Program areas at ICAN
Patient navigation programs, including patient program services/research Advocacy programs/cancer research services of which 300,000 was awarded in grants to investigators associated with or collaborating with Ican's International research consortium, including the university of Texas md anderson Cancer center, the university of Texas southwestern, the university of Pennsylvania, the university of pittsburgh, and the university of California, san francisco. Grants were awarded for proposals relating to molecular alterations and resistance mechanisms, development of drugs with new mechanisms of action, development of early detection assays, and research regarding leptomeningeal disease (lmd). The 2023-2024 grant cycle was funded by Ican's special events, including the annual fistbump fundraiser and the annual applied underwriting golf tournament as well as by Ican memorial and tribute programs. Ican's exon 20 International research consortium consists of top thoracic research oncologists and scientists who have produced an array of transformative journal articles that are propelling the field of actionable mutations forward. Ican's patient services focus on hematological, solid tumor, synchronous cancers, and rare cancers. Our patients, care partners, and research advocates review clinical trial concepts, protocols, and informed consent forms. The organization's oncology nursing services and angel buddies/met mentors (peer-to-peer patient and care partner advisors) assist patients and their families with side effects mitigation strategies throughout clinical trials and standard treatment. Under the Ican nonprofit umbrella, Ican manages the exon 20 group (egfr exon 20 warriors/her2 warriors), the met crusaders, the biomarker collaborative, and the pd-l1 amplifieds.
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.
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 the preservation of the bayh-dole program; supporting biomarker testing bills (passed in 20 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.