The Leukemia & Lymphoma Society (LLS), a New York-based charity, raises more than $300 million a year, with an average donation of just $75. Amassing their huge network of grassroots donors has helped the organization fund more than $1 billion for education and research to treat blood cancers.
In this interview from The Business of Giving, Dr. Louis DeGennaro, President & CEO of LLS, talks about the charity’s success in attracting small donors to help deal with blood cancers–the third-leading cause of U.S. cancer deaths. He also discusses the organization’s research grants to speed development of promising therapies and their First Connection program that matches newly diagnosed patients and their families with survivors for personalized peer support.
The following is a conversation between Dr. Louis DeGennaro, President and CEO of The Leukemia and Lymphoma Society, and Denver Frederick, host of The Business of Giving on AM 970 The Answer in New York City.
Denver: When a nonprofit organization has provided $1 billion in research funding for a disease, that is a remarkable milestone. The Leukemia and Lymphoma Society reached that milestone a short while ago, and they have equally remarkable results to match. So, it is indeed my pleasure to introduce their President and CEO, Dr. Louis DeGennaro. Good evening, Dr. DeGennaro, and welcome to The Business of Giving!
Dr. Lou: Thank you, Denver! Very happy to be here.
Denver: Tell us about The Leukemia & Lymphoma Society, commonly known as LLS. Also, a bit about the history of the organization–your mission and goals.
Dr. Lou: Happy to do so! The Leukemia & Lymphoma Society was founded in 1949 by a father and mother who lost their 16-year- old son to leukemia. And their goal at the time was to raise funds, support research, and find a cure. And frankly, we’ve been true to their guidance ever since. As you mentioned, last year, we jumped a major milestone– we’ve deployed over $ 1 billion dollars to support research worldwide.
Dr. Lou: That support has led to the discovery of virtually every modern therapy used to treat the blood cancers. Cancers of the blood affect the red blood cells, the white blood cells, the bone, and bone marrow. They are a class of about 140 different diseases–the ones people are most familiar with: leukemia, lymphoma, multiple myeloma, and then a host of other more rare diseases. Something that your listeners might be interested in knowing.. and perhaps would find shocking… is that when you take these diseases together as a group–the blood cancers–they are the third largest cancer killer in the United States.
And this provides a huge unmet medical need. Again, that’s why The Leukemia and Lymphoma Society exists. We exist to find cures, and to make certain that patients have access to those life-saving therapies.
Denver: How many Americans have been diagnosed with blood cancer?
Dr. Lou: There are about 200,000 new diagnoses per year. About a million North Americans currently live with the consequences of a blood cancer diagnosis.
“There are patients today with one form of blood cancer–chronic myeloid leukemia–who treat their disease at home… taking two pills a day. They’ll live a normal, long and healthy life. They’ll die from something else, not their leukemia. And we’re very proud of those advances.”
Denver: Is there an early detection for a blood cancer?
Dr. Lou: Sadly, no. This is one of the major issues for the blood cancers. We don’t know what causes these diseases, so it’s difficult to talk about a prevention strategy.
Someday, I’d love to come back and talk about prevention. The science and the medicine just aren’t there today. In addition, there’s no early detection. There’s no mammogram for leukemia or PSA test for multiple myeloma. As a consequence, patients present with a full-blown disease to their physician. So again, the bow of our ship has been research because we want the physicians- when they see that patient with a full-blown disease—to be able to say, “I have an effective therapy for you.”
Denver: Got ya!
Dr. Lou: And we’ve been very successful. Since the 1960s, the survival rate for these blood cancers– depending on the disease– has doubled, tripled, even quadrupled. There are patients today with one form of blood cancer–chronic myeloid leukemia–who treat their disease at home… taking two pills a day. They’ll live a normal, long and healthy life. They’ll die from something else, not their leukemia. And we’re very proud of those advances.
Denver: Go into a bit more depth on that. The way we treat and research blood cancer today– compared to 20-25 years ago– this evolution has truly been astounding. What were some of the milestones along the way that got us to the point where you could take pills at home?
Dr. Lou: There were two major advances that The Leukemia and Lymphoma Society actually helped to drive. One occurred in 1999-2000, and that was the advent of a kind of therapy called “targeted therapy.” Emblematic of it is a drug called “Glivec.” It’s the drug that treats chronic myeloid leukemia–the leukemia I just mentioned a minute ago. If you were diagnosed with CML, as it’s called, in 1999, your physician would tell you you had a three- year life expectancy. Driven by research funded by the Leukemia and Lymphoma Society, in the year 2000, the FDA approved the drug called “Glivec.” That drug is unique and was incredibly unique back then, in that it targets the cancer and leaves the good cells of the body alone.
Dr. Lou: So unlike the sledgehammer of chemotherapy–which is toxic to good cells as well as bad cells…
“It is fertile ground, and we have made substantial progress. Blood cancer research tends to be the tip of the spear in the fight against cancer.”
Denver: As bad as the disease sometimes!
Dr. Lou: Absolutely! This drug targets the cancer, leaves the good cells in the body alone, and 90% of newly-diagnosed CML patients go into a deep and durable remission. On Glivec, they live… as I said earlier… long, healthy productive lives and probably die of something else.
So, this was fundamental. This was a paradigm shift in the way scientists and physicians think about treating cancer. Suddenly, you could think about treating cancer with an agent that attacks the cancer specifically. Fast forward to last year–or two years ago–another major breakthrough. It’s called immunotherapy–using the patient’s own immune system to find and attack and eliminate the cancer. We pioneered this for blood cancers in the treatment of children with difficult-to-treat leukemia, and adults with a difficult-to-treat leukemia called “chronic lymphocytic leukemia.” In both those cases, the “cure” rate, I don’t get to used that word frequently…
Denver: I see it’s becoming more frequent, though.
Dr. Lou: The cure rate is substantial. It’s worth dwelling on “immunotherapy” just a moment more.
Denver: Please do!
Dr. Lou: So, it was breaking news in 2012 and 2013… Immunotherapy. I’m reminded of a pop singer with a breakout hit.
Denver: An overnight sensation!
Dr. Lou: That’s exactly right, and that’s the way we tend to think about it. But when you look at that pop singer and ask how long they’ve been practicing their craft, they’ve been practicing it for 20 years… before they had that overnight sensation hit.
Dr. Lou: This was the case in immunotherapy as well. The Leukemia and Lymphoma Society LLS began funding that work in 1998. From 1998 until the breakthrough in 2012, we’ve invested over $ 20 million dollars to make it work. This is the natural course of research; it takes time, patience and focus.
Denver: You have to have the long view!
Dr. Lou: You do have to have the long view, and I think this also speaks to the quality of the research that we fund, and our process for identifying that research. We stuck with immunotherapy even through times when it fell out of scientific favor broadly. But because of our expertise in the blood cancers, we really understood the potential promise of that therapy and stuck with it for the long haul. What excites me the most about immunotherapy…I’m certainly excited about it for blood cancer patients. But even more so, now it’s being tested in many other forms of cancer: breast, colon, prostate, ovarian cancer, even pancreatic cancer. There’s great promise. We pioneered it in the blood cancers.
Denver: You said that a couple of times right now, “We pioneered it in the blood cancers.” I’d be curious about this… It does seem that you have had an inordinate number of discoveries–breakthrough discoveries– pioneered in the blood cancers. I think we can go all the way back to Sidney Farber…
Dr. Lou: Yes.
Denver: … the Father of Modern Chemotherapy, at what is now the Dana-Farber Institute. So, much of what you’ve done in the blood cancers not only helps other cancers, but has been used to treat other diseases. Is there something about research in the blood cancers that makes this a particularly fertile ground? If there is, what would it be?
Dr. Lou: It is fertile ground, and we have made substantial progress. Blood cancer research tends to be the tip of the spear in the fight against cancer. From a research perspective, I think there’s one fundamental reason for that. That is: when one draws blood from a blood cancer patient, one has the actual cancer in one’s hands to study immediately. This is in contrast to what happens in other forms of cancer.
With solid tumors, a biopsy has to be taken from the patient and manipulated in the laboratory before it gets studied. Sadly, that manipulation changes the disease, so that it doesn’t really reflect its nature in the patient. So in this case, with blood cancers, we’re looking in the right place at the right time to be able to make these advances. I’ll give you a data point: if you count up all of the newly-approved cancer drugs… newly approved by the FDA since the year 2000…it’s about 65 drugs. Forty percent of them were approved first for a blood cancer…and then went on to be used to treat other cancers and other diseases.
For example, there’s a drug called Rituxan…
Denver: Yes, arthritis right?
Dr. Lou: …that was devised for blood cancer treatment in the late 1990s. It’s now used to treat rheumatoid arthritis.
Denver: That’s unbelievable!
Dr. Lou: It had great effect, not only in developing treatments for the blood cancers and improving the survival rates, as I described a minute ago, but other cancers… and now even other diseases.
Denver: And it continues, I think, even in the pipeline. Right now, there are about 800 or 900 under review…medicines and vaccines…and over 300 are for the blood cancers! So, you continue to make progress.
Dr. Lou: Yeah, this gives me great hope. We’ve funded substantial research in academic centers all around the world to lay the groundwork for this. The pharmaceutical industry, at the same time, has been remarkably productive. If you will, they’ve been populating the medicine chest with quality agents–targeted agents like we described earlier–and immunotherapies– that are now having substantial impact on the successful outcomes for blood cancer patients.
“I can do something at LLS that we could never do when I was in Big Pharma. If LLS convenes a meeting and invites the Food and Drug Administration–the FDA–they actually come.”
Denver: Well, this leads me to ask you a question about your business model, which is the “Therapy Acceleration Program,” wherein you’re trying to align all the actors in a way where they’ll optimize their efforts. Tell us about this approach, how it works and the advantages you think it holds.
Dr. Lou: We recognized the gap about 10 years ago, and the gap was: there were small biotechnology companies in existence at the time that had agents that might be valuable in treating blood cancers. But they weren’t developing them for the blood cancers. There are a lot reasons for that; there wasn’t much capital in the market for small biotechnology companies 10 years ago. The business model for the pharmaceutical industry has the industry shying away from diseases with relatively small patient populations– like the blood cancers. And so we saw that opportunity, and we stepped in with what we called the “Therapy Acceleration Program.”
The goal is exactly what the name suggests: accelerate the rate at which new therapies are brought into the healthcare arena for blood cancer patients. And we did this by surveying the landscape of these small companies, finding those companies that had agents that we believed were promising for the treatment of blood cancers. And then we partnered with those companies, providing non-dilutive capital. And far more! We provide expertise and access to key opinion leaders. We even bring the, if you will, The Good Housekeeping Seal of The Leukemia and Lymphoma Society.
Denver: You really aligned the actors in an intelligent fashion.
Dr. Lou: That’s exactly right. We bring something else into the arena that’s quite unique for organizations like The Leukemia and Lymphoma Society. Because of our history– you said it well — we can bring all the players in the ecosystem of innovation into alignment around a common goal. Our academic research grants bring academic scientists and physicians into the fold. The Therapy Acceleration Program allows us to partner with biotech and pharma. I spent 15 years of my career in biotech…
Denver: You are the perfect guy for this job.
Dr. Lou: And I can do something at LLS that we could never do when I was in Big Pharma. If LLS convenes a meeting and invites the Food and Drug Administration–the FDA– they actually come. We can’t influence them, but we can educate them. We can educate them about the unmet medical needs of patients. We can educate them about the state-of-the-art of the science and the medicine. So when a new therapy comes forward, they can be in a better place to make a sound judgement.
So yes, over the last 10 years, we’ve partnered with biotech and pharma in a substantial way. We’ve accelerated the approval of several new drugs. And in the process, we’ve been able to bring all of these key players together– aligned with patients and aligned with providers–so that patients have access to new, innovative, cutting-edge therapies.
“The patients that enroll in clinical trials, frankly for me, are national heroes.”
Denver: Exactly what the field needs! Looking at the field in a much broader context for a moment: you were on a panel, out at the Milken Institute Global Conference, recently. They were discussing the National Moonshot Initiative. This is a $1 billion effort–hopefully to eliminate cancer– that Vice President Joe Biden is spearheading. Tell us about this promise of the Cancer Moonshot and where you see LLS aligned with their goals.
Dr. Lou: I’m very excited about the Cancer Moonshot and the potential. There’s a short time frame to make it happen, I believe the people that are in place, like Greg Simon, who’s now appointed the leader under VP Biden, who can really move things quickly. There are three themes that resonate with me… and resonate with what we’re doing at LLS: precision medicine–the right drug, to the right patient, at the right time. Again, we’ve pioneered this in the blood cancers in the year 2000 with that drug called “Glivec.” The patient has chronic myeloid leukemia. They have a particular molecular marker; it’s called the Philadelphia Chromosome. Because of where it was described and discovered, they get Glivec. This is precision medicine–the right drug, to the right patient, at the right time.
Dr. Lou: One of the thematic areas for the moonshot is precision medicine, I think this is very important. A second theme is sharing of data. We all know how important teamwork is, how important sharing of data is. Bringing this data together in a robust way, we’ll accelerate the rate new therapies…
Denver: No doubt, wisdom of crowds working on the data.
Dr. Lou: …can come forward. The third theme that I think is vitally important– and should be on the radar screen of your listeners– is enrollment in clinical trials. Advances in the treatment of cancer cannot happen without patients enrolling in clinical trials. This is the ultimate test in the process of delivering a new therapy into the healthcare arena. Sadly, fewer than 5% of cancer patients enroll in clinical trials–that’s across all cancers. In the blood cancers, it’s a bit better, about 14%.
But this is a major bottleneck, and we need to do better at educating patients about clinical trials. There are a lot of myths: “I’m gonna be a guinea pig; I’m gonna get a placebo.”
Dr. Lou: The Leukemia and Lymphoma Society has programs to educate people about the value of clinical trials, and precisely what’s involved in a clinical trial. I think we have to change the way we talk about trials as well. Physicians and drug developers tend to think of them like experiments, and the patients who enroll as subjects need to change that language. The patients that enroll in clinical trials, frankly for me, are national heroes. These are people who give of themselves to advance new therapies for themselves and for other patients in the future.
Denver: You’ve been so effective in making the patient central, and you’re actually right. I think sometimes with clinical trials, we think of the researcher as being central– and what information they’re going to get to help advance to the next stage. That’s not the way to think about it, particularly if you’re trying to encourage people to enroll.
Dr. Lou: That’s absolutely right! And I think through the Moonshot Initiative and the bully pulpit they’ll have: if we can educate more people about the value of clinical trials, it will be a boon to all patients.
Denver: Speaking of patients, LLS provides support services directly to patients and their families… The patient is at the very center of every decision and activity that you undertake. One activity of particular interest is: The First Connection. Tell us about that.
Dr. Lou: We’ve spoken a lot so far about what we’re doing on the research side. But you’re absolutely right. Patients are number one for us, and we have services directly to patients. The First Connection is–what I’ll call– an individualized support group.
We recognized that the shock of a cancer diagnosis is impactful for patients, and we want to find ways to support them. Through the The First Connection program, we connect a newly-diagnosed patient with a patient who has survived precisely the same diagnosis.
Denver: I love that idea!
Dr. Lou: Who better to provide support than a fellow patient who has been through it?
Denver: And probably also good for the fellow patient who’s been through it!
Dr. Lou: No doubt about it! We recruit and train these patients. We make certain that they understand the role that they’re playing. And they’re very enthusiastic about supporting newly-diagnosed patients as they go through their experience with cancer. We found this to be a very, very effective way of helping patients. It’s one of many that we have. We do have traditional support groups as well.
Of course, we have free educational material. We run webinars where we bring cancer experts to the web and to the telephone to describe the latest treatments. And then we open these up to questions. A typical program like that will have over one thousand patients and caregivers dialing in from all around the world. We’re happy to provide that. As you know, we also have financial aid for patients as well.
Denver: That would come with the diagnosis as well– financial hardship. And even for people who have insurance, sometimes those co-pays can be pretty steep. Tell us about that, and what your organization does in those circumstances.
Dr. Lou: Sadly, a cancer diagnosis is among the leading causes of medical bankruptcy in the United States. That’s a reflection of the substantial cost of being treated for cancer. One of the areas of focus for us is insurance co-pay relief. So, this is the out-of-pocket expense that a patient may have to shoulder for the drugs that they are being prescribed. And in some cases, it can be substantial because patients–depending on their health insurance plan–may have to pay a percentage of what is a very expensive drug. We established this program nearly a decade ago, and we can– for patients who meet a particular means test– offset the cost of insurance co-pays, drug co-pays, Medicare Part B, Medicare Part D, some other health insurance costs. Last year, I’m very proud to say, we dispensed nearly $45 million to needy patients…
Denver: That is fantastic!
Dr. Lou: …across the country, so that they could have access to the drugs that they were being prescribed by their physician.
Denver: Talking about these costs, is there anything being done at the legislative level to bring them more in line? I know that you and a cohort went down to Washington a short while ago. Tell us about some of your priorities in that arena.
Dr. Lou: The third piece of our mission–we’ve talked about research…we’ve spoken about services to patients. The third piece of our mission is policy and advocacy. We can help through our co-pay program. We can help patients one at a time. But if we can change legislation, we can impact the situation for all cancer patients. So we’re very active in Washington DC, and in state legislatures as well, lobbying for legislation that is in the best interest of cancer patients.
One example would be “oral parity” legislation. Cancer patients receive their treatment largely in one of two ways: intravenously, or orally with a pill. And the way the insurance industry reimburses those two modalities of cancer treatment is different. So, if you received IV treatment, it’s typically in a hospital setting or in the doctor’s office. It’s covered by the medical benefit of your health insurance, probably with a small co-pay. If you’re receiving oral chemotherapy, this is covered by the prescription drug benefit of your health insurance. Frequently, this comes with a much larger co-pay, that can be a percentage of the cost of the drug. We’ve lobbied successfully over the past five years to get legislation passed in 40 states that brings equality, parity to the way the insurance industry must reimburse patients for these two kinds of modalities. We’re very proud of this and hope to make an impact at the federal level as well.
Denver: That’s next! Well, all three of these initiatives wouldn’t occur if they weren’t fueled by money. And your organization raises a significant amount of money– over $300 million annually. I was taken at how distinctive it was that a good portion of the $300 million–over 50%–comes from the grassroots, particularly through many of your signature fundraising events. Tell us about a few of those events– the old reliables, and some of the newer ones you have coming online.
Dr. Lou: Denver, we did raise $300 million last year. This is all private donations; we accept no money from the federal government.
Denver: Why is that?
Dr. Lou: Well, we have a particular agenda, and our agenda is driven by blood cancer patients and their needs. So we don’t want to be dictated to by anyone other than our constituency, our blood cancer patients, first and foremost. Of the $300 million last year–the average donation was $75.
Denver: Wow! Sounds like Bernie Sanders almost…
Dr. Lou: Well, it is a bit like that model. I had someone ask me: Who is our major donor? When I reflect on it, our major donor is Mr. and Mrs. America…
And this happens through the signature fundraising campaigns that we have. Over 25 years ago, the LLS invented “Run A Marathon For Your Charity.” This is a program called Team In Training. We train individuals to participate in an endurance sports event–a marathon, a triathlon, a hundred-mile cycle ride. In the process of training and then completing the event, participants reach out to their friends and family and raise money for The Leukemia and Lymphoma Society. That program has helped fuel the $1 billion dollars that we dedicated to research over the last year.
Denver: I think we’re all familiar with those purple colors.
Dr. Lou: Absolutely! “Light The Night” is another signature event for us. This is a family-focused gentle walk in the evening, celebrating survivors of cancer and their caretakers. There’s also an opportunity to reflect on those we’ve lost to cancer. This “Light The Night” Walk frankly makes me proud to be a fundraiser.
Dr. Lou: There’s something in it for everyone. There’s something in it for patients. There’s something in it for caregivers. There’s something in it for our donors and our sponsors as well.
Denver: I’ll also note there’s going to be several of them in the Metropolitan area in October.
Dr. Lou: Yes, that’s exactly right! This is the timeframe over which we did the “Light The Night” Walks, and I encourage people that would like to support the efforts of The Leukemia and Lymphoma Society to participate in one of these walks. I think they’ll find it inspiring.
Denver: Yeah, it’s a great community.
Dr. Lou: Yeah, thank you for that.
Denver: By most accounts,The Leukemia and Lymphoma Society is a great place to work. And I know this has been very intentional on your part, Lou. These corporate cultures don’t just happen; you have to create them. And you’ve created one where people actually want to come to work, and also one which is going to attract some of the very best talent out there. That is so important. Share with us your philosophy and thinking around this.
Dr. Lou: This is a very important arena for me. I mentioned our patients as constituents. We have two other important constituents–the second one is our donors. And the third is the employees that work at The Leukemia and Lymphoma Society. We have thousands of volunteers–tens of thousands of volunteers–people who participate in our walks, who partner with us to make all of this happen. Our success is based around relationship building. I want to be certain that as an organization, we are as effective and efficient as we can be for patients… driving new therapies.
Blood cancer patients need new therapies today! They don’t want to wait. We need to be as effective and efficient as we can with the dollars that donors give to us.
Denver: And entrust to you…
Dr. Lou: Absolutely! And steward them appropriately. All of this is built on the staff that we have. We have 900 staff around the country, and these are dedicated folks who are, in my view, owed an environment in which they can be productive, be efficient, and effective.
Denver: And feel empowered.
Dr. Lou: I’ve been the CEO now… I’ve been with LLS for 11 years. I came up through running the mission programs–research first– and then all of mission. I’ve been CEO now for just under two years. What I’ve established is an environment around a set of values, among which are: collaboration, openness, accountability, and transparency. And I’ve asked the team to live by these values, because it’s in the best interest of blood cancer patients, and it’s in the best interest of our ability to steward donor dollars.
Denver: Tell us what people find if they visit your website. What is there, both for patients, and for people who might want to get involved or make a financial contribution?
Dr. Lou: Our website is lls.org. Again, first and foremost, it’s a portal for patients. We actually have embedded in the website a patient community, where patients can connect with one another and connect with LLS. And through that patient community, we share, in real time, the most relevant and pertinent information for patients and caregivers about the disease that they are grappling with. Of course, you can also find the information about our fund raising campaigns, Team In Training, Light the Night…a novel, innovative program called “Man and Woman Of The Year.”
If individuals are interested in supporting the efforts of The Leukemia and Lymphoma Society to fight cancer, I’d encourage them to go there and learn more.
Denver: That’s right! Maybe even give a little more than that $75.
Dr. Lou: That would be wonderful!
Denver: Dr. Louis DeGennaro, President and CEO of The Leukemia and Lymphoma Society, you covered an awful lot of ground in a relatively short period of time. I want to thank you so much for being here this evening. It was a real pleasure having you on the program.
Dr. Lou: You’re very welcome!
The Business of Giving can be heard every Sunday evening between 6 and 7 PM Eastern on AM 970 The Answer in New York and on I Heart Radio. You can follow us at bizofgive on twitter and at facebook.com/businessofgiving.