Four Questions with Louis J. DeGennaro: How LLS Keeps Lights Shining for People Living with Blood Cancer

Louis J. DeGennaro, President and CEO of the Leukemia & Lymphoma Society (LLS), recognizes that amid a global pandemic, people living with blood cancers – who are at higher risk of getting sicker if infected with the virus and may be facing cancer alone – need support now more than ever.

“We’ve quickly pivoted to provide more robust information – from wherever people feel safe and comfortable,” says DeGennaro. “We envision telehealth is here to stay.”

We spoke with DeGennaro to discuss how the organization is helping to keep people living with blood cancers connected to the organization’s support and services.

Q: Can you tell us about the mission of LLS and what inspired you to join the organization?
LLS was founded more than 70 years ago by parents who lost their son to leukemia. Over the years the organization has expanded its focus from leukemia to all of the different types of blood cancers. We are now the world's largest nonprofit health organization dedicated to supporting blood cancer research, and providing education and patient services. Some examples of the vital programs we offer include the Patti Robinson Kaufmann First Connection, which pairs people living with blood cancer with a peer volunteer who has gone through a similar experience, and the LLS Clinical Trial Support Center, which matches people with a nurse navigator who can help answer questions about participating in clinical trials.

I’ve devoted my career to trying to help people through drug discovery – first in academic research, later directing drug development in the pharmaceutical industry. I have been with LLS since 2005. I love my work because it is the perfect intersection of science and patient care. When people ask me what I think our mission is, my answer is simple: to cure cancer, and not just blood cancer, but all cancers. I believe the cures we’re working toward in blood cancer can impact the treatment of many other cancers.

Q: How has LLS adapted to the needs of its community over the past several months during the COVID-19 pandemic?
Early on, we noticed that people were reluctant to go to their medical appointments given fears about exposure to COVID-19. By the nature of the disease, people living with blood cancer are inherently at a greater risk of getting very sick if infected. We’ve worked hard to communicate that keeping scheduled appointments for active treatment – whether in-person or using telehealth –is necessary and safe.

We have also quickly recognized the burden of the pandemic on people living with blood cancers and saw an opportunity to better support the financial needs of our community during this difficult time. I’m incredibly proud that we’ve distributed nearly $5 million to approximately 20,000 patients through financial relief funds to date. The funds directly help families manage expenses that come on top of the costs of treating blood cancer, such as bills and groceries.

Q: LLS aims to keep people connected through in-person services. How has the organization managed to continue providing this support during a time when people are being encouraged to stay home?
Our priority remains unchanged – we want to connect and provide support to those with blood cancer. But how we provide this service has evolved to protect the safety of our patients, volunteers and supporters.

We’ve worked to provide our events and resource information on many different platforms. For example, events that used to be held in-person across the United States are now done through webcasts, podcasts and online support groups. While we were initially concerned about how the community would respond to these new formats, we have seen an overwhelmingly positive response, with an increase in participation. We believe that virtual engagements are here to stay. These types of events have certainly changed how we conduct business – they have really become important tools in our efforts to expand our reach to even more patients.

Q: What’s next for LLS and how can partners work with you to achieve your goals?
While this fall certainly looks different than last year, we are still committed to holding our signature Light The Night event – virtually this year – to bring together families and communities to honor blood cancer survivors and those who were lost to the disease. With the kind of work we do, often we don’t see the people we’re helping, even during normal times. Events such as Light The Night help bring the people we serve even further to the forefront of our minds. During these times, we are especially grateful for the partnership of organizations such as Gilead and Kite that are advancing innovative therapies for blood cancers. It has also been wonderful to see how employees at Gilead and Kite mobilized to participate in our virtual Light the Night walks this year.

The goal of the virtual Light The Night is to allow the event to continue, delivering a powerful, meaningful and memorable experience for all participants.

As an advocacy group, we welcome opportunities to partner with a variety of stakeholders, from healthcare providers and medical associations to policymakers and industry, in an effort to increase research and raise awareness of our services.

We’ve made great progress – death rates are down and survival rates are increasing. Our goal is to cure these diseases. I know full well the value of groundbreaking research. I look forward to the day when LLS programs are no longer needed but, in the meantime, people facing blood cancers remain our North Star and our work every day is for them – with or without a pandemic.