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By Stacia Wagner
Tuesday, November 1, 2011

Young adults are the most underinsured age group in the United Sates. The 2006 National Cancer Institute and LiveStrong Young Adult Alliance study stated that access to cancer care for the young adult community was restricted because of how many 19 to 29 year olds are uninsured. For brain tumor survivors this extends to follow-up care including much need medical late effects follow-up, occupational and physical therapies. As far as dealing with the emotional effects of the diagnosis and treatment, coverage for therapy is extremely rare. The lack of coverage may occur because of pre-existing conditions, aging off their parents insurance or lack of employment.

As of September 23, 2010, children under 19 can no longer be denied health insurance coverage based on a pre-existing condition. Additionally, children and young adults may remain covered under their parent’s plan until they reach the age of 26 (unless they’re eligible for their own employer-sponsored health insurance through their jobs).

As a group of young adults gathered to help stuff bags for the CBTF Big Apple Circus the other day, one young man said “Has anyone else had the problem of picking between working and having insurance?” Everyone agreed this should not be a decision which young adults have to make. While this is not true just in the brain tumor survivor community, brain tumor survivors face a higher unemployment rate than any other childhood cancer survivors and are very often underemployed. Without work, many brain tumor survivors will go without insurance. While some of them are on disability, the current system traps them into staying on disability to have insurance. This directly impacts their quality of life and opportunities for independence.

CBTF is in the process of developing an employment program with Dr. David Strauser at University of Illinois Champagne-Urbana, and Dr. Brad Zebrack of University of Michigan. Further details about the program will be released later this month. For now we would like to hear about your insurance concerns, successes and challenges.

Insurance and employment resources:

Patient Advocate Foundation

Cancer and Careers

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