International Cancer Advocacy Network

Patient, care partner, and clinician education/ u.s. And global patient access programs-focusing on patient access to molecular testing and precision medicine; u.s. And global access issues related to under- resourced patient communities; early detection (imaging and molecular diagnostics); ongoing health information projects for exon 20 group, met crusaders, biomarker collaborative, and pan-tumor ican programs; and access issues regarding expanded access/pre-approval access/compassionate use programs in the u.s. And abroad. Ican's public policy advocacy efforts were vigorously pursued at the state and federal levels, including issues such as the inflation reduction act and fixing the small molecule penalty; weighing in on prescription drug affordability boards; supporting pbm reform; supporting 340b program reform; advocating for the preservation of the bayh-dole program; supporting biomarker testing bills (passed in 22 states and counting); supporting co-pay accumulator and rebate reform bills (active participant in the "all copays count coalition"), and opposing state-led efforts that impede patient access to novel therapeutics, such as step therapy/fail- first therapy where we have vigorously opposed those anti-patient practices since 2012.

Molecular profiling connection services/clinical trials matching services: 1) advising patients on the importance of next-generation sequencing and educating them about the array of molecular profiling technologies that can either be accessed by patients and/or researchers--dna, rna, and thus multi-omics: genomics, proteomics, transcriptomics, metabolomics, methylation, immune cell studies, and so forth; 2) reviewing molecular profiling reports with patients and their care partners; 3) convening ad hoc molecular tumor boards where needed, with the input of members of ican's biomarkers council, physicians council, and drug development council; 4) educating patients about molecular tumor boards (e.g. Target cancer's track study, asco tapur study; roche navify); and, 5) connecting patients to principal investigators and study teams on a pan-tumor/pan- heme/pan-rare cancer basis if an appropriate clinical trial is a molecular match. Ican and its support groups are also engaged in the areas of decentralizing trials; "just-in-time" trials; and expediting the transfer of patients from one clinical trials site (mid-regimen) to another more convenient site (u.s. To u.s. Or eu to u.s.). Ican, the exon 20 group, and the met crusaders specialize in clinical trial accrual and retention issues as well as clinical trials site selection issues. The biomarker collaborative 1) connects patients to both the appropriate specific biomarker support group and the relevant general organizations that cover the patient's specific cancer type; and 2) educates patients about their driver mutation, amplification or fusion (if identified by the relevant laboratory's report) as well as their gene co-alterations. Ican and its support organizations each stress the importance of multi-stakeholder collaborations with research advocates, patient advocates, community advocates, clinicians, and scientists.