How America's Second Largest Cancer Charity Changes (and Saves) Lives

·9 min read

Words by Mary Mazzoni

Northampton, MA --News Direct-- TriplePundit

Each June as part of the Subaru Loves to Care initiative, employees from Subaru retailers across the country and local LLS staff come together to visit cancer patients, offering words of encouragement and handing out blankets.
Each June as part of the Subaru Loves to Care initiative, employees from Subaru retailers across the country and local LLS staff come together to visit cancer patients, offering words of encouragement and handing out blankets.

“Cancer is a frightening diagnosis,” said Louis J. DeGennaro, Ph.D., who worked for decades in cancer drug discovery and now serves as president and CEO of the Leukemia & Lymphoma Society (LLS). “It can rob an individual of their identity. It can rob them of their livelihood, their freedom, their family and their life. Our goal is to be there for patients all along the way, so they know that they're not alone and that they can access through us the very best treatment possible.”

LLS has invested more than $1.5 billion since 1949 to fund research into treatments for cancers of the blood and bone marrow, a broad categorization that includes 140 distinct diagnoses. It also provides support services to cancer patients and their families across 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 refer to as “Dr. Lou,” to find out more about how the second largest cancer-focused nonprofit in the U.S. works to meet patient needs — and learn what brands can do to help.

Funding cutting-edge research on the road to a cure

The U.S. Food and Drug Administration (FDA) approved a stunning 25 new treatments for blood cancers in 2021 alone. The FDA has approved almost 100 new blood cancer treatments since 2017, more than 70 of which came out of research funded by LLS, an indication of the nonprofit’s knack for identifying innovation as well as the rapid pace of development in cancer research over recent years.

“This is a remarkable outcome in the last five years alone,” DeGennaro told us. “It's the long-term significant funding in this space, including what LLS has been able to put into the system, that is now paying out for patients.”

Each of these new treatments will save countless lives — and every breakthrough potentially opens the door to the next generation of therapies.

Take for example CAR T-cell immunotherapy, a revolutionary form of treatment 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 the soldiers of the immune system — to find, attack and eliminate cancer. It doesn’t work for every patient, but when it does, the results are nothing short of miraculous.

“I have witnessed this — patients have gone literally from their deathbeds to, in days or weeks, being cancer free,” DeGennaro said. The first group of patients who received the treatment in clinical trials recently celebrated a decade without cancer. “For this group, it has kept them cancer free for 10 years,” he continued. “Some people would call that a cure.”

This type of targeted therapy was ushered in by another major innovation from more than a decade earlier: Imatinib, brand name Gleevec, which was approved in 2001 for the treatment of chronic myeloid leukemia — turning a once fatal diagnosis into a manageable condition for most patients.

Rather than a prognosis of three years to live, patients with chronic myeloid leukemia can now treat their cancer at home with two pills a day — allowing them to live healthy and productive lives without ever receiving chemotherapy or radiation treatment in a hospital.

One of those patients is Mel Mann, who beat chronic myeloid leukemia in the late 1990s after receiving Gleevec as part of a clinical trial. Mann recently appeared on an LLS podcast alongside Dr. Brian Druker, a physician researcher at Oregon Health Sciences University whose work in the development of Gleevec saved his life. “I’m glad that Mr. Druker spent so much time in the lab, because if he hadn’t been burning that midnight oil and really studying this issue, I wouldn’t be here. It’s just plain and simple,” Mann said on the Bloodline With LLS podcast in September. “I was able to see my daughter grow up and become a physician herself. I mean, it’s like a miracle.”

The treatment has saved an estimated 350,000 lives globally since its approval.

Supporting cancer patients and their families when it’s needed most

While research into future treatments is critically important, two-thirds of the money LLS spends is devoted to providing free services for patients who are fighting cancer today — and those services are extensive.

The organization’s Information Resource Center, staffed by oncology nurses and social workers, is available to answer patients’ questions in more than 150 languages and help guide them to the right treatment and the right physicians. For cancers that are more difficult to treat with approved therapies, oncology professionals in the LLS Clinical Trial Support Center help patients secure a spot in trials that their physicians think could work for them.

Through the financial assistance division, which distributed $240 million in 2021 alone, patients can get help with paying for their prescriptions, traveling to their treatments or even paying their household bills. LLS also recently launched its first series of scholarships awarded to blood cancer survivors so they can finish their education that may have been disrupted by their cancer treatment.

“I love and cherish LLS for the connections I made through their community,” said Kyle, an LLS scholarship winner from Georgia. “I met and connected with so many wonderful people who I still talk to today, even though I’m in remission.”

Part of the organization’s patient support work also centers on expanding access to life-saving treatments in underserved communities. “Your outcome as a cancer patient should not be dependent on your ZIP code or the number of zeros on your paycheck,” DeGennaro said emphatically. “We have to provide equity in access to every patient.”

For example, the Influential Medicine Providing Access to Clinical Trials (IMPACT) program spearheaded by LLS looks to ”partner with major medical centers and bring clinical trials into the community-based 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 at community-based hospitals and clinics.. The program kicked off at the Mayo Clinic Cancer Center in Minnesota, Vanderbilt University Medical Center in Tennessee and Weill Cornell Medicine in New York City. This funding will allow for the creation of clinical trial sites at community-based treatment centers across the upper Midwest and rural South, as well as in underserved urban communities in and around New York.

LLS also delivers education programs tailored for underserved communities — for example, Myeloma Link, a 5-year-old outreach initiative, seeks to raise awareness about the signs and symptoms of myeloma in underserved Black communities and increase access to optimal care and resources among Black myeloma patients and their families. Black Americans have at least double the risk of myeloma as any other race or ethnicity, and they often face additional barriers and lower access to care.

Policy advocacy

State and federal policy is another key lever to enable equal access to treatment for every patient. On Capitol Hill and in state houses across the country, LLS looks to be the “voice of cancer patients” and “help lawmakers understand where they can make a difference in the lives and the outcomes of their constituents,” DeGennaro said.

Among other efforts, the organization’s Cost of Cancer Care initiative aims to develop what it calls “aggressive but feasible cost-cutting ideas” that would bring down costs for patients without sacrificing quality of care. And when bills related to cancer care — such as those impacting medical insurance or drug prices — come up for debate, more than 30,000 LLS-affiliated advocates volunteer to contact their representatives with more information about how the proposed legislation impacts patients.

How brands can help

I was 7 years old when my father was diagnosed with Hodgkin's lymphoma, and I later learned through stories how bad it really got — how close we came to losing my dad, and how my mom managed to provide for the family while navigating the tangled labyrinth of insurance companies, billing departments, and healthcare providers that made up his treatment. My parents sure could have used the services that LLS provides, and they’re not alone. “I hear this far too often,” DeGennaro said, “and brands can certainly help us in raising awareness in the patient population. If patients don't know about us, we can't help them.”

Further, LLS looks to leverage the unique strengths of its corporate partners to better serve patients. For example, since “the pharmacist is becoming the frontline of blood cancer care,” LLS works with Walgreens to create training programs for pharmacists so they understand patient needs — and the latest treatments — better, DeGennaro said.

LLS has also worked with Subaru of America since 2016 through a partnership that makes use of the automaker’s penchant for community-based philanthropy as well as its network of auto retailers from coast to coast. Subaru is the largest automotive donor to LLS. Each June as part of the Subaru Loves to Care initiative, employees 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 about a blanket,” DeGennaro told us. “In the moment that 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, along with more than 31,000 arts and crafts kits for young patients, and thousands of messages of hope, since 2016.

“We're always leading with what we can do for patients,” DeGennaro said. “We're trying to cure these diseases — and in the meantime, while we're at that, making sure patients have the best outcomes and the best quality of life.”

This article series is sponsored by Subaru and produced by the TriplePundit editorial team.

Images courtesy of Subaru and LLS

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