Leukemia & Lymphoma Society Inc

OUR MISSION IS TO CURE LEUKEMIA, LYMPHOMA, HODGKIN'S DISEASE AND MYELOMA, AND IMPROVE THE QUALITY OF LIFE OF PATIENTS AND THEIR FAMILIES.

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 2022, 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 1.6 BILLION IN RESEARCH AIMED AT HELPING ALL BLOOD CANCER PATIENTS LIVE BETTER, LONGER LIVES. OUR SUSTAINED RESEARCH INVESTMENT OVER MULTIPLE DECADES HAS PAID OFF HANDSOMELY. THIS IS BEST DEMONSTRATED BY OUR SEMINAL INVESTMENT IN CHIMERIC ANTIGEN RECEPTOR T CELL (CAR T) THERAPY STARTING IN 1990 THAT, SINCE 2017, HAS TRANSLATED INTO A 12 FDA-APPROVED CAR T THERAPIES FOR ACUTE B-CELL LEUKEMIA, NON-HODGKIN LYMPHOMA, AND MULTIPLE MYELOMA. CAR T THERAPY HAS IN SOME CASES PRODUCED CURES IN PATIENTS WHO HAVE FAILED ALL OTHER THERAPEUTIC OPTIONS. IN FISCAL YEAR 2022, LLS SUPPORTED RESEARCH IN THE U.S., CANADA AND 9 OTHER COUNTRIES WITH A TOTAL RESEARCH DISBURSEMENT OF APPROXIMATELY 54.6 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. WE NOW HAVE SIX IMPACT RESEARCH GRANTS IN PLACE SINCE OCTOBER 2022. 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 OVER 70 BIOTECHNOLOGY COMPANIES AND ACADEMIC RESEARCHERS TO EXTEND THE THERAPEUTIC LANDSCAPE IN LEUKEMIA, LYMPHOMA, AND MULTIPLE MYELOMA BY INVESTING OVER 130 MILLION DOLLARS, AND SO FAR, LEADING TO 3 FDA APPROVALS. CURRENTLY, THERE ARE OVER 20 ACTIVE CLINICAL STUDIES WITH TAP-SUPPORTED THERAPIES, INCLUDING 4 LATE- STAGE CLINICAL STUDIES WITH CLINICAL DATA EXPECTED IN THE NEXT YEAR OR TWO THAT COULD LEAD TO NEW FDA APPROVALS FOR BLOOD CANCER PATIENTS. IN 2022, WE MADE FOUR INVESTMENTS IN COMPANIES DEVELOPING NEXT-GENERATION IMMUNOTHERAPIES INCLUDING TWO FROM EUROPE. THESE INVESTMENTS GO BEYOND THE TRADITIONAL T CELL THERAPY SUCH AS CAR-T OR BI-SPECIFICS AND INCLUDE TWO CHECKPOINT INHIBITORS USING MACROPHAGES OR MYELOID CELLS TO ELICIT THE ANTI-CANCER EFFECTS. WE ALSO INVESTED IN COMPANIES DEVELOPING NOVEL ANTIBODIES, ONE A GAMMA-DELTA T CELL ACTIVATING ANTIBODY FOR A VARIETY OF BLOOD CANCERS AND ANOTHER ANTIBODY FOR A NOVEL TARGET IN PATIENTS WITH RARE BLOOD CANCERS INCLUDING LARGE GRANULAR LYMPHOCYTIC LEUKEMIA AND CYTOTOXIC LYMPHOMAS WHERE THERE IS NO STANDARD OF CARE AND CURRENT THERAPIES ARE TOO TOXIC FOR PATIENTS. ALL FOUR COMPANIES ARE IN ACTIVE CLINICAL DEVELOPMENT IN BLOOD CANCERS. 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. PEDAL MASTER TRIAL IN 2022, LLS LAUNCHED LLS' PEDIATRIC ACUTE LEUKEMIA (PEDAL) MASTER CLINICAL TRIAL. THIS UNPRECEDENTED INTERNATIONAL COLLOBORATION BETWEEN LLS, THE NATIONAL CANCER INSTITUTE (NCI), THE CHILDREN'S ONCOLOGY GROUP (OCG) AND OTHER PARTNERS BREAKS NEW GROUND, BRINGING PRECISION MEDICINE TO THE TREATMENT OF PEDIATRIC RELAPSED ACUTE LEUKEMIA. RATHER THAN A "ONE SIZE FITS ALL" APPROACH, PEDAL USES GENOMICS AND OTHER BIOMARKERS TO CUSTOMIZE TREATMENT, ALLOWING INNOVATIVE THERAPIES TO BE MATCHED TO PATIENTS BASED ON THEIR UNIQUE TUMOR BIOLOGY. A WIDE RANGE OF TRIAL SCREENIN LOCATIONS - SPANNING EUROPE, AUSTRALIA, NEW ZEALAND, CANADA, AND OVER 200 US SITES - ENSURES WIDESPREAD PARTICIPATION. ARKANSAS CHILDRESN'S HOSPITAL BECAME THE FIRST US THERAPEUTIC TRIAL SITE IN 2022, WITH MORE TO COME.

B) PATIENT & COMMUNITY SERVICES: AN ESTIMATED 1.5 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 ALLEVIATE THE BURDENS FELT BY PATIENTS COPING WITH BLOOD CANCER, WE PROVIDED MORE THAN 75,400 PATIENTS WITH OVER 384M IN ASSISTANCE AWARDED, A 59% INCREASE OVER LAST YEAR. THE LION'S SHARE-OVER 371 MILLION- AWARDED TO 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 FY22, FINANCIAL ASSISTANCE WAS PROVIDED TO PATIENTS WHO RESIDED IN 82% OF ALL U.S. COUNTIES AND 74% 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 2022, CO-PAY ASSISTANCE WAS PROVIDED TO OVER 36,800 PATIENTS. SUSAN LANG PRE CAR T-CELL THERAPY TRAVEL ASSISTANCE PROGRAM LLS PROVIDED OVER 420 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 11,050 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 11,750 PATIENTS AND FAMILIES IN ACUTE FINANCIAL NEED FOR NON-MEDICAL LIVING EXPENSES-INCLUDING RENT, UTILITIES, AND FOOD. PATIENT AID PROGRAM LLS AWARDED ONE-TIME STIPENDS OF 100 TO OVER 15,400 PATIENTS TO HELP OFFSET NON-MEDICAL EXPENSES. SCHOLARSHIP FOR BLOOD CANCER SURVIVORS IN 2022, THE LLS SCHOLARSHIP FOR BLOOD CANCER SURVIVORS PROVIDED UP TO 7,500 IN TUITION SUPPORT TO 100 PATIENTS, FOR VIRTUAL OR IN-PERSON VOCATIONAL, TWO-YEAR, OR FOUR-YEAR UNDERGRADUATE EDUCATION.

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. NEARLY 26,000 INTERACTIONS BETWEEN THE IRC AND PATIENTS AND CAREGIVERS TOOK PLACE, WITH AVERAGE CALL LENGTHS UP 14% OVER 2021. 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 1,005 PATIENTS (ABOUT THE SAME AS IN 2021). OF THE 751 NEW PATIENTS ASSISTED, 19% ENTERED A TRIAL. 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 BLACK 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 NATIONAL COALITION OF 100 BLACK WOMEN, THE BLACK CAUCUS OF THE AMERICAN LIBRARY, VISIONS Y COMPROMISO AND THE MEXICAN CONSULATE'S VENTANILLA DE SALUD PROGRAM. 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 2022, LLS REACHED NEARLY 22,000 PEOPLE THROUGH MORE THAN 60 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, 1,060 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 2,100 PATIENTS (UP 17% FROM 2021) WITH TRAINED VOLUNTEERS FACING THE SAME DISEASE, HELPING TO AVERT PANDEMIC-RELATED ISOLATION. IN ADDITION, MEMBERSHIP IN LLS COMMUNITY-OUR ONLINE SOCIAL NETWORK- WAS 19,181, AN INCREASED 8% OVER 2021.

D) PROFESSIONAL EDUCATION: LLS SERVES THE EDUCATIONAL NEEDS OF THE MEDICAL AND RESEARCH COMMUNITY THROUGH A NUMBER OF PROFESSIONAL EDUCATION SYMPOSIA OFFERED THROUGHOUT THE YEAR. THE EDUCATIONAL PROGRAM OFFERS VARYING FORMATS TO FACILITATE THE EXCHANGE OF INFORMATION AND IDEAS ON THE NEWEST DEVELOPMENTS IN CANCER RESEARCH AND TREATMENT. UPCOMING AND ARCHIVED CE/CME PROGRAMS ARE AVAILABLE AT WWW.LLS.ORG/CE. IN FY 2022: -LLS PROVIDED 14 CME/CE-GRANTING VIRTUAL EDUCATIONAL PROGRAMS, WITH 873 HEALTHCARE PROFESSIONALS IN ATTENDANCE. - OVER 28,000 PATIENTS AND PROFESSIONALS PARTICIPATED IN LIVE EDUCATION PROGRAMS DELIVERED VIRTUALLY AS WELL AS DELIVERED IN PERSON, LOCALLY AND REGIONALLY. --THERE WERE 104,173 PAGE VIEWS FOR ARCHIVED WEB PROGRAMS, 35,663 VIRTUAL LECTURE VIEWS AND 97,685 PODCAST DOWNLOADS.