Improving the Cancer Care Experience for Rare Cancer Survivors

Award Year: 2006	Investigator: Amy Dockser Marcus	Budget: $283,242	Categories: Cancer
Abstract: Recent statistics confirm that fewer Americans are dying of cancer. Yet major advances in diagnosing and treating cancer have not helped a large and growing number of patients those with rare cancers. Although the numbers of people with specific types of rare cancer are small, when added together, they constitute a significant proportion of all newly diagnosed cancer cases in the U.S. Amy Dockser Marcus, a Wall Street Journal reporter affiliated with the Columbia University School of Journalism, examines a range of possible barriers that have limited high-quality care for patients with rare cancers: gaps in scientific knowledge; insufficient transfer of advanced technology; limited availability of clinical trials; the need for more targeted advocacy efforts; and lack of interest by researchers, pharmaceutical companies, government, and private funding sources. Through a series of interviews and case studies of successes around other rare diseases, Marcus' project, Improving the Cancer Experience for Rare Cancer Survivors, identifies options for bringing the right mix of resources and stakeholders together to improve medical care and outcomes for patients with rare cancers.