Science is Beautiful Blog

Adolescent and Young Adult Oncology – Stuck in the Middle Again

Posted by Michele Beyer

Apr 17, 2012 2:26:00 PM

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The National Comprehensive Cancer Network (NCCN) has launched the first-ever Clinical Practice Guidelines in Oncology for Adolescent and Young Adult (AYA) Oncology (http://www.nccn.org/professionals/physician_gls/pdf/aya.pdf).  AYA patients are defined in the guidelines as individuals 15 to 39 years of age at initial cancer diagnosis. The experts at NCCN point to the fact that American Cancer Society statistics shows marked advances in cancer care in people under 15 and over 40, “…but there has been minimal improvement in the survival rate in the 70,000 new AYA patients with invasive cancer diagnosed yearly.”

Having spent nearly 20 years in and around the cancer community, I strongly agree that more needs to be done for this group.  The Children’s Oncology Group (COG) reports that nearly 90% of children under the age of 15 participate in oncology clinical trials.

Conversely only 10% of those 15-19 yrs of age and 1% - 2% of those between 20-39 yrs of age enroll in clinical trials.

I have great admiration for pioneers who have done a great deal of work in this area.  Particularly, Selma Schimmel (http://www.vitaloptions.org/about.htm), who, in 1983 founded Vital Options International, a group focused on meeting the needs of people diagnosed with cancer between the ages of 17 – 40 yrs of age.  Selma was diagnosed with breast cancer at age 28 and remains today a driving force for advocacy, education and support of all cancer patients -- especially young people with cancer (http://thegrouproom.tv/).

I am also old enough to remember, and privileged to have been in the room (perhaps I’ll cover that in later blog posts), when Lance Armstrong (at age 26), founded the Lance Armstrong Foundation in 1997 (www.livestrong.org) (BTW – in the old days it started at LAF.org).  Other young pioneers include Doug Ulmann (http://www.ulmanfund.org/), Scott Hamilton (www.chemocare.com) and Matt Zachary (www.stupidcancer.org).

JFK Communications recently attended the 5th annual Stupid Cancer national conference in Las Vegas, March 30-April 1.  The summit, dubbed OMG 2012 Cancer Summit (http://omgsummit.org/2012/), provided more than 500 young cancer survivors a venue to meet, learn and support each other.  JFK was there on behalf of Prometheus Laboratories (www.proleukin.com) to raise awareness of metastatic renal cell cancer and metastatic melanoma.

We hope these new guidelines will advance the care, support and survival of AYA patients worldwide.

Topics: events, cancer, young adult, guidelines, NCCN, Advocacy

 

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