Change it Back
SheKnows: What prompted you to form the Adolescent & Young Adult (AYA) advocacy group, Change It Back? What do you hope to achieve?
Glenn Rockowitz: All of my cancers have happened while I was in that “demographic,” the 15 to 39-year-old range. They’re a unique group because they are caught in this strange no-man’s land between pediatric and adult oncology. They fall through the cracks because there are no solid standards of care for AYAs. … About 70,000 new cases are diagnosed each year for us, yet there has been no improvement in survival rates since 1975. This is unacceptable to me. So I’m in the process of creating an organization, Change It Back, which will help improve the quality of cancer care for young people across the country. It’s ambitious, but I’m determined to do it.
SheKnows: What are the specific needs of people in this demographic and how can you identify with them?
Glenn Rockowitz: They are the largest group of uninsured patients in the country. They need to be educated about the effects of cancer therapies on their bodies with regard to fertility issues. So many of them are in the prime of their lives and they deserve every opportunity to start families like everyone else. It’s a complex time of life and the emotional needs are unique, follow-up emotional support is essential and I think young people are often overlooked. At the end of the day, I was diagnosed so late because so many doctors looked at me and how young I was and just assumed I was too young to be seriously ill. It almost cost me my life.
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