THE LEUKEMIA & LYMPHOMA SOCIETYINC
THE LEUKEMIA & LYMPHOMA SOCIETYINC
THE LEUKEMIA & LYMPHOMA SOCIETYINC
Programs
Blood Cancer Research Programs
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 70 BLOOD CANCER TREATMENT APPROVALS OVER THE LAST FIVE YEARS.AS WE CONTINUED TO SUPPORT THE SEARCH FOR LIFESAVING AND LESS TOXIC TREATMENTS IN 2023, 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 $1.7 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 2023, LLS SUPPORTED RESEARCH IN THE U.S., CANADA AND 9 OTHER COUNTRIES WITH A TOTAL RESEARCH DISBURSEMENT OF APPROXIMATELY $61.96 MILLION. RESEARCH FUNDING WAS DISTRIBUTED ACROSS ALL BLOOD CANCERS.IMPACT RESEARCH GRANTSTO ADDRESS UNEQUAL REPRESENTATION OF UNDERSERVED POPULATIONS IN CLINICAL TRIALS, IN 2021 WE ACTIVATED 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, THEREBY EXPANDING ACCESS TO STATE-OF-THE-ART THERAPIES TO A BROADER SWATH OF NEWLY DIAGNOSED BLOOD CANCER PATIENTS.THERAPY ACCELERATION PROGRAM (TAP)TAP IS LLS' MISSION-DRIVEN, STRATEGIC VENTURE PHILANTHROPY INITIATIVE THAT SEEKS TO ACCELERATE THE DEVELOPMENT OF INNOVATIVE BLOOD CANCER THERAPEUTICS AND CHANGE THE STANDARD OF CARE, WHILE ALSO GENERATING A RETURN ON INVESTMENT FOR THE LLS MISSION. TAP COLLABORATES WITH BIOTECH COMPANIES TO SUPPORT THE DEVELOPMENT OF NOVEL PLATFORMS, FIRST-IN-CLASS ASSETS ADDRESSING UNMET MEDICAL NEEDS, EMERGING PATIENT POPULATIONS AND EVEN RARE BLOOD CANCERS.ESTABLISHED IN 2007, TAP HAS INVESTED MORE THAN $140 MILLION IN OVER 70 PROJECTS. SINCE 2017, FOUR TAP-SUPPORTED THERAPIES HAVE BEEN APPROVED BY THE U.S. FOOD AND DRUG ADMINISTRATION (FDA) OR INCLUDED IN THE NATIONAL COMPREHENSIVE CANCER NETWORK (NCCN) GUIDELINES. CURRENTLY, THERE ARE OVER 20 ACTIVE CLINICAL STUDIES WITH TAP-SUPPORTED THERAPIES, INCLUDING SEVERAL REGISTRATION-ENABLING CLINICAL STUDIES IN BLOOD CANCER THAT COULD LEAD TO MORE FDA APPROVALS.BETWEEN JULY 2022 JUNE 2023 (FY23), TAP MADE INVESTMENTS IN SEVEN BIOTECH COMPANIES THAT INCLUDED THREE EXISTING BIOTECH PARTNERS AND FOUR BRAND NEW UP-AND-COMING BIOTECH COMPANIES, TO HELP THEM NAVIGATE THE DRUG DEVELOPMENT LANDSCAPE AND TO SUPPORT CLINICAL TRIALS FOR BLOOD CANCER PATIENTS. SEVERAL OF THESE COMPANIES ARE BASED IN EUROPE AND NOW, WITH HELP FROM TAP, THESE COMPANIES ARE RUNNING CLINICAL TRIALS IN THE US.NATIONAL PATIENT REGISTRY COVID INFORMATIONTHE 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 9,000 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 TRIALSBEAT AML MASTER TRIALBEGINNING 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 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.ADVANCING HEALTH EQUITYTO OVERCOME DISPARITIES IN HEALTH CARE, WE MUST UNDERSTAND THE OBSTACLES. IN 2022, WE LAUNCHED THIS SIGNATURE PROGRAM AS PART OF OUR LONGSTANDING EFFORT TO UNDERSTAND BARRIERS IN BLOOD CANCER TREATMENT AND IDENTIFY SOLUTIONS TO IMPROVE ACCESS TO CARE. WE GRANTED OVER $4.7 MILLION IN COMBINED FUNDING FOR THREE TEAMS OF PREEMINENT RESEARCHERS, CHARGED WITH UNCOVERING THE ROOT CAUSES OF HEALTH DISPARITIESINFORMATION WE CAN USE TO URGE LAWMAKERS AND HEALTHCARE PRACTITIONERS TO AFFECT POSITIVE CHANGE.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$104.4MPatient Support and Financial Assistance
B) PATIENT & COMMUNITY SERVICES:AN ESTIMATED 1.6 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 ASSISTANCEOUR 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, LLS PROVIDED MORE THAN 69,100 GRANTS TOTALING OVER $246M IN ASSISTANCE AWARDED. THE LION'S SHARE-OVER $229 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 FY23, FINANCIAL ASSISTANCE WAS PROVIDED TO PATIENTS WHO RESIDED IN 86% OF ALL U.S. COUNTIES AND 82% OF THE COUNTIES ACROSS THE U.S. WITH THE HIGHEST POVERTY RATES.CO-PAY ASSISTANCE PROGRAMTHE 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 2023, LLS AWARDED 22,220 GRANTS THROUGH ITS CO-PAY ASSISTANCE PROGRAM.SUSAN LANG PRE CAR T-CELL THERAPY TRAVEL ASSISTANCE PROGRAMLLS AWARDED OVER 5,060 GRANTS EACH IN THE AMOUNT OF $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 PROGRAMLLS AWARDED OVER 8,040 GRANTS EACH IN THE AMOUNT OF $500 FOR TREATMENT-RELATED TRANSPORTATION AND LODGING COSTS.URGENT NEED PROGRAMIN PARTNERSHIP WITH MOPPIE'S LOVE AND CHARLIE'S FUND, LLS AWARDED OVER 16,740 GRANTS EACH IN THE AMOUNT OF $500 FOR NON-MEDICAL LIVING EXPENSES-INCLUDING RENT, UTILITIES, AND FOOD.LOCAL FINANCIAL ASSISTANCE PROGRAM LLS AWARDED OVER 2,410 GRANTS EACH IN THE AMOUNT OF $500 TO COVER NON-MEDICAL LIVING EXPENSES-INCLUDING RENT, UTILITIES, AND FOOD, ETC. FINANCIAL RELIEF FUND LLS AWARDED ONE-TIME STIPENDS OF $250 TO OVER 930 PATIENTS WHO RESIDED IN DESIGNATED ZIP CODES DECLARED FOR INDIVIDUAL ASSISTANCE BY FEMA, IN FLORIDA AND PUERTO RICO TO ALLEVIATE FINANCIAL HARDSHIP AS A RESULT OF THE HURRICANES. PATIENT AID PROGRAM LLS AWARDED ONE-TIME STIPENDS OF $100 TO OVER 18,640 PATIENTS TO HELP OFFSET NON-MEDICAL EXPENSES. SCHOLARSHIP FOR BLOOD CANCER SURVIVORSIN 2023, THE LLS SCHOLARSHIP FOR BLOOD CANCER SURVIVORS AWARDED 176 SCHOLARSHIPS EACH UP TO $7,500 IN TUITION SUPPORT FOR VIRTUAL OR IN-PERSON VOCATIONAL, TWO-YEAR, OR FOUR-YEAR UNDERGRADUATE EDUCATION.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$141MPublic Health Education Initiatives
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.ONE-ON-ONE EDUCATION AND SUPPORTTRAINED ONCOLOGY INFORMATION SPECIALISTS IN OUR INFORMATION RESOURCE CENTER (IRC) PROVIDE PATIENTS AND CAREGIVERS WITH COMPASSIONATE, COMPREHENSIVE, AND TAILORED DISEASE AND TREATMENT INFORMATION, INCLUDING REFERRALS AND LINKS TO APPROPRIATE EDUCATIONAL RESOURCES AND LITERATURE; PSYCHOSOCIAL SUPPORT INFORMATION FOR ANY POINT IN THEIR TREATMENT JOURNEY; REFERRALS TO RELEVANT LOCAL, STATE AND/OR NATIONAL RESOURCES FOR ASSISTANCE; COVID-19 RELATED INFORMATION AND GUIDANCE; AND FINANCIAL RESOURCE INFORMATION TO COVER COSTS OF TREATMENT, TRAVEL, URGENT NEEDS AND MORE. OVER 25,000 INTERACTIONS BETWEEN THE IRC AND PATIENTS AND CAREGIVERS TOOK PLACE LAST YEAR.FACILITATING CLINICAL TRIAL ACCESSTHE 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 1,345 PATIENTS (AN INCREASE OF 34% OVER 2022). TWENTY THREE PERCENT OF THESE PATIENTS ENTERED A TRIAL.OUTREACH TO UNDERSERVED GROUPSWE 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 STAFF AND VOLUNTEERS. WE ALSO INCREASED ACCESSIBILITY OF OUR EDUCATION PROGRAMS TO RURAL PATIENTS AND FAMILIES VIA OUR VIRTUAL OFFERINGS.MOREOVER, WE EXPANDED PARTNERSHIPS WITH ADDITIONAL AFFINITY GROUPS INCLUDING: THE BALM IN GILEAD, NCI'S NATIONAL OUTREACH NETWORK, MIGRANT CLINICIANS NETWORK, AND THE MEDICAL ORGANIZATION FOR LATINO ADVANCEMENT.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 2023, LLS REACHED OVER 60,000 PEOPLE THROUGH APPROXIMATELY 50 MYELOMA LINK EDUCATION AND OUTREACH ACTIVITIES IN 16 CITIES.IN 2023, THE LLS LATINO OUTREACH PILOT REACHED OVER 115,000 SPANISH-SPEAKING COMMUNITY MEMBERS THROUGH COMMUNITY PROGRAMS ACROSS 7 MAJOR HISPANIC MARKETS (INCLUDING PR) AND OUR PARTNERSHIP WITH ENTRAVISION AND PRIME TIME INTERVIEWS WITH BOTH UNIVISION AND TELEMUNDO. EDUCATION AND PATIENT CONNECTIONSOUR 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, 950 CANCER PATIENTS WERE PROVIDED WITH PERSONALIZED NUTRITION CONSULTATIONS BY LLS'S REGISTERED DIETITIANS.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 1,900 PATIENTS WITH TRAINED VOLUNTEERS FACING THE SAME DISEASE.IN ADDITION, MEMBERSHIP IN LLS COMMUNITY-OUR ONLINE SOCIAL NETWORK- WAS 20,852, AN INCREASE OF 9% OVER FISCAL YEAR 2022.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$19.6M
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