This interview with David Arons was first published in the 2016/17 edition of Brain Tumour, the IBTA's annual magazine that is distributed globally and free of charge in 113 countries and at international neuro-oncology and cancer conferences around the world. Read the full issue online and find out more here.
David Arons has worked at the National Brain Tumor Society since 2011 and in July 2015 was appointed as its Chief Executive. A trial lawyer by training, David is also a seasoned patient advocate and author. Here, he shares some of his thoughts on his advocacy work with “Brain Tumour” readers.
IBTA: David, what inspired you to become active in the brain tumor community?
David Arons: The brain tumor community is a community of heroes that needs help amplifying their voices. I wanted to bring to the National Brain Tumor Society (NBTS) my background as an advocate to help and empower members of the brain tumor community to have a voice in the policy-making process and to pursue a cure together.
IBTA: Please briefly describe your role at the National Brain Tumor Society.
David: As Chief Executive Officer, I lead our extremely talented staff. My specific role is to advance NBTS’ strategy to defeat brain tumors by funding innovative research, advocating for public policy, convening stakeholders including industry, and empowering patients and caregivers. I am also responsible for making sure NBTS is a strong and accountable charitable organization that provides a memorable, positive experience for anyone collaborating with our organization.
IBTA: What other work were you involved with before you became active in the brain tumor community?
David: Previously I worked at the American Cancer Society, and prior to that, I worked as a trial attorney. I was also the co-founder and co-director of the Center for Lobbying in the Public Interest. I have been involved in non-profits for most of my career, and believe in the power of not-for-profit organizations to help and transform our society.
IBTA: You are the author of several books about patient advocacy. What three, short pieces of advice would you give to someone just starting out in the patient advocacy field?
David: I would say this:
a. Know that your voice counts. Whether you are advocating for changes to laws or advocating for improvements in research or patient care – it is important to speak up on behalf of the brain tumor community about ways to make constant improvements.
b. Be authentic. Bring stories and data that truly validate and illustrate the problems for which you advocate. Also present viable, feasible and sustainable solutions to those problems.
c. Be local and personal. People in power have hometowns, their own personal lives, and networks. Effective brain tumor advocacy aims to demonstrate how anyone is a stakeholder in the fight against brain tumors.
IBTA: What has been the most challenging part of your work at NBTS to date?
David: Trying to demonstrate the appropriate amount of patience with the research process, while at the same time, being “impatient” as a patient advocate who wants, and frankly expects, new and better treatments faster.
IBTA: What is the most rewarding/ satisfying aspect of your work at NBTS?
David: All the relationships that I have formed with so many terrific people around the world, and of course, the outstanding group of teammates at the National Brain Tumor Society.
IBTA: Briefly, what are your thoughts on how clinical trials should be changed to reflect the unique challenges that brain tumors present?
David: We are very interested in the concept of adaptive design for clinical trials that can evaluate combinations in multiple testing arms. This is why NBTS is supporting the GBM AGILE trial. We also
are leading an effort to improve clinical trial endpoints measured by imaging and clinical outcomes assessments. With the Jumpstarting Brain Tumor Drug Development Coalition’s imaging steering
committee, we have achieved a new global protocol for standardizing the acquisition of imaging data in brain tumor clinical trials.
IBTA: How do you cope with the pressures that exist with advocacy work?
David: Of course, there are pressures in every type of work. I choose to focus on the many wonderful relationships with people committed to the brain tumor community, and our many results and accomplishments toward better treatments. I also get so excited about the evolution of NBTS. Those elements truly help me overcome any potential or real pressures.
IBTA: How do you relax? Do you have a hobby or a sport with which you are involved?
David: I have three young children, so when I’m not working I’m spending time with them and enjoying being a dad. You can guess that I’m constantly in demand for my kids’ hobbies.
IBTA: What would be the first three items on your wish list for brain tumor patients and their families?
1. A cure
2. A health care system that really delivers excellent care to all patients regardless of where they live
3. That people know the National Brain Tumor Society is here for them.