Why I am an Advocate: Julie Taylor

Like most people, my family has been touched by cancer.

I lost an uncle to colon cancer and have an aunt currently being treated for colon cancer. I've been involved in cancer advocacy for over fifteen years working for the American Society of Clinical Oncology, most of that time as a full-time employee in the Cancer Policy and Clinical Affairs Department, and more recently as a part-time consultant. I've had the opportunity to advocate on many issues - research funding, access to clinical trials, palliative and end-of-life care. One of the most rewarding aspects of my job has been the chance to work with patient advocates.

I had the privilege to be involved in the formation of the Alliance for Childhood Cancer, established in 2001, which is an informal coalition that provides a forum for national patient advocacy groups, professional medical societies and scientific organizations to meet regularly, share ideas and concerns, and work together to improve public education, as well as advance research and policies to improve cancer prevention, diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer. The Alliance currently has more than 20 member organizations, including the Children's Cause for Cancer Advocacy, which was one of the coalition's founding members. Working with these advocates has been an incredibly meaningful experience for me and we've accomplished a great deal. The Alliance has hosted several congressional briefings to educate Members of Congress and their staff about issues important to the childhood cancer community, including principles of quality care and survivorship. We've provided input on legislation dealing with pediatric cancer research, palliative care and survivorship.

When asked to write this piece, my first thought was "why me?" I certainly didn't feel "qualified" when you consider all the wonderful, dedicated people out there working on childhood cancer issues. But advocates come in all forms. While I have spent a great deal of time directly advocating on issues that matter to pediatric cancer patients and their families, I think my most valuable contributions have been as a facilitator - helping empower those on the front lines, helping them find their voice and convey their messages to decision makers.

Policymaking is complex. And you've probably heard the saying that it's a lot like making sausage - it's messy and there are lots of ingredients. I see my role as helping childhood cancer advocates wade through the complexities of policymaking to hopefully achieve what's most important - consensus around laws and policies that support research, improve treatment and enhance the quality of life for all those affected by childhood cancers.

Why am I an advocate? Just as in my personal life, I want my professional life to have meaning. It's through my work on behalf of the Alliance for Childhood Cancer and working directly with patients, survivors, families and caregivers that I find such meaning. And I hope I'm making a small difference.

Julie handles cancer policy and program development for ASCO and The Wellness Community.