Improving survival rates for adolescents and young adults (AYAs) with cancer
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.
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.
Originally posted in March 2010.
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