“Cancer is a scary diagnosis,” said Dr. Louis DeGennaro, who worked in cancer drug discovery for decades and is now CEO of the Leukemia & Lymphoma Society (LLS). “It can deprive an individual of their identity. It can rob them of their livelihood, their freedom, their families and their lives. Our goal is to be there for patients every step of the way, so they know they are not alone and can access the best possible treatment through us.
The LLS has invested more than $1.5 billion since 1949 to fund research into treatments for blood and bone marrow cancers, a broad categorization that includes 140 distinct diagnoses. It also provides support services to cancer patients and their families in all 50 states and serves as the “voice of cancer patients” in Washington and state legislatures through policy advocacy. TriplePundit sat down with DeGennaro, who most affectionately refers to “Dr. Lou,” to learn more about how the second-largest cancer-focused nonprofit in the United States is working to address the patient needs – and find out what brands can do to help.
Fund cutting-edge research on the road to recovery
The United States Food and Drug Administration (FDA) has approved 25 amazing new treatments for blood cancers in 2021 alone. The FDA has approved nearly 100 new blood cancer treatments since 2017, including more than 70 stem from LLS-funded research, an indication of the non-profit organization’s talent for identifying innovation as well as the rapid pace of cancer research development in recent years.
“This is a remarkable result in the last five years alone,” DeGennaro told us. “It’s the significant long-term funding in this space, including what LLS has been able to put into the system, that is now paying for patients.”
Each of these new treatments will save countless lives – and each breakthrough potentially opens the door to the next generation of therapies.
Take for example CAR T-cell immunotherapy, a revolutionary form of treatment that DeGennaro describes as akin to “Star Wars medicine”. Approved in 2017 to treat leukemia and lymphoma, CAR T-cell immunotherapy reprograms a patient’s T cells – a type of white blood cells known as soldiers of the immune system – to find, attack and eliminate cancer . It doesn’t work for all patients, but when it does, the results are nothing short of miraculous.
“I’ve witnessed this – patients have literally gone from their deathbed to, within days or weeks, being cancer free,” DeGennaro said. The first group of patients to receive the treatment in clinical trials recently celebrated a decade without cancer. “For this group, it kept them cancer-free for 10 years,” he continued. “Some people would call it a cure.”
This type of targeted therapy was ushered in by another major innovation over a decade old: Imatinib, brand name Gleevec, which was approved in 2001 for the treatment of chronic myeloid leukemia – transforming a once fatal diagnosis into a manageable condition for most patients. .
Rather than a prognosis of three years to live, chronic myeloid leukemia patients can now treat their cancer at home with two pills a day, allowing them to lead healthy and productive lives without ever receiving chemotherapy or radiation therapy. In a hospital.
One such patient is Mel Mann, who overcame chronic myeloid leukemia in the late 1990s after receiving Gleevec in a clinical trial. Mann recently appeared on an LLS podcast alongside Dr. Brian Druker, a research physician at Oregon University of Health Sciences, whose work developing Gleevec saved his life. “I’m glad Dr. Druker spent so much time in the lab, because if he hadn’t burned that midnight oil and really studied this problem, I wouldn’t be here. It’s plain and simple.” Mann said on the Lineage with LLS podcast in September. “I was able to see my daughter grow up and become a doctor herself. I mean, it’s like a miracle.
The treatment has saved around 350,000 lives worldwide since its approval.
Supporting cancer patients and their families when they need it most
While research into future treatments is critically important, two-thirds of the money LLS spends goes towards providing free services to patients battling cancer today – and those services are expanding.
The organization Information Resource Center, staffed by oncology nurses and social workers, is available to answer patient questions in more than 150 languages and guide them to the right treatment and the right doctors. For cancers that are more difficult to treat with approved therapies, oncology professionals at LLS Clinical Trial Support Center help patients get a place in trials that their doctors think might be right for them.
Through the Financial Aid Division, which handed out $240 million in 2021 alone, patients can get help paying for prescriptions, getting to treatments, or even paying household bills. LLS also recently launched its first round of scholarships given to survivors of blood cancer so that they can complete their studies which may have been disrupted by their cancer treatment.
“I love and cherish LLS for the connections I have made with their community,” said Kyle, an LLS scholarship recipient from Georgia. “I met and connected with so many wonderful people who I still talk to today, even though I am in remission.”
Part of the organization’s patient support work also focuses on expanding access to lifesaving treatments in underserved communities. “Your outcome as a cancer patient shouldn’t depend on your zip code or the number of zeros on your paycheck,” DeGennaro insisted. “We need to ensure equity of access for every patient.”
For example, the Influential Medicine Program with Access to Clinical Trials (IMPACT) led by LLS seeks to “partner with major medical centers and bring clinical trials to community cancer treatment centers where, frankly, most patients are actually treated,” DeGennaro explained.
IMPACT provides funding to major medical centers to create a network of clinical trial sites in hospitals and community clinics. The program began at Mayo Clinic Cancer Center in Minnesota, Vanderbilt University Medical Center in Tennessee, and Weill Cornell Medicine in New York. Town. This funding will enable the establishment of clinical trial sites in community treatment centers in the Upper Midwest and Rural South, as well as underserved urban communities in and around New York City.
LLS also offers education programs tailored to underserved communities – for example, Myeloma Link, a 5-year-old awareness initiative, aims to raise awareness of myeloma signs and symptoms in underserved black communities and increase access to optimal care and resources among black myeloma patients and their families. Black Americans have at least twice the risk of myeloma than any other race or ethnicity, and they often face additional barriers and reduced access to care.
State and federal policy is another key lever to enable equal access to treatment for every patient. On Capitol Hill and in statehouses across the country, LLS appears to be the “voice of cancer patients” and “helping legislators understand where they can make a difference in the lives and outcomes of their constituents.” , DeGennaro said.
Among other efforts, the organization’s Cost of Cancer Care initiative aims to expand what it calls “aggressive but achievable cost cutting ideasthat would reduce costs for patients without sacrificing quality of care. And when bills related to cancer care – such as those that impact medical insurance or drug prices – are debated, more than 30,000 advocates affiliated with the LLS volunteer to contact their representatives. with more information on the impact of the proposed legislation on patients.
How brands can help
I was 7 when my dad was diagnosed with Hodgkin’s Lymphoma, and later learned through stories about how bad things had gotten – how close we were to losing my dad and how my mother managed to support the family while navigating the tangled maze of insurance companies, billing services, and healthcare providers that constituted her treatment. My parents could certainly have used the services provided by LLS, and they are not the only ones. “I hear that far too often,” DeGennaro said, “and brands can definitely help us raise awareness in the patient population. If patients don’t know us, we can’t help them.
Additionally, LLS seeks to leverage the unique strengths of its business partners to better serve patients. For example, since “the pharmacist becomes the first line of blood cancer care”, LLS works with Walgreens to create training programs for pharmacists so they better understand patient needs — and the latest treatments — DeGennaro said.
LLS has also worked with Subaru of America since 2016 in a partnership that utilizes the automaker’s penchant for community philanthropy as well as its coast-to-coast network of automotive retailers. Subaru is the largest automotive donor to LLS. Each month of June as part of the Subaru Loves to Careemployees from Subaru retailers across the country and local LLS staff come together to visit cancer patients, offering words of encouragement and handing out blankets.
Chemotherapy treatment rooms are notoriously cold, but “it’s not just a blanket,” DeGennaro tells us. “Right now this blanket means a lot, but it’s the support, the personal connection that defines this partnership.” Subaru and LLS have distributed more than 230,000 blankets, as well as more than 31,000 arts and crafts kits for young patients, and thousands of messages of hope, since 2016.
“We always lead with what we can do for patients,” DeGennaro said. “We’re trying to cure these diseases – and in the meantime, while we’re at it, we’re making sure patients have the best outcomes and the best quality of life.”
This series of articles is sponsored by Subaru and produced by the TriplePundit editorial team.
Images courtesy of Subaru and LLS