Expanding Access to Leukemia & Lymphoma Care
This year, Real World Health Care is highlighting non-profit organizations recognized by the Biden administration’s Cancer Moonshot program. In this edition, we feature the Leukemia & Lymphoma Society (LLS), the largest non-profit dedicated to creating a world without blood cancers. Since 1949, LLS has invested more than $1.7 billion in groundbreaking research, pioneering many of today’s most innovative treatment approaches for leukemia, lymphoma, Hodgkin’s disease, and myeloma.
LLS was recognized by the White House Cancer Moonshot for its $17+ million investment and efforts to promote health equity by bringing clinical trials and treatment innovation to diverse and underrepresented communities.
Gwen Nichols
“The Cancer Moonshot and LLS have a joint mission to accelerate science and collaborate in the collection and sharing of data to help ensure that health policies are purposeful and effective,” says Gwen Nichols, MD, Executive Vice President & Chief Medical Officer, LLS. “LLS brings a unique perspective to this goal due to our experience in research, clinical trials, patient assistance, patient and professional education, and public policy advocacy.”
IMPACT Program to Bring Clinical Trials to More Patients
One of the LLS programs highlighted by the Cancer Moonshot program is its Influential Medicine Providing Access to Clinical Trials (IMPACT) Research Grant program. The goal of the program is to expand clinical trial access by opening trials to patients being cared for in community oncology centers. Traditionally, clinical trials are held predominantly at large, academic medical centers, often in major metropolitan areas.
“In the cancer world, access to clinical trials can sometimes mean the difference between life and death,” says Dr. Nichols. “Unfortunately, for many cancer patients, such access is extremely limited or completely unavailable.”
Dr. Nichols points to several factors that affect clinical trial access, some of which are cost-related, like the ability to afford adequate health insurance. Living in a rural area can also impede access to clinical trials. Costs related to gas, vehicle wear-and-tear, lodging, and parking can add up, and the time commitment for regular and frequent visits to trial locations in major cities can be difficult for working patients and their caregivers.
“Even if you consider someone living in an outer borough of New York City, getting into midtown Manhattan for regular appointments can mean a couple hours of bus, subway, and taxi time,” she says. “Only the most motivated, and often well-to-do, patients can commit to the time and expense required.”
People of color and those for whom English is a second language also face barriers to clinical trial access, Dr. Nichols says, noting that the nation’s history of race-based health inequities has led to a high level of mistrust in the medical field among underserved communities. She says the LLS is working to engage these communities to help them understand that clinical trials may be the best way for them to get access to therapies they may otherwise not be able to get or afford.
The IMPACT program funds health care infrastructure that uses a hub-and-spoke approach in which major cancer centers lead the trials and local cancer centers recruit patients and deliver trial-related care, including routine labs, bloodwork, and physical exams. Dr. Nichols says the IMPACT model is most appropriate for later-phase trials in which treatment efficacy is being tested instead of earlier-phase trials testing treatment safety.
Recipients of LLS’s IMPACT grant recipients include:
- City of Hope, Duarte, California, and local oncology centers covering 9,365 square miles in southern California serving a multi-racial, multi-ethnic community of 17 million people.
- Weill Cornell Medical Center, New York City, and local clinics throughout Queens and Brooklyn, where community physicians and oncologists will receive education and training designed to increase patient enrollment in trials.
- MD Anderson Cancer Center and local oncology centers in south Texas serving communities with high numbers of Hispanic and Black patients.
- Emory University, Atlanta, and community sites serving inner-city Atlanta and rural Georgia.
- Mayo Clinic, Rochester, Minnesota, and 35 local oncology centers serving patients throughout rural, underserved communities in Minnesota, Wisconsin, and Iowa, as well as metropolitan Minneapolis.
- University of Colorado, Denver, and local oncology centers throughout Colorado and the Rocky Mountain Region, including those serving Native American patients.
- Vanderbilt University Medical Center, Nashville, and nine local oncology centers in the Delta Regional Authority, home to some of the highest cancer rates in the U.S.
“With the right infrastructure in place, this hub-and-spoke model will allow patients to receive care from a known and trusted local provider and help that local provider maintain their connection with their patient instead of referring them elsewhere,” Dr. Nichols says.
Equity in Access Research Program Seeks to Reduce Barriers to Care
The White House Cancer Moonshot also recognized LLS’s Equity in Access Research Program, which aims to generate new evidence that can guide policy reform and changes in health care practice, to help reduce barriers to care by mitigating the impact of social, economic, and environmental disadvantages.
The program invites applications from researchers in two areas:
- Building evidence for effective strategies to increase therapeutic cancer clinical trial accrual, focusing on promoting access for patients in underrepresented groups.
- Understanding how health insurance affects equity in access to care for patients with and survivors of blood cancer.
“While there has been a wealth of research programs studying the problem of access, very few have studied potential policy solutions,” Dr. Nichols says. “We want to fund research that digs deeper into nuances within populations and develops plans for implementing solutions that have a demonstrable effect on health outcomes.”
As an example of the type of research funded by the program, Dr. Nichols points to a 2023 program grant that funds a team of investigators studying how increased cost-sharing for cancer care affects patient outcomes and financial security, which pose high financial risk to working-aged adults undergoing treatment for blood cancer. The goal of the research is to inform the development of policy-relevant solutions related to benefit design in individuals with blood cancer, including state and federal policies governing insurance regulations.
Another previous grantee studied Medicare plan selection – a complex process with many different options – comparing beneficiaries with and without a history of cancer. The research found that individuals with a history of cancer select plans with greater financial protections and broader health care provider networks than those without a history of cancer. The researchers concluded that it is imperative to improve educational resources that help beneficiaries understand their coverage options and select a plan that best meets their current and future health care needs.
Support for Clinical Trial Participants
Beyond funding research and initiatives to expand access to clinical trials, LLS offers a Clinical Trial Support Center with free resources and support to help patients decide whether the choice to join a clinical trial is right for them. For example, LLS Clinical Trial Nurse Navigators can help patients by conducting comprehensive clinical trial searches and personally assisting them and their caregivers throughout the entire clinical trial process. LLS Information Specialists offer guidance through cancer treatment and related financial and social challenges, as well as provide accurate, up-to-date disease, treatment, and support information. LLS Registered Dietitians provide patients and their caregivers with free nutrition consultations by phone or email.
“These unique services are designed to help remove the hurdles that get in the way, even for patients who are highly motivated to participate in a clinical trial,” concludes Dr. Nichols. “They also help patients who may be curious about available clinical trials, even if they don’t take advantage of those opportunities immediately.”
