An interview with Dr. Leonard Sender
Can you tell us a little about yourself and your personal motivation?
Dr. Sender: I am an Adolescent and Young Adult Cancer specialist. I work at the Children's Hospital of Orange County, California and at the University of California Irvine. Also, I direct the Adolescent and Young Adult Cancer Program in both institutions and I am passionately concerned about the well-being of adolescent young adult cancer patients. What has driven me in the last 15 years is the lack of infrastructure available nationwide to address the needs of this patient population. Unfortunately, when we look at the data in many of the cancers that this group develops, there has been a lack of progress in understanding the cause of their cancer or how to treat them. As a result, the outcomes are worse than can be expected in older adults or very young children under the age of 15.
What do you hope for SeventyK?
Dr. Sender: The SeventyK project is sponsored by me personally, so that our Bill of Rights can be seen as neutral. Therefore, we invite every hospital, every institution, every organization, and every person to join us in signing up to support this bill. We hope that we are able to get as many signatories as possible in support of the bill and therefore through the numbers game we will be able to effect change.
Why SeventyK, what does it represent?
Dr. Sender: SeventyK represents approximately 70,000 children, adolescent and young adult patients in this country who are diagnosed with cancer every year. The adolescent and young adult patient population is also known as the AYA population. As you probably know, there are 1.4 million Americans who are diagnosed with cancer on a yearly basis. 70,000 represents the group of patients who are under the age of 40 and who we now know have poorer outcomes and are given much less attention.
Why is SeventyK important?
Dr. Sender: The goal of the SeventyK campaign is to raise awareness to the lack of rights that these patients have in the organized medical world. There is a Patients' Bill of Rights in every hospital that is given to all patients when they are admitted. However, when you review the Bill of Rights of most institutions in the country, you will find that the Bill of Rights does not reflect the needs of this AYA patient population specifically.
We do know from research that has been done and published by Dr. Archie Bleyer and other professionals, as well as through work done at our own university and children's hospital, that this group of patients do not get the type of care that they should get in terms of access to experienced and educated practitioners in the field of adolescent and young adult cancer. They do not get access to clinical trials when there is a paucity of clinical trials available. There are very few biobank opportunities to store material in order for research to be done to try and understand the etiology of their cancer. There is very little work done involving the epidemiology or the study of the cause of their cancer. We also know that we have not paid attention to the fertility issues related to being a young adult cancer patient and survivor.
What are the goals of SeventyK, what do you hope to accomplish?
Dr. Sender: The SeventyK campaign allows people to review the Bill of Rights and then digitally sign in support. The campaign is designed to raise awareness of the plight of the AYA population. Our goal is to have the Bill of Rights implemented at all hospitals, so that in the future when a young patient is admitted, this Bill of Rights is the standard for any young adult cancer patient.
We also have a goal of taking this petition forward within the political process and within the realms of health policy. We are in an exciting political election year and I believe that our potential elected officials need to address the issues that this SeventyK AYA Bill of Rights brings forth. Finally, we hope that the SeventyK campaign is more than just a Bill of Rights but a platform to advocate for adolescent and young adult cancer issues.
People Behind the Push
Dr Leonard Sender
Leonard S. Sender, M.D. received his medical education in South Africa at the University of Witwatersrand in Johannesburg and completed his pediatrics internship and residency at the University of California, Irvine (UC Irvine) Medical Center in Orange. His pediatrics hematology/oncology subspecialty training included the Children’s Hospital of Los Angeles (CHLA). Dr. Sender is board certified both in Pediatrics and Pediatric Hematology/Oncology. His professional interests are strongly centered on the diagnosis, treatment, and epidemiology of adolescent and young adult cancers (patients between the ages of 15 and 29). Dr. Sender is currently Medical Director of the Cancer Institute at Children’s Hospital of Orange County (CHOC); Pediatric Subspecialty Faculty (PSF) Division Chief of Oncology; and Medical Director of Clinical Oncology Services at the UC Irvine Medical Center’s Chao Family Comprehensive Cancer Center.
Sarah Sharaf
Sarah Sharaf received her Bachelor’s degree in Public Health, from the University of California, Berkeley. Her love for public health and medicine has allowed her to contribute to the Adolescent and Young Adult Cancer Program developed and organized by Dr. Leonard Sender. She is taking part in the Breast Cancer Initiative, dedicated to greater awareness, research and advocacy for women under the age of 40 with breast cancer. Sarah is also currently a research assistant under Dr. Sender’s research study, the Kids, Adolescent, and Young Adult Cancer (KAYAC) Program, committed to improving the health and well-being of all young people diagnosed with cancer by further understanding its clinical, biological, and health care aspects. She also is Vice Chair of the I'm Too Young For This! Cancer Foundation’s Young Adult Leadership Council. Sarah loves her work as she is always inspired and motivated by her fellow AYA advocates hoping to eventually effect change in the understanding of AYA cancer.
Ali Ansary
Ali Ansary is a future physician and proud advocate of adolescent and young adult (AYA) cancer survivorship advocacy and awareness. As he works closely with many AYA survivors and continues various research studies on the AYA population as a research assistant to Dr. Leonard Sender. Ali is a part of a larger group of members who are currently helping shed light on a group that has fallen through the cracks of medicine. He is committed to improving quality of care for cancer survivors and more generally, increasing access to quality comprehensive health care for all underserved populations. Ali holds a Bachelor's degree from the University of California, Berkeley and is the Director of the National Melanoma Awareness Project. Ali is also the Chair for the I'm Too Young For This! Cancer Foundation’s Young Adult Leadership Council. His motivation and passion are rooted through the strength, creativity and passion of every young survivor he meets.
Ryan Panchadsaram
Ryan is based out of San Francisco and strongly believes that the web is the perfect medium for activism and change. He built the SeventyK website and is finding ways to get the group's voice heard using the latest web technologies.
Mia Nolting
Mia is a student and illustrator living in Portland, Oregon and is in the stages of a project about cancer in young adults. Her plan is to produce a book of drawings, as part of her senior thesis but extending beyond it, about the issues specific to young adults undergoing cancer treatment. The goal is to bring a general awareness to the issue, demystify cancer and its treatment, and to provide a resource for young adults facing cancer themselves.
Special Thanks
Dr. Archie Blyer, Matthew Zachary, Keri Zabokrtsky, Edmond Rivera, Courtney Bugler, Sydney Bays, Camille Smith, Aaron Spicer, Leah Shearer, Eric Galvez, Amanda Shaffer, and the rest of the leader's in our communities that have been affected by cancer. Also, to all of Dr. Sender's patients over the years that have contributed to the discussion and need of an AYA Cancer Bill of Rights. Finally, to all of the patients, survivors, and advocates that have contributed to the progress of adolescent and young adult cancer issues.