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The Cost Of Living: Cancer's Dirty Little Secret

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Cancer's Dirty Little Secret
For Survivors Under 40, Nothing's Changed

By Matthew Zachary

There's a dirty little secret in cancer. The past 30 years of research have yielded amazing strides. On the whole, according to the National Cancer Institute (NCI), remission rates have increased significantly and survivorship rates are at an all time high.

Great news, right? Sure... if you're 65. Or 9. You see, cancer survival in young adults, aged 15-39, shows little progress across the past 30 years, according to reports from the NCI ("Closing The Gap", Fall 2006), The New England Journal of Medicine ("Chronic Health Conditions in Adult Survivors of Childhood Cancer", 10/06) and the journal Science ("In Their Prime and Dying of Cancer", 08/07).

Allow me to reinforce it this way:  When I was diagnosed with brain cancer 12 years ago while a College senior, I was given 50% chance to live for five years. You'd figure that, 12 years later, with all of the progress we've made, should I or anyone else get that same brain cancer today, that 50% would be a lot higher.

It isn't – and the same would be true if I had leukemia, colon cancer, breast cancer, osteosarcoma or any other cancer. Bottom line – if you are diagnosed between 15 and 39 today, just pretend it's 1977 when disco was king and the average 5-year remission was 50%.

Yes, cancer's dirty little secret isn't just that we're treating the symptoms and not the cause, or that no one really knows where the billions we donate to charity actually goes, but that the young adult community has been left out, cast aside and fallen through the cracks by the machine that is the cancer healthcare continuum.

The following are solid NCI figures… Out of the 1.3 million cancer diagnosis each year, less than 80,000 occur in pediatrics, adolescence and young adulthood, representing ~6% of all incidence.
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On top of this, it's important to note that, while there are approximately 9,500 new cases of pediatric cancer annually, there are close to 70,000 cases of young adult cancer annually.

Now, what's really going to bake your noodle is that, while 94% of all cancer incidence occurs over age of 40, 1 in 10 survivors is actually under age 40. That's over one million young adult survivors in the US alone. But wait - there's more. Out of these one million, roughly one third are long-term survivors of pediatric cancer, rather than having been diagnosed in their 20s or 30s.
This is generational cancer disparity at it's most powerful.

The part that is most surprising is that Gen X (born between 1964 and 1979) and Gen Y (1979-present) have demonstrated remarkable consumer behavioral trends when it comes to mobilizing and organizing, albeit sometimes involving issues such as voting on a reality show instead of in an actual national election.

However, these 124 million Americans (Brookings Institute) are the ones who brought us Google, FaceBook, YouTube, Flickr, and Second Life. Yet again, they're the same ones who turned a video of a dramatic prairie dog (http://youtube.com/watch?v=jHjFxJVeCQs) into a global viral phenomenon. (It was a hysterical little clip.)

Did you know that a 2006 youth culture consumer market research report by The Intelligence Group indicated that young adults list cancer as their number one public health issue.
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So where is everyone? Why isn't there a Gen X/Y revolution in the streets, across social networks or spreading virally on the tubes of the Interweb? Or are they all focusing their efforts in the wrong places? (and I don't mean World of Warcraft.)

Consider this my fellow Gen X/Y'ers: It is this writer's belief that the young adult cancer problem is only going to be solved by and within the young adult community.

By this, we need to recognize that the leadership of the big box cancer organizations, as well as a large percentage of cancer researchers are boomers and WWII generation folks who are out of touch. (Example: I had a recent conference call with a regional committee for a big box cancer group and they never heard of YouTube.) It is our job not only to motivate these people to change but develop our own "me generation" philanthropy model to solve our own problems with the same fervor we had for Sanjaya.

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Matthew Zachary was a 21-year old college senior and aspiring pianist/composer en route to film school when he slowly lost use of his left hand, was diagnosed with pediatric brain cancer (medulloblastona) and told he'd likely never perform again. Eleven years, four albums and scores of concerts later, Matthew's struggle to get busy living has inspired countless thousands. Today, Matthew is an award-winning musician and composer, accredited thought-leader in public health, a leading authority on the youth cancer culture, a highly credentialed and coveted motivational speaker, and a burgeoning social entrepreneur with the 2004 launch of Steps For Living, a nonprofit social advocacy venture benefiting adolescents and young adults with cancer that seeks to create lasting change in how the public relates to and engages with the disease. A native of New York City, Matthew holds an interdisciplinary BA from the State University of New York at Binghamton that combined the music, theater, computer science, and sociology disciplines.

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