Advocacy Opportunity: Participating in the American Association for Cancer Research Scientist Survivor Program

As a recurrent ovarian cancer thriver/survivor who is still undergoing chemotherapy after being originally diagnosed almost eight years ago,  I have volunteered in various forms of advocacy including: 

  • Several opportunities with the Ovarian Cancer Research Alliance as an Advocate Leader in 2014 and 2019, as a presenter with Survivors Teaching Students® program, and as a research advocate. 
  • I have also been a consumer reviewer with the Department of Defense CDMRP Ovarian Cancer Research Program
  • I am a member of the National Coalition for Cancer Survivorship Cancer Policy & Advocacy Team
  • I participated in the American Association for Cancer Research Scientist <-> Survivor Program in 2015 and was selected again this year as a survivor advocate which was a great opportunity for me to continue to learn about research advocacy. 

This year’s American Association for Cancer Research (AACR) annual conference was held in Atlanta with more than 22,000 researchers, scientists,  advocates, and attendees. It focused largely patient-targeted therapies including genome sequencing and immunotherapy as well as clinical trials. The conference spanned five days of presentations and workshops. 

A bit about the history of the AACR and the Scientist<->Survivor Program:

  • “The AACR was founded in 1907 by a group of 11 physicians and scientists interested in research, “to further the investigation and spread the knowledge of cancer.” Today, the AACR accelerates progress toward the prevention and cure of cancer by promoting research, education, communication, and collaboration.” – from the aacr.org website 
  • The Scientist<->Survivor Program began in 1999.  “Through our program, survivor and patient advocates are able to develop stronger backgrounds in cancer research and related issues; keep abreast of recent advances in drug development and basic, clinical and translational cancer research; and be exposed to the knowledge and dedication of cancer scientists.” – from accr.org website.

Some details from year’s conference:

One of the main goals of participating in the Scientist<->Survivor Program is being assigned to small working groups to work on a particular question as it relates to cancer, research, precision medicine, etc.  Within each group are cancer survivors, patient advocates, and each group has at least one scientist who is available to help make sense out of all of the science/research lingo that is prevalent when so many researchers are gathered in one place to share information. At the end of the conference, each working group puts together a presentation to share with all of the other working groups participating in the program.  This project takes a lot of time yet it is fun to work together to find the answers throughout the conference whether it is from presentations, panels, posters, and/or the amazing availability of all of the exhibitors who have a lot of information that they are willing to share. 

As a participant in the Scientist-Survivor Program, we are required to present a poster during one of the advocate poster sessions. We had the opportunity to speak to people who stopped by to look at our posters and ask questions. My poster was about the decision-making process that a patient goes through when choosing to go into a clinical trial or not. I have participated in four clinical trials over the years since my original diagnosis so this topic is very close to my heart. Some of the details included in the poster were how to find clinical trials, how to navigate the details, financial considerations, and how to potentially stay eligible for more clinical trials. I had lots of researchers interested in my poster because accrual for clinical trials can be a challenge.  I enjoyed speaking with them about their challenges as well as sharing the challenges that patients face when trying to decide to go into a clinical trial or how to qualify for a clinical trial.  

Unfortunately, precision medicine and targeted therapies are not an option for all cancer patients due to the complexities of cancer as well as the complexities of each patient’s response to therapies.  There is still much work to be done yet what I witnessed at this conference is that researchers are sharing more information and using opportunities to collaborate to make as much progress as possible so that people can live longer after being diagnosed with cancer. They are also very interested in the patient perspective and are including them when designing research opportunities.

What I enjoyed the most, though, was meeting other cancer survivors and advocates from all over the world.  Within my working group, multiple cancers were represented including ovarian, brain, pediatric, lung, and breast with survivors and advocates from all over the United States as well as Canada and Kenya.  There is amazing strength and compassion throughout the world when it comes to cancer, new research, and the people it affects.

 

AACR.org

AACR Scientist<->Survivor Program Info

 

Atlanta, GA – The AACR 2019 Annual Meeting – Attendees during SSP Closing Session & Celebration at the American Association for Cancer Research Annual Meeting here today, Tuesday April 2, 2019. More than 20,000 physicians, researchers, health care professionals, cancer survivors and patient advocates are expected to attend the meeting at the Georgia World Congress Center. The Annual Meeting highlights the latest findings in all major areas of cancer research from basic through clinical and epidemiological studies. Photo by © AACR/Phil McCarten 2019 Contact Info: todd@medmeetingimages.com Keywords: Attendees – SSP Closing Session & Celebration

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