Led by Executive Director Pam Swenk, the Illinois and Northwest Indiana Chapter of the Leukemia and Lymphoma Society (LLS) sets itself apart with the Be Your Own Advocate (BYOA) Program, which provides unique, disease-specific resources to take the guesswork out of treatment schedules, types of treatments, and finding medical professionals for people with blood cancers, especially for fighters in underserved communities.
It wasn’t until after the program’s launch that the true beneficiaries of BYOA revealed themselves. “We found that the highest amount of interest in the BYOA materials was in some of the hospitals and clinics catering to the underserved,” says Swenk. “[Like] Stroger (Hospital, in Chicago), where the largest population they serve are people of color and non-English speaking patients.”
Swenk reveals that these hospitals have less resources and time to devote to patients, but their needs can be highest. “There are cultural issues in underserved populations, such as fears of deportation for the undocumented or historical fears of improper medical treatment in other populations,” begins Swenk. “LLS and blood cancer does not see color or documentation and believes that language or history should not be a barrier in the path to wellness,” she says.
Partnerships with community organizations like Gilda’s Club, Imerman Angels, Wellness House, and others means that LLS is providing resources to all affected by blood cancer, regardless of demographics. “All people have the potential to develop a blood cancer,” says Swenk.
Founded in 1949, LLS has supported research that has contributed to nearly every blood cancer therapy treatment, including immunotherapy, genomics, and precision medicine. In the past year alone, LLS has supported research for 34 of 39 total FDA-approved therapies to help treat blood cancers, according to Swenk. “It is incredibly humbling and yet empowering to understand that this chapter plays a role in these great accomplishments,” she says.
LLS also offers educational programs for patients and professional health care workers, finds clinical trials, assists people with insurance co-pays, and provides access to other types of financial assistance. They are the largest funder of research to advance cures, and have invested more than $1.3 billion since their inception. “As the largest nonprofit dedicated to fighting blood cancers, our goal is to cure cancer, and we believe we can achieve this goal,” says Swenk.