INTL CANCER ADVOCACY NETWORK
27 W MORTEN AVENUE, PHOENIX, AZ 850217246 www.askican.org

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Organizations Filed Purposes: ICAN PROVIDES ADVOCACY, INFORMATION AND STRATEGIC OPTIONS FOR LATE-STAGE CANCER PATIENTS

ICAN PROVIDES PATIENTS WITH CANCER CASE MANAGEMENT, CLINICAL TRIALS AND MOLECULAR PROFILING OPTIONS ACROSS THE U.S. AND IN 53 COUNTRIES. ICAN OFFERS CUTTING-EDGE INFORMAITON AND REFERRALS TO WORLD CLASS SPECIALISTS AS WELL AS TO OTHER TREATMENT MODALITIES THAT MAY HAVE BEEN OVERLOOKED BY THE PATIENT'S TEAM (E.G. SURGERY, RADIATION, ANESTHESIOLOGY OR INTERVENTIONAL RADIOLOGY). ICAN ASSISTS WITH CLINICAL TRIALS ENROLLMENT, COMPASSIONATE USE/EXPANDED ACCESS AND MOLECULAR PROFILING OPTIONS-PROVIDING DIRECT NAVIGATION AND EMPOWERMENT TOOLS AT EACH STEP OF THE PATIENT'S BATTLE. ICAN IS ALSO WORKING ON THE DEVELOPMENT OF HEALTH INFORMATION TECHNOLOGY INITIATIVES THAT ARE CROSS-PLATFORM AND INVOLVE VARIOUS ASPECTS OF THE RESEARCH CONTINUUM. 1)PATIENT SERVICES ICAN CONTINUED TO DEVELOP ITS PATIENT PROGRAM SERVICES IN HEALTH CARE ACCESS, PERSONALIZED MEDICINE AND NOVEL CANCER THERAPEUTICS, MOLECULAR PROFILING AND TARGETS, AND PATIENT CASE NAVIGATION, SERVING, VIA PUBLIC INQUIRIES AND DIRECT PATIENT NAVIGATION, MORE THAN 850 PATIENTS/SPOUSES/FAMILY MEMBERS/CAREGIVERS. ICAN HANDLED A MULTIPLICITY OF TOPICS FROM HEALTH CARE ACCESS, INSURANCE ISSUES, CONTINUITY OF CARE, REFERRALS TO EXPERT ONCOLOGISTS AND SPECIALISTS, PRECISION MEDICINE AND MOLECULAR DIAGNOSTICS ISSUES, EXPANDED ACCESS/COMPASSIONATE USE, TO CLINICAL TRIALS ENROLLMENT AND RETENTION. PATIENTS WERE REFERRED BY PAST AND CURRENT PATIENTS; PHYSICIANS, NURSES, AND HEALTH CARE PROFESSIONALS; BOARD AND COUNCIL MEMBERS OF THE ORGANIZATION; VOLUNTEERS THROUGHOUT ICAN'S GLOBAL VOLUNTEER NETWORK OF NEARLY 1100 HIGHLY QUALIFIED PROFESSIONALS, POST-DOCTORAL STUDENTS, MEDICAL SCHOOL STUDENTS, AND UNIVERSITY STUDENTS; EXPOSURE AT CONFERENCES; AND THE GROWING REACH OF ICAN'S WEBSITE WHICH ATTAINED "HONCODE CERTIFICATION" FROM THE PRESTIGIOUS HEALTH ON THE NET FOUNDATION IN 2014. ICAN'S PATIENT SERVICES RECEIVED ADDED EXPOSURE THROUGHOUT THE CANCER PATIENT COMMUNITY BY BEING LISTED AS THE ONLY RECOMMENDED CANCER PATIENT ADVOCACY CHARITY IN DR. ROBERT A. NAGOURNEY'S BOOK "OUTLIVING CANCER: THE BETTER, SMARTER WAY TO TREAT YOUR CANCER." ICAN WAS NAMED A MEMBER OF THE STAND UP TO CANCER DREAM TEAM FOR COLON CANCER, WORKING WITH DREAM TEAM LEADER GERRIT MEIJER, MD, PHD, PROFESSOR OF PATHOLOGY AT THE NETHERLANDS CANCER INSTITUTE IN AMSTERDAM AND VICTOR E. VELCULESCU, MD, PHD, PROFESSOR OF ONCOLOGY AND PATHOLOGY AT THE JOHNS HOPKINS SIDNEY KIMMEL COMPREHENSIVE CANCER CENTER IN BALTIMORE. ICAN, THROUGH ITS PROFESSIONAL COUNCILS, FOCUSED ON ISSUES SUCH AS SMALL MOLECULE KINASE INHIBITORS, BIOLOGICAL AGENTS, NATURAL PRODUCTS, MONOCLONAL ANTIBODIES, IMMUNOTHERAPY CHECKPOINTS AND PD1 IMMUNE CHECKPOINT INHIBITION AS WELL AS THERAPEUTIC VACCINES. ADDITIONAL EXPERTS WERE ADDED TO ICAN'S BIOMARKERS COUNCIL ON THE SUBJECTS OF CIRCULATING TUMOR DNA AND LIQUID BIOPSIES TO ASSESS CLONAL EVOLUTION AND DRUG RESISTANCE. THE ORGANIZATION CONTINUED TO PURSUE ITS "TUMOR BOARD" APPROACH TO THE MOST DIFFICULT OR INTRACTABLE PATIENT CASES, UTILIZING RELEVANT MEMBERS FROM ITS PHYSICIANS ADVISORY COUNCIL, ITS SCIENTIFIC ADVISORY COUNCIL, AND ITS BIOMARKERS COUNCIL. GRATEFUL PATIENTS AND THEIR FAMILIES ESTABLISHED THE FOLLOWING NAMED PROGRAMS AT ICAN IN MEMORY OF THEIR LOVED ONES: THE ANTHONY BUA PATIENT ADVOCACY PROGRAM, THE HEMANGI DHAVALE MAHABALESHWARKAR BREAST CANCER CLINICAL TRIALS PROGRAM, THE CAROL AND MICHAEL HEARONS FAMILY ADVOCACY PROGRAM, THE ELAINE MICHAEL-PRICE CANCER PATIENT ADVOCACY PROGRAM, THE MITZI HARAMINA BIOLOGIC MEDICINES AND BIOSIMILARS PATIENT SAFETY PROGRAM, THE HELEN JODICE LIVER-DIRECTED THERAPIES PROGRAM, THE ROBERT KEENE SCHURMAN COMPASSIONATE USE/EXPANDED ACCESS PROGRAM, THE JAHANGIR AFSHARINASAB CANCER PATIENT ADVOCACY PROGRAM, AND THE ANDY HURWITZ GUIDING LIGHT PROGRAM. THE ICAN BIOMARKERS COUNCIL IS COMPRISED OF GLOBAL KEY OPINION LEADERS AND GIFTED AND ACCOMPLISHED SCIENTISTS FROM TOP, CUTTING EDGE INDUSTRY AND ACADEMIC PROGRAMS. LED BY SCOTT M. KAHN, PH.D., AN ONCOLOGY AND BIOMARKERS EXPERT FROM COLUMBIA UNIVERSITY AND ONCOSTEM BIOTHERAPEUTICS, BIOMARKERS COUNCIL MEMBERS PROVIDE ICAN WITH DEEP EXPERTISE IN MANY ASPECTS OF BIOMARKER THEORY AND TECHNOLOGY AS WELL AS STATE OF THE ART APPLICATIONS TO INDIVIDUAL CANCER CASES AND THERAPEUTIC REGIMENS. THROUGHOUT 2014, THE BIOMARKERS COUNCIL ROUTINELY SUPPORTED OF ICAN'S EFFORTS WITH INDIVIDUAL PATIENT CASES, INTERPRETING MOLECULAR PROFILING RESULTS AND RESEARCHING AND PROVIDING ANSWERS TO SPECIFIC QUESTIONS AND PROJECTS RELATED TO PROPOSED PATIENT BIOMARKER STRATEGIES. THE BIOMARKERS COUNCIL ASSISTED WITH MANY CHALLENGING PATIENT CASES, INCLUDING AMONG OTHERS, CANCERS OF UNKNOWN PRIMARY, AND AN EXCEEDINGLY RARE CASE OF METASTATIC MERKEL CELL CARCINOMA. UPON REQUEST, THE BIOMARKERS COUNCIL MADE USE OF ITS DEEP ACADEMIC/INDUSTRY NETWORK, VIGOROUSLY CONTACTING LEADING SCIENTISTS, CLINICIANS, AND DECISION MAKERS FOR THE PURPOSE OF ACCESSING CUTTING-EDGE CLINICAL, DIAGNOSTIC, AND THERAPEUTIC OPTIONS ON BEHALF OF ICAN'S PATIENTS. AD HOC TUMOR BOARDS, BASED ON BIOMARKER COUNCIL MEMBER SPECIALTIES, ASSISTED ICAN PATIENT SERVICES ON AN AS-NEEDED BASIS, ESPECIALLY ON RARE PRESENTATIONS OF RARE CANCERS OR SYNCHRONOUS CANCER CASES. BIOMARKERS COUNCIL MEMBERS REPRESENTED ICAN AT MAJOR CONFERENCES AND SYMPOSIA. IN 2014, THESE PRESENTATIONS INCLUDED: 01-14: CLINICAL GENOMICS 2014, BOSTON 09-14: WORLD CDX 2014, BOSTON 10-14: SELECTBIO LIQUID BIOPSIES MEETING, SAN DIEGO 11-14: WORLD CIRCULATE CONFERENCE (CIRCULATING BIOMARKERS), BOSTON (SCOTT M. KAHN, PHD-CHAIRMAN) ICAN BIOMARKERS COUNCIL MEMBERS ALSO PARTICIPATED IN THE MARCH 14, 2014 ALLIANCE FOR PATIENT ACCESS PHYSICIAN COUNCIL ON THE TOPIC OF BIOSIMILAR LEGISLATION AND THE APRIL 14, 2014 BIO FLY-IN COVERING THE ACA, PHYSICIAN REIMBURSEMENT, PDUFA AND REGULATORY ISSUES, BIOSIMILAR LEGISLATION, MOLECULAR PROFILING, AND FACE TO FACE DISCUSSIONS WITH MEMBERS OF CONGRESS AND SENIOR STAFF MEMBERS. A SYNOPSIS OF ICAN WAS INCLUDED IN AN ARTICLE PUBLISHED IN THE SCIENTIFIC JOURNAL, FUTURE MEDICINE, DETAILING THE HANSON WADE "NGS FOR CANCER DRUG DEVELOPMENT" CONFERENCE: SCOTT M KAHN. NEXT-GENERATION SEQUENCING FOR CANCER DRUG DEVELOPMENT: THE PRESENT AND VISIONS FOR THE FUTURE. PERSONALIZED MEDICINE, VOL. 11, NO. 2, PAGES 139-142. HTTP://WWW.FUTUREMEDICINE.COM/DOI/PDF/10.2217/PME.13.113 THE BIOMARKERS COUNCIL PROVIDED ICAN WITH WORLD CLASS EXPERTISE, VISION, AND SUPPORT IN THE FIELDS OF MOLECULAR PROFILING AND CANCER. IT ALSO SERVES AS AN ILLUSTRIOUS SCIENTIFIC RESOURCE-FROM PRESENTING AT MAJOR SCIENTIFIC CONFERENCES TO PROVIDING TESTIMONY ON TOPICS AFFECTING ICAN'S PATIENT SERVICES TO ADVOCATING ON BEHALF OF CANCER PATIENTS WITH ELECTED OFFICIALS AND REGULATORY AGENCIES. BIOMARKER COUNCIL MEMBER AJAY MALIK, PHD OVERSEES SOCIAL MEDIA PLATFORMS WITH WHICH ICAN IS ACTIVELY ENGAGED. THIS INCLUDES AN ACTIVE PRESENCE IN CYBERSPACE ON LINKEDIN.COM ESPECIALLY. THE BIOMARKERS COUNCIL REPRESENTS ICAN ON PUBLIC POLICY ISSUES INCLUDING, BUT NOT LIMITED TO, ACCESS TO ORAL CHEMOTHERAPY DRUGS AND BIOSIMILARS, PERSONALIZED MEDICINE AND MOLECULAR DIAGNOSTIC TESTING COSTS AND REIMBURSEMENTS. ON ISSUES OF MUTUAL INTEREST, MEMBERS REPRESENT ICAN IN A VARIETY OF CAPACITIES WITH OUTSIDE ENTITIES. IN 2014, THE ICAN BIOMARKERS COUNCIL CONTINUED TO LEAD EFFORTS TO PAVE THE WAY FOR THE ADOPTION OF WHOLE GENOME SEQUENCING (WGS) AND RNA TRANSCRIPT SEQUENCING (RNASEQ) AS A REIMBURSABLE DIAGNOSTIC TOOL FOR LATE STAGE CANCER PATIENTS. LOOKING FORWARD, WGS/RNASEQ PROMISES TO BETTER IDENTIFY CLINICALLY ACTIONABLE MUTATIONS IN CANCERS, AND TO PROVIDE A LESS COSTLY ALTERNATIVE TO MULTIPLE MOLECULAR PROFILING TESTS. BIOMARKERS COUNCIL MEMBERS SPOKE WITH KEY OPINION LEADERS IN INDUSTRY, ACADEMIA, AND GOVERNMENT TO ASSESS HURDLES THAT STAND IN THE WAY OF IMPLEMENTATION, AND HOW THEY MIGHT BE OVERCOME. AS PART OF THE ORGANIZATION'S OVERALL PROGRAM SERVICES, ICAN ADDRESSED THE FOLLOWING ONGOING ISSUES DURING 2014: A)ONGOING DEVELOPMENT OF THE ORGANIZATION'S CLINICAL TRIALS SEARCH ENGINE CALLED REMISSION COACH, PATENT PENDING. ICAN CONTINUED TO DEVELOP ITS INNOVATIVE AND PROPRIETARY SEARCH SYSTEM, REMISSION COACH, PATENT PENDING. THE ORGANIZATION'S LEADERSHIP AND MANAGEMENT CONSULTED WITH, AND WORKED WITH, SEARCH ENGINE DEVELOPMENT EXPERTS. ICAN LEADERS HAVE MET WITH ACADEMIA, GOVERNMENT, AND INDUSTRY. ENTHUSIASM OVER THE UNIQUENESS OF THE REMISSION COACH CONCEPT WAS UNIVERSALLY EXPRESSED, AND DEVELOPMENT IS ONGOING. B)PUBLIC EDUCATION ON ACCESS TO CARE, ACCESS TO ORAL THERAPEUTICS, AND BIOSIMILARS PRESCRIBER COMMUNICATION. ICAN PATIENTS AND MEMBERS OF ITS PHYSICIANS ADVISORY COUNCIL TESTIFIED IN STATES ON THE ISSUES OF ACCESS TO ORAL THERAPEUTICS AND PRESCRIBER COMMUNICATION FOR BIOSIMILAR DRUGS. ICAN'S CEO PRESENTED TALKS AND PARTICIPATED IN PANEL DISCUSSIONS AT MAJOR CONFERENCES ON BIOSIMILARS TO DISCUSS THE ORGANIZATION'S WORK EDUCATING MEMBERS OF THE PUBLIC AND PATIENT COMMUNITY ABOUT BIOLOGIC DRUGS AND BIOSIMILARS. C)EXPEDITING AND ACCELERATING THE AN

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