is both a huge morale booster and also clearly the largest fundraiser for Dana Farber. But I wanted to talk to somebody who is using the money from the PMC to fund research that they might not otherwise get any funding for because I think some of the experimental stuff that’s happening is much harder to get money for. So we found a doctor who’s a pediatric oncologist, and in the course of talking to her, we also learned that she was a patient at Dana Farber not that long ago.
Katie Janeway: So, I’m Katie Janeway. I’m a pediatric oncologist at Dana Farber in Boston children’s hospital. I specialize in care of sarcoma as a specifically osteosarcoma and I’m also the director of clinical genomics here at Dana Farber.
Emily Kumler: Can you just sort of explain in a lay person’s way what you do and why you need funding?
Katie Janeway: Sure. So I’ll focus in this interview on the work that I do as director of clinical genomics and as a researcher who focuses on what’s called precision oncology. All oncology care is precise, meaning that we’re very careful about coming up with a diagnosis and we use that diagnosis, and also the stage, meaning how extensive is the cancer? To carefully select a treatment plan. But there’s been a major sort of revolution in science and health care in the past 10 years. And we put together that revolution in the genomics with recent developments in the drugs that we have available to us to create a sort of new paradigm for being precise in our care of oncology patients.
Emily Kumler: And so that means like looking at the specific tumor markers or something that you can then treat in a different way than we used to do, where we would just sort of treat the whole body?
Katie Janeway: That’s correct. So our traditional treatment for cancer is what we call a sort of, to use a wastebasket term, chemotherapy. And what chemotherapy does is, it kills rapidly dividing cells. Cancer is usually the most rapidly dividing cell in the body. The chemotherapy works the most against the cancer but also affects other rapidly dividing cells like your hair, which is why hair tends to fall out during cancer chemotherapy treatment. In this new paradigm of precision oncology, what we do is we use very sophisticated genomic sequencing tasks where we can read the DNA or the instruction manual of the cells in the cancer that particular patient has and we identify the errors that are sort of turning the cancer on or driving it. And that’s one piece, what we call tumor profiling. The other piece is that we have more precise drugs now, which we call targeted therapy or molecularly targeted therapy and those drugs specifically counter out act or turn off the effect of those gene errors or gene abnormalities that are driving the cancer.
Emily Kumler: And that’s really important because when you’re doing chemotherapy the old way, you had to kill a lot of really healthy cells in the process, right?
Katie Janeway: That’s right.
Emily Kumler: The goal with this sort of new technology or new, you know, medication is to kill less of the healthy cells. And really focus in on the cancer cells. Is that accurate?
Katie Janeway: That’s absolutely correct and so people who are taking these new molecularly targeted therapies, there are a couple of advantages. First, they tend to be oral medications. They’re taken as a pill, whereas the old chemotherapy was given intravenously. What that means is you can receive your treatment at home for the most part without admission to the hospital, without frequent visits to the doctor. And then because they are specifically counteracting something that’s abnormal in the cancer cell, they tend to have much fewer side effects such that people tend to be able to go about their usual activities of life. And for the children that I treat, that tends to mean going to school, playing with their friends, being home with their siblings and their parents.
Emily Kumler: Which is incredible.
Katie Janeway: It is incredible and it’s a really transformative and changed, really, the practice of oncology in those settings where we’re able to successfully use precision oncology.
Emily Kumler: With regards to pediatrics specifically, this is just sort of a random question that occurred to me, but like do kids have more rapidly dividing cells that are not cancerous? Because they’re growing?
Katie Janeway: Oh, this is a great question. So the real question you’re asking is does the chemotherapy have more side effects for a young person? Because their bodies are also growing? The answer to that question is in some ways no and in some ways, yes. So for the what we call the acute side effects, which is what happens right away, those tend to be the same in adults and children. But one of the things that we’re really concerned about when treating children with cancer is what are the long-term side effects or what we call the late effects? Does the chemotherapy itself cause problems later down the road? Because as we cure more and more childhood cancers, we have to think about how does that impact their life, you know, long term. And we do see some specific concerns or side effects related to that sort of long-term view of the side effects.
Emily Kumler: And so that’s not the kind of thing that can be combated with these more precise treatments?
Katie Janeway: Well, it’s a great question. We don’t know yet. Long term takes time. That’s right. So this precision oncology approach is relatively new. The Pan Mass Challenge funds that we’ve received through the team Precision for Kids, who rides our precision oncology research in children, is relatively new. We’ve been, you know, at this for less than 10 years. We don’t yet know whether these new, more precise medications that have fewer side effects in the short term also have fewer side effects in the long term.
Emily Kumler: And so how many years have you been riding?
Katie Janeway: So, 2019 with my first year riding. I am not a cyclist historically.
Emily Kumler: Well, it sounds like you are now.
Katie Janeway: Now I have ridden from Wellesley to Provincetown and it was an amazing experience to see how many people are engaged with raising money for the research that we do at Dana Farber Cancer Institute as both a researcher and myself as a patient who had leukemia and was treated at the Dana Farber, it was overwhelming to see all of the cyclists who have raised money and who come and spent two days of their life in such a, I don’t want to use the word grueling, but such an incredible commitment of time and physical activity is just amazing and overwhelming.
Emily Kumler: You were treated at Dana Farber. How old were you?
Katie Janeway: I was treated a little bit over five years ago. I was in my early forties.
Emily Kumler: And you were working there then?
Katie Janeway: Yes, I was.
Emily Kumler: Wow. You’ve really had the full experience.
Katie Janeway: That is true. I have had the full experience and people sometimes ask me, you know, how did that change things for you? I have always been passionate about cancer research, about clinical care of oncology patients. I have always believed that it is incredibly important and obviously felt that I work at an amazing place and with incredible colleagues who are really driving the field forward. I think having cancer and being a patient here myself only strengthened that belief and deepened it into also a very personal experience and a family experience. So my husband actually rode the PMC challenge with me. And we both, you know, raised money for the team.
Emily Kumler: I mean that’s incredible. I feel like it’s such an interesting perspective to have to be sort of on the clinical side. Right? And then also be on the patient side. Those are very different experiences, I would imagine.
Katie Janeway: Yes, they are.
Emily Kumler: Although you knew you were in good hands, surely everybody who works with you wanting to make sure you were properly taken care of, that’s probably really nice.
Katie Janeway: Yeah, no, I mean I think I have a huge amount of trust in the institution and in the medical system that surrounds the care of my patients and surrounded me. So, I actually didn’t ask for any special treatment because I kind of think the standard treatment that we get, and provide, is really exceptional.
Emily Kumler: And so if you had a magical crystal ball, I guess having been on both sides of this, can you foresee any other either reworkings or big breakthroughs in terms of cancer treatment in the next say 50 years?
Katie Janeway: I am sure that there are many more breakthroughs coming, exactly where those will come from is sometimes difficult to predict. The things that I’m looking forward to in the near future are being able to figure out how to use immunotherapy in cancer types where we haven’t quite been able to harness the power of the immune system yet. We’re also, in the precision oncology fields, starting to be thinking more creatively. So far we’ve mostly used one drug or two drugs that work kind of in the same against the same target in concert. And we’re starting to think more creatively about what we call combination therapy, where we take for example a targeted therapy, molecularly targeted therapy and immunotherapy and use those together just as we did it with chemotherapy, you know, decades ago when we first started using chemotherapy. So those are the two things on the near horizon that I am most excited about. I did want to mention, in terms of our precision oncology work, that’s funded by the Pan Mass Challenge, it is focused on children with difficult to treat cancers and not specifically focused on women. But I think it has a huge impact on women in that when we’re able to use these molecularly targeted therapies after performing tumor profiling because the medications are taken orally and because they have fewer side effects, it has a huge impact on their caregivers. Research has shown that in childhood cancer, the primary caregiver who’s with the child in the oncology clinic in the hospital is most often the mother. And so, I think this approach where we decrease side effects and increased efficacy of treatment by using tumor profiling has the impact on the caregiver who’s often the mother of allowing them to return to their life as well, whether it be a career and a job or having that extra time freed up from the hospital to care for the other children in the house.
Emily Kumler: That’s such an important point to make because I feel like that sort of secondary effect or whatever you would call it, is really, really important. And I also would imagine that it helps with the child’s sort of developmental milestones at school and whatnot, which is something certainly every mother worries about, right? If your kid misses a year of school on top of worrying about their mortality, you’re also worried about how they’re going to catch up and social stuff. And so I would imagine that that has a huge impact on the whole family unit. Yeah.
Katie Janeway: That’s right. It has a huge impact. So where we’re able to make the precision oncology approach work has an impact not only for the child but everybody surrounding the child, including very often the primary caregiver through the cancer journey which is, for children, often the mother.
Emily Kumler: So will you talk a little bit about what kind of funding you guys have received from the PMC and what you use it for?
Katie Janeway: Certainly. So, the precision oncology for children is supported by the Precision for Kids team, that I run, is focused on younger children, adolescents, and young adults who have more difficult to treat what we call solid cancers. Meaning there are lumps and bumps that occur in the body and we focus on the solid cancers outside the brain for these most challenging to treat cancers for every patient who enters our study. We are conducting pretty comprehensive tumor profiling to try to find those gene abnormalities and then we provide additional interpretation or information for the doctor so that they can then go on to select a clinical trial or a drug that’s already available for that child, based on the tumor profiling that we have performed. And we have right now almost 500 children who are participating in the study. And again all of that is supported by philanthropic funds and a huge amount of that is from the Pan Mass Challenge funding. And within the group of children that we’ve looked at so far, which is about 350 of these children with very difficult to treat cancers, we already have, you know, a handful of patients whose lives have been completely transformed by this precision oncology approach where they’ve gone from having difficult to diagnose or difficult to treat cancers, to having a precise diagnosis, to having the identification of one of these gene errors that’s driving the cancers to receiving one of these match targeted therapies and having tumors that were progressing on chemotherapy and were metastatic suddenly responding to the targeted therapy. And having way fewer side effects and allowing them to go back to school, and to be home with their families and their parents instead of in the hospital receiving treatment with a lot of side effects.
Emily Kumler: I mean, I think metastatic is such an important point to make because I actually just learned recently that I can’t, I don’t want to mess up the number, but let’s say 80%, it might be even more than that, of research funding goes to cancers that are localized versus you know, metastasized cancer, which is what kills us. Right? That’s really fascinating to me that we’re spending all this money on the localized cancer, which may or may not turn into a metastasized cancer. So that’s really interesting to me that this treatment is, is it focused on metastasized cancer or it’s not that specific, but it includes that.
Katie Janeway: It’s not that specific. It’s not really focused on addressing the metastatic cancer. But by more effectively addressing the cancer as a whole, it can also impact the cancer that’s spread out outside of its initial site or the metastatic site. And so you know we can impact the metastatic spread as well.
Emily Kumler: I mean that’s a huge result I would imagine.
Katie Janeway: No, it’s huge. For the children and the families where we’ve had the success of the precision oncology approach, it’s really transformative. I mean, you know, just to give a small vignette, we had a patient with huge amount of tumor burden throughout the lungs. The cancer never really had a clear diagnosis. And we were able to find what we call a rearrangement, which is where two genes switch places activating something called NTRK. We had a phase two clinical trial of a new drug Opana, which was an NTRK inhibitor and the patient went on that trial and the tumors basically shrank away to nothing. Even the ones that have metastasized and you know, she was able to return to school. Her hair grew back, really transformative for her.
Emily Kumler: With the 500 kids in the study, I mean I can just imagine some parent is listening and thinking like, how do I get my kid into that? Is it closed?
Katie Janeway: No, we’re still enrolling patients. The kind of neat thing about this study is because these cancers are rare, we’re working with a number of other institutions across the country. So there are 11 other institutions where the study is open, it’s called the GAIN, which stands for genomic assessment informs novel therapy consortium. Patients can go to any one of those institutions to sign up. And we’re also able to, in certain circumstances allow the patient to enter without traveling to one of those centers. But by discussing the study with us on the telephone.
Emily Kumler: That’s also pretty revolutionary I would think it is.
Katie Janeway: It’s a pretty unique situation. But the truth is that what we really need in order to do the tumor profiling is just a small sample of the tumor that’s already been removed from the child’s body for the purposes of doing a biopsy to identify the cancer or having a surgery to treat the cancer.
Emily Kumler: And so this is again sort of an outlier question, but it occurs to me that, it seems like there’s so many of these kinds of mutations where like it’s, you know, different within one body to the next and even within one tumor right, to the next? As you’ve gotten into this more sort of precision focused treatments and obviously research, like is there anything that you sort of had thought of that you are now rethinking or any part of this that has been surprising to you?
Katie Janeway: We are often surprised by what gene abnormality or mutation we find in a particular cancer. That’s why in some ways the tumor profiling approach is so important because what you’re doing is instead of trying to guess what the cancer has and doing one test after another to try to find that abnormality, you’re just saying, let’s see if the tumor has any one of these hundreds of abnormalities that I’m able to test for using this new testing approach. And so it allows us to find those surprising or unexpected gene abnormalities that are driving the cancer. Whereas previously we had to guess what might be there and do one test after another to try to find what we thought might be there.
Emily Kumler: Well, and you don’t know what you don’t know. So like, if you don’t have a test for it, it doesn’t mean that there isn’t one. It just means you don’t have a way of identifying it. So if you didn’t have the funding from the PMC, would this study still go on?
New Speaker: No, it would not. We certainly have applied for grants for this type of research, but it is a difficult type of research to obtain traditional grant funding for. Traditional grant funding plays an incredibly important role in research in cancer. I don’t want to understate that. But there are types of research like this that are what we call translational, meaning they sit between the basic science laboratories and our sort of standard clinical care that are more difficult to fund in our traditional grant funding structure. So without philanthropic funds and funds from the PMs challenge, we certainly would not be able to do this study.
Emily Kumler: So then is it a correct assessment that you’re sort of able to take risks with research because this money is sort of freely given?
Katie Janeway: Yeah, it allows us to be more innovative. It allows us to conduct an early study that informs the grant application that perhaps is more risky in terms of people aren’t sure what the outcome is going to be when you embark on a study like this.
Emily Kumler: So how does it work internally? You basically have a research project that you want to do and then you have your own teams specifically to raise money for this project, right? So can anybody at the hospital or any patient create a team?
Katie Janeway: There are a wide variety of teams that raise money for very specific research programs or specific investigators. And I do encourage potential riders to connect with whatever type of Pan Mass Challenge team or fundraising inspires them the most because it is really important to be inspired by what you’re riding for. And as a rider myself, I have to say that it is an incredible experience to really reach out to people and explain to them why it is that you’re riding, why the fundraising is important. I encourage riders to look for the cause that allows them to do that.
Emily Kumler: I’m Emily Kumler and that was Empowered Health. Thanks for joining us. Don’t forget to check out our website empoweredhealthshow.com for all the show notes, links to everything that was mentioned in the episode, as well as a chance to sign up for our newsletter and get some extra fun tidbits. See you next week.