Program areas at The Leukemia & Lymphoma Society
A) research programs: at lls, we are pushing boundaries toward powerful new therapies. We propel groundbreaking cancer treatments through all phases of The drug approval process and are proud that our support has been key to advancing 75% of The almost 100 blood cancer treatment approvals over The last five years. As we continued to support The search for lifesaving and less toxic treatments in 2021, we invested in exciting research frontiers, including precision medicine, immunotherapy, and links between mutations and blood cancer-advancements that are changing The paradigm of cancer treatment. In The process, we propelled several novel science initiatives to new heights-many of which hardly seemed possible just a short time ago. With advisory input from recognized biomedical research experts, lls funds exemplary projects across The entire research continuum relevant to improve outcomes for blood cancer patients, from basic laboratory science through clinical trials, and from investigator-initiated research to private-sector drug development alliances. Lls is deliberate and purposeful in finding and supporting research that is most likely to help patients as soon as possible. To date, lls has invested over 1.5 billion in research aimed at helping all blood cancer patients live better, longer lives. In fiscal year 2021, lls supported research in The u.s., canada and 6 other countries with a total research disbursement of approximately 33.9 million. Research funding was distributed across all blood cancers. Impact research grants to address unequal representation of underserved populations in clinical trials, in may we introduced impact (influential medicine providing access to clinical trials) research grants. An initial five-year investment of 3.75 million was allocated to mayo clinic, vanderbilt university medical center, and weill cornell medicine in new york city. The impact grants will help these major cancer centers expand clinical trial access to local community-based hospitals and clinics with substantial underserved populations. The goal is to increase trial enrollment among traditionally underserved populations, including racial and ethnic minorities, rural residents, and individuals with low income, to at least 20%, thereby expanding access to state-of-the-art therapies to a broader swath of newly diagnosed blood cancer patients. Therapy acceleration program (tap) since 2007, our innovative venture philanthropy initiative, The lls therapy acceleration program (tap), has partnered with biotechnology companies and academic researchers to extend The therapeutic landscape in Leukemia, Lymphoma, and multiple myeloma. In 2021, we made six new investments in companies developing new immunotherapies including "off The shelf" car t-cell therapy, "in vivo" therapy that generates cancer-fighting car cells inside The body, two first-in-class antibodies targeting novel checkpoints, to release The brakes and activate immune cells so they can fight cancer, and car- macrophage (car-m) therapy to treat cancers where checkpoint inhibitors tend to be less effective. National patient registry covid information The ongoing covid-19 pandemic engendered a host of fears and questions for The blood cancer community. When patient concerns arose about whether The new vaccines would protect them, lls stepped in to find answers. In february 2021, lls activated The lls national patient registry, a project supported by ethel and bernard garil in memory of their son, michael, who succumbed to acute lymphoblastic Leukemia. More than 10,000 blood cancer patients answered The call to join The registry as "citizen scientists." This allowed us to generate The largest data set reported to date on vaccine safety and efficacy(including boosters) across all major blood cancer and treatment types. This information has helped patients, healthcare providers, and public health officials make more informed choices about covid-19 prevention. Clinical trials beat aml master trial beginning november 2016, lls launched The beat aml master trial, a collaborative clinical trial testing several novel targeted therapies for patients with acute myeloid Leukemia (aml) designed to facilitate fda approval of new drugs and change The treatment paradigm for patients diagnosed with aml by developing more individualized, effective treatment approaches. The master trial involves collaborations with multiple medical institutions, drug companies, a genomic provider, a clinical research organization, and The fda, all of whom have committed to working collaboratively. In fiscal year 2021, up to 35 patients participated in clinical trials under The beat aml master trial.
C) public health education: lls believes knowledge is power. As always, lls has offered their informational programs in virtual formats, continuing to provide vitally needed education and emotional support for those impacted by blood cancer. Ongoing pandemic concerns trained oncology information specialists in our information resource center (irc) were available to answer pandemic-related and other questions. Over 26,000 interactions between The irc and patients and caregivers took place, with average call lengths up 30% over 2020. Facilitating clinical trial access The lls clinical trial support center (ctsc) grew throughout The year as we increased our bi-lingual and pediatric expertise among The ctsc nurse navigators, and continued to expand The possibility of positive outcomes for patients by matching them to suitable clinical trials. Our nurse navigators assisted 1,019 patients (up 31% from 2020). Of The 759 new patients assisted (up 31% from last year), 21% entered a trial. We were honored that a ctsc team-authored article, overcoming barriers to clinical trial participation: outcomes of a national clinical trial matching and navigation service for patients with a blood cancer, was published in The "journal of clinical oncology, oncology practice" in may. Outreach to underserved groups we augmented efforts to expand access to lls services and resources by bolstering relations with community groups and leaders, notably in The african american and latino communities, and increased our number of bilingual volunteers. We also increased accessibility of our education programs to rural patients and families via our virtual offerings. Moreover, we expanded partnerships with affinity groups including: The coalition of 100 black women, The mexican consulate's ventanilla de salud program,and promotores (vision y compromiso). The lls myeloma link program, launched in 2017, continued to gain traction. We improved understanding of treatment options by providing important information to african americans, who are twice as likely to be diagnosed with multiple myeloma as caucasian americans. In 2021, lls reached approximately 10,448 people through more than 72 myeloma link education and outreach activities in 13 cities. Education and patient connections our virtual education programs provided both patients and families, as well as health care professionals, access to content including blood cancer conferences, local education programs, national webinars, videos, lectures, and podcasts. Lls's highly viewed website continues to provide The most up to date blood cancer information including access to blogs, booklets, workbooks, fact sheets and more. In addition, nearly 1,000 cancer patients were provided with personalized nutrition consultations by lls's registered dietitian. Our patient & community outreach team continued to bring patients together via online local support groups and chats. The patti robinson kaufmann first connection program matched nearly 1,800 patients (up 5% from 2020) with trained volunteers facing The same disease, helping to avert pandemic-related isolation. In addition, membership in lls community-our online social network-increased 23% over 2020.
B) patient & community services: an estimated 1.3 million people across The united states (us) are currently living with or are in remission from Leukemia, Lymphoma and myeloma. The Leukemia & Lymphoma society (lls) offers an array of free, comprehensive resources to blood cancer patients, caregivers, families and friends of patients, advocates, healthcare professionals and The public. Lls is committed to providing The most accurate and up-to-date blood cancer information. Professional volunteer clinical advisors work with lls staff to review all of The information lls provides through healthcare professional and patient education programs, publications and The lls website. Support services are provided by professionals or rigorously trained peer volunteers. All resources are provided through a variety of media - print, online, by phone, and face-to-face in communities. A number of resources are available in spanish for patients, caregivers and healthcare professionals. Financial assistance our financial assistance programs aim to lessen The economic toll on patients and families to help patients afford life-saving treatments. To counter continually rising drug prices and The ongoing financial impact of covid-19, we provided more than 45,000 patients with over 241m in total grants, a 70% increase over last year. The lion's share-over 234 million- supported patients' insurance premiums and treatment-related co-pay and co-insurance out of pocket costs through our co-pay assistance program. In keeping with our commitment to diversity, equity, and inclusion, lls recognizes that need exists throughout all geographic regions and within all patient populations, including those traditionally underrepresented. In 2021, financial assistance was provided to patients who resided in 55% of all u.s. Counties and 51% of The counties across The u.s. with The highest poverty rates. Co-pay assistance program The co-pay assistance program supports qualifying blood cancer patients meet their health insurance or medicare plan part b or d premiums or co- payment obligations related to treating their blood cancer diagnosis. Patients with prescription drug coverage, medicare beneficiaries under medicare part b and/or medicare part d, medicare supplementary health insurance or medicare advantage should check with lls to see if they meet eligibility requirements to receive financial support. Co-pay assistance is subject to funding availability by specific blood cancer diagnosis. In 2021, co-pay assistance was provided to over 22,000 patients. Susan lang pre car t-cell therapy travel assistance program lls provided over 200 grants, each 2,500, for treatment-related transportation and lodging costs for patients who are being evaluated to receive car t-cell therapy as either standard treatment or a clinical trial. Susan lang pay-it-forward patient travel assistance program lls awarded a 500 grant to over 4,750 patients for treatment-related transportation and lodging costs. Urgent need program in partnership with moppie's love and charlie's fund, lls provided a 500 grant to nearly 9,000 patients and families in acute financial need for non-medical living expenses-including rent, utilities and food. Patient aid program lls provided a one-time stipend of 100 to over 3,700 patients to help offset non-medical expenses. Scholarship for blood cancer survivors new in 2021 was The introduction of lls's scholarship for blood cancer survivors providing up to 7,500 in tuition support for patients diagnosed before age 25, are u.s. citizens or permanent residents pursuing virtual or in-person, vocational, 2 year or 4 year post-secondary education.