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. (more…)