Causes: Cancer, Health

Mission: ICAN provides Personalized Medicine Cancer Case Management Programs, through its customized patient advocacy services, to Stage IV patients who urgently need new therapeutic options to consider. The organization specializes in complex and rare diagnoses, whether pediatric or adult cancers. ICAN, given years of experience with oncology issues and the anticancer drug pipeline, assists patients in the battle to extend life with high quality of life through physician referrals, cutting-edge information and advocacy services, clinical trials research, pre-approval access or "compassionate use" analysis, molecular profiling services, and palliative care program services. ICAN has been profiled in Newsweek based on the still enduring complete remission of one of its breast cancer patients and in Pharmaceutical Executive Magazine (where ICAN was viewed as the exemplar of cancer patient advocacy--out of 5000 organizations to choose from). ICAN has also been featured in the Robert A. Nagourney, M. D. 's pivotal book "Outliving Cancer" and is featured in the biography of anticancer drug discoverer G. Robert Pettit, PhD. Implementing ICAN's mission, vision, values, and programs are board leaders who work tirelessly in partnership with staff and a huge global volunteer network spanning multiple time zones. ICAN's Board leadership includes Founding Chair Sidney M. Rosen, Esq. , Board of Trustees Chair Sherry Weinstein, Vice Chair Robert H. Tamis, MD, Advisory Council Chair Cathy Dalzell, and Honorary Board of Trustees Chair Cheryl J. Hintzen-Gaines. Marcia K. Horn, JD is President and CEO. Scott M. Kahn, PhD chairs the Biomarkers Council. Robert T. Hanlon, PhD is Co-Chair of the International Corporate Advisory Council and Chairman and Co-Founder of the Exon 20 Group at ICAN. Our National Board leadership, including Wendy Look, Cathy Dalzell, Chuck Clayton, Michael Beacham, Bob Mazyczek, Barb Rigdon, and Kim Emerson are active in ICAN special events and fund development on behalf of several of our top cancer programs. AJ Brown, Jr. is Director of Health Equity in the Linda Jenckes Health Care Public Policy Program at ICAN. Ashraf Abdel-Ghany, MD directs special projects in medical affairs for ICAN. Our Research Services and Global Human Resources are led by Andrew Young and Janet Young. Tim Wang is our Director of Graphic Design, and Lynne Cory is our Director of Web Development.

Results: ICAN is leading the international multi-stakeholder coalition, the Exon 20 Group, which consists of the world's leading thoracic oncologists and physician-scientists as well as patients, caregivers, pharmaceutical and biotech companies, academic medical center and commercial lab molecular pathologists, and EGFR and HER2 exon 20 insertion-focused scientists. The Exon 20 Group represents patients from 54countries. We are following each patient in the Group, insertion mutation by insertion mutation, and providing Molecular Tumor Board services (as we do for ICAN solid tumor patients with complex cases) at no charge to patients who are progressing on exon 20-specific agents. Because we are following patients so closely in not only exon 20-specific clinical trials but other trials for our other solid tumor/blood cancer patients, we are able to provide study teams with important insights. We are also able to advise the biopharma community about protocol amendments and improved trial design in what all stakeholders understand to be a dynamic and challenging area. As a general matter regarding the "metrics" discussion, when one is dealing with individual cancer patients and their specific cases, the metrics are extending time to progression and disease-free survival in addition to patient-reported outcomes on management of side effects and quality of life issues. The metrics question becomes "compared to what?" since no cancer patient is like any other cancer patient. The one metric that counts at ICAN is an overwhelming number of our patients, given the countless accolades we have received over the past 25 years, testify to ICAN's pivotal assistance in making a critical difference in life prolongation and quality of life issues. On the metric of "Was there a stone left unturned in the patient's journey with cancer?", our ICAN patients and their families resoundingly answer "No" year after year.

Target demographics: Metastatic cancer patients, especially those with rare cancers or unusual presentations of commonly-diagnosed tumors or blood cancers

Direct beneficiaries per year: Nearly 1400 patients and care partners, including more than 600 patients and caregiversfrom 54 countries dealing with a rare oncogene now found in 25 separate cancers. Our legislative and policy work has helped patient-physician communications and assisted clarity in the biologics and biosimilars area as well as improved patient access and patient-physician-pharmacist communications for hundreds of thousands of patients across the United States. We also advise fellow patient advocates on advocate-health regulatory approval issues abroad.

Geographic areas served: All states in the U. S. , U. S. territories, as well as 54 countries

Programs: Personalized Cancer Care Navigation ProgramsResearch Advocacy ProgramsPatient Access and Public Policy Advocacy Programs Health Equity Programs in the U. S. and AbroadHealth Care Information Technology InitiativesSpeakers' Bureau and Patient Training ProgramsLinda Jenckes Health Care Public Policy ProgramClinical Trials Enrollment and Retention Tracking ProgramExon 20 Group--for 25 solid tumors/blood cancers where an EGFR exon 20 insertion mutation or a HER2 / ERBB2 insertion mutation is the driver mutationPD-L1 Amplified Patients (as identified on next-generation sequencing)Named Programs (named by grateful patients or their families)