DISP-08. UNMET NEEDS: WHAT PEOPLE LIVING WITH GLIOBLASTOMA LACK TODAY, INCLUDING ACCESS TO CRITICAL GENOMIC TUMOR TESTING

Abstract

Abstract PURPOSE In 2022 and 2023, the non-profit OurBrainBank asked its community of people living with glioblastoma and care partners about the current state of GBM treatment in the USA including whether the patient received genomic tumor analysis. METHOD: OurBrainBank conducted an online survey in which we posted queries through two Facebook groups: “Glioblastoma — GBM SURVIVORS TO THRIVERS!” and “OurBrainBank GBM Patient & Caregiver Community.” RESULTS More than 100 people responded to the Facebook posts stating the priorities they felt they most needed. Top of the list were faster FDA approval for promising therapies, better treatment for veterans, speedier approval for disability benefits as well as common-sense improvements to Medicare/Medicaid, a stop to unreasonable insurance practices, and more flexibility regarding clinical trials. For the survey, 133 people responded. Of the sample group, 50% reported that they had not been informed about tumor testing and 70% said they were unsure or not informed about storing tumor tissue. For the 30% who knew about storing tissue, only half actually had done so. More than 50% did not know about tumor types or mutations. Only half felt that they received enough information to make educated decisions. Those living in urban areas or able to travel received care at hospitals that specialized in brain tumors, but by contrast people living in rural areas or far from a center of excellence did not. Half of respondents felt that they did not enjoy an equal and collaborative relationship with their medical team. CONCLUSION GBM patients and their caregivers are not treated consistently, particularly in regard to genomic tumor testing, a vital first step toward personalized treatment. Many do not receive optimal care and may not even see a specialist. With a median survival rate of 12-18 months, there is much improvement needed.