Dr. Louis J. DeGennaro, President and Chief Executive Officer of The Leukemia & Lymphoma Society, shares what the “dizzying pace” of progress in 2018 means for patients.
I believe that cancer can be cured, and I believe that we can achieve this in our lifetime. I can make that statement confidently because as the president and CEO of The Leukemia & Lymphoma Society (LLS), I see the extraordinary impact we are making in fighting blood cancers and, importantly, how this work is helping patients with other cancers and diseases.
Since we started in 1949, LLS has invested more than $1.2 billion in cutting-edge cancer research, leading to breakthroughs in immunotherapy, genomics and personalized medicine that are improving and saving the lives of patients. While much more work remains ahead of us, it’s an incredibly exciting time for cancer research and we have a real reason to be optimistic.
Ushering in The Next Generation of Cancer Treatment
Consider the promise of CAR (chimeric antigen receptor) T-cell immunotherapy, which is giving hope to patients who have no other treatment options. In 2017, we witnessed a historic victory for cancer patients when two revolutionary CAR T-cell immunotherapies were approved by the U.S. Food and Drug Administration (FDA). I take great pride in our role as an early champion of this game changing approach, with our investment of more than $40 million in research at multiple institutions over the past two decades.
Named the 2018 Advance of the Year by the American Society of Clinical Oncology (ASCO), CAR T-cell immunotherapy, which genetically reprograms a patient’s own immune cells to attack cancer, is now being tested in more than 500 clinical trials for other cancers – including cancers of the lung, breast, colon and prostate.
Achieving Progress at a Dizzying Pace
Even more encouraging: the dizzying rate of progress has continued. Since the start of 2017 to date, the FDA has approved an astounding 37 blood cancer treatments, and LLS helped advance 31 of these somewhere along their development journey.
Among these advancements are new therapies for devastating ultra-rare diseases like hairy cell leukemia, Sézary syndrome and mycosis fungoides; treatment options for acute myeloid leukemia (AML), one of the most deadly blood cancers; and progress for myeloma, including a new immunotherapy combination. I predict that even more approvals for the blood cancers are on the way before the end of the year.
Helping Patients, Caregivers and Families When They Need it Most
In this new era of cancer care, treatment options are evolving at a faster pace than ever. While our sustained research investment is bringing us closer to cancer cures, patients and their caregivers and families need help before, during and after their diagnosis and treatment. With our robust education and support services, LLS is the leading nonprofit doing just that.
We focus on helping patients navigate their treatments and access quality, coordinated care. This year alone, our Information Specialists responded to nearly 20,000 inquiries, connecting with patients and caregivers one-on-one and guiding them to our wide array of education and support services – including personalized clinical trial navigation, family support groups, nutrition consultations and financial assistance, to name a few.
Raising Our Voices for Patients
At the same time, our Office of Public Policy is hard at work advocating on behalf of cancer patients, and pushing for policies at the state and federal level to accelerate new treatments and ensure patients have access to quality, affordable care.
With more than 100,000 volunteer advocates across the country, we are making our voices heard on behalf of the 1.3 million blood cancer patients and survivors whom we serve. In fact, LLS advocates helped make The Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act a reality – the most comprehensive federal childhood cancer legislation ever introduced. Signed into law in June, this legislation expands opportunities for childhood cancer research and survivorship programs and will make an important impact on the lives of childhood cancer patients, survivors and their families.
Looking Forward to More Groundbreaking Advancements
Looking ahead, we will continue to fund the most innovative cancer research to achieve breakthroughs faster for patients who urgently need them. I’m pleased to say that our current research commitment has reached more than $188 million in multi-year grants. We are supporting more than 240 of the most visionary scientists worldwide, whose projects include producing next-generation immunotherapies, addressing the unmet needs of children with acute leukemia and finding cures for lethal diseases such as AML, myeloma and lymphoma.
With this impactful investment and our unparalleled dedication to providing lifesaving support and advocacy for patients, I believe that a world without blood cancers is within our reach.
Here at LLS, we say “Beating Cancer is in Our Blood,” and this rallying cry inspires us all to work tirelessly toward our mission each and every day. As the world’s largest nonprofit dedicated to fighting blood cancers, we press on with unwavering commitment and urgency. This giving season, we’re counting on you to join us.
On November 6, citizens in Idaho, Nebraska, and Utah approved ballot measures to expand Medicaid in their states. These landmark votes will close the coverage gap for more than 360,000 people in these states who earn too much to qualify for traditional Medicaid but not enough to get help with the cost of buying individual coverage.
Employees, advocates, and volunteers with The Leukemia & Lymphoma Society (LLS) supported these measures every step of the way. The LLS Principles for Meaningful Coverage call on us to improve access to healthcare for our patients, and we’re proud to have endorsed and advocated for these measures.
Stacie Kulp, LLS Utah Chapter Executive Director
A victory this big would not have been possible without the shared effort of hundreds of advocates from across the patient community. Together, advocates across Idaho, Nebraska, and Utah worked for months to gather signatures, make phone calls, knock on doors, and talk to their networks about the importance of Medicaid expansion. Thanks to their collective gifts of time, expertise, and resources, Medicaid expansion is now the law in their states.
Among those advocates were members of the LLS Chapters in Idaho, Nebraska, and Utah. Area Director Lauren Olsen (Idaho), Executive Director Jenna Sager (Nebraska) and Executive Director Stacie Kulp (Utah) spoke at press conferences, authored letters to local newspapers, and educated their Boards of Trustees and high-level volunteers about the importance of the issue. Their work was integral to the success of these ballot measures.
As more states adopt Medicaid expansion, LLS will continue to make good on its belief that people shouldn’t have to fear going bankrupt when seeking treatment for a serious medical issue. In the 14 states left that haven’t expanded Medicaid, more than two million people continue to face a serious coverage gap. For that reason, LLS will keep working to ensure blood cancer patients can access the care they need.
Learn how you can raise your voice in the fight against cancer.
The Leukemia & Lymphoma Society (LLS) has helped millions impacted by cancer throughout their almost 70-year history. But the fight against blood cancers cannot be won without support.
LLS’s Light The Night fundraising campaign continues to help light the path to cancer cures and give hope to cancer patients nationwide. Through Light The Night, thousands of national partners, sponsors and corporate teams, including Burlington Stores, Pharmacyclics, Janssen, Walgreens and Wawa, are helping LLS fund lifesaving research and support for patients battling cancer. It is because of the lifesaving advances in treatments that more patients are surviving cancer.
Life after cancer was once unimaginable. No one forgets that he, she or a loved one once had cancer. Many survivors progress to a "new normal." Adjusting emotionally is a process that takes time. But survivors might also find that, in some ways, the new normal is as rewarding and gratifying than life before cancer.
As LLS’s National Presenting Sponsor of Survivorship and Hope, Pharmacyclics and Janssen are committed to working with LLS through its Light The Night fundraising campaign to shine a spotlight on what it means to be a cancer survivor.
“We are honored to sponsor The Leukemia & Lymphoma Society’s Light The Night Walks in support of their efforts to help patients and caregivers through their blood cancer journey from diagnosis to treatment, and ultimately to their new normal,” said Dr. Roula Qaqish, Head of Medical Affairs, Pharmacyclics LLS, an AbbVie company. “Through The Leukemia & Lymphoma Society and this incredible nationwide movement, we look forward to helping further educate the public and empower patients in blood cancer community.”
Dr. Andree Amelsberg, Vice President of Medical Affairs at Janssen Oncology, added, “The Light The Night campaign is the perfect platform for partners and sponsors like us, as it allows us to bring our messages of support directly to blood cancer communities across the country. LLS holds 140 Light The Night Walks each fall, providing a meaningful opportunity to reach many of the 1.3 million Americans living with or in remission from a blood cancer as well as their loved ones.”
LLS thanks all its 2018 National Corporate Partners to bring us one step closer to finding cures, including #1 Corporate Partner and Honored Friend: Burlington Stores. National Presenting Sponsor of Survivorship and Hope: Pharmacyclics and Janssen. Leading Lights: Walgreens; and The Wawa Foundation. Luminaries: Amgen; Astra Zeneca; Barclays; Carter’s; Celgene Corporation; Elbit Systems of America; FIS; Genentech/Biogen; Kite, a Gilead Company; Great American Cookies®, Marble Slab Creamery®, MaggieMoo's Ice Cream & Treatery®, Pretzelmaker®, Hot Dog on a Stick®, and Round Table Pizza®; Pfizer Oncology; Stater Bros. Charities; Takeda Oncology; and The United Food and Commercial Workers (UFCW), LLS’s longest standing partner.
LLS and the 2018 Light The Night National Corporate Partners share the goal to support patients and caregivers through their cancer diagnosis and treatment – through ground-breaking research efforts, continuous advancements in treatment and educational resources to inform and empower.
Learn more about The Leukemia & Lymphoma Society and Light The Night, volunteer, participate or donate. Visit www.LightTheNight.org for more information.
