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Sep. 28, 2021

TOPIC: Featured News, Medical, Head of the Herd, Voices of Rare Cancer

Head of the Herd: David Arons, National Brain Tumor Society

Posted by Maia Craig

David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare disease space.

1. How did you get started in the rare disease community?

I was motivated by my father who died of advanced metastatic melanoma when I was a teenager. I always wanted to make a difference in cancer since it’s very personal. The NBTS encompasses a collection of rare diseases that make up a bigger family of brain tumors. About 700,000 people are living with a primary brain tumor and a few hundred thousand more are living with metastatic cancer. I found my way to NBTS as a personal mission, as being in rare disease and cancer is a very compelling way to help people.

2. How has your experience as an attorney representing patients led you to leading the National Brain Tumor Society today?

I am an attorney with experience in public policy and nonprofit management. All the work I have done goes back to creating change for people facing life-threatening diseases, disorders, and conditions. When I saw the opportunity to join NBTS, it was based on prior experiences of helping people in different ways personally and professionally. It’s important to help and advocate for people living with brain tumors as they deserve to have a voice, and be represented.

3. How does the National Brain Tumor Society set itself apart from other related organizations?

NBTS is clear about what we are trying to do to cure brain tumors, reduce the burden of brain tumors, help individuals and families, and help the field of neurooncology. Sometimes there are differences or similarities between us and other organizations, but we try to communicate with other organizations to avoid overlap and duplication. We are passionate about honoring every donor’s dollar and making each dollar uniquely impactful. We constantly strive to deliver our mission effectively, by making sure it is on point, evidence-based, grounded in space, and keeps patients first.

4. How does the National Brain Tumor Society include diversity and health equity principles in its drug development and research initiatives?

First, we must recognize how inequities influence the whole system. Understanding the reasons for health disparities and knowing where those exist is important. We are working towards carrying out our mission in a way that is inclusive and improves equity. With all that in mind, we address how to leverage diversity and be more inclusive in our own organization internally. Externally, we focus on our fundraising and advocacy efforts. Over the last two years, we helped pass public policy that would help Medicaid-enrolled patients in clinical trials have access to coverage, since Medicaid typically leaves that coverage out and it can discriminate against low-income populations. We joined other cancer and health organizations to pass the Clinical Treatment Act (H.R.913) that became law last year. We want the community to know that NBTS is open to everyone, and that we want to help everyone regardless of any demographic. Brain tumors do not discriminate.

5. How do you remain hopeful that rare disease/cancer/brain tumor research and funding can continue to save lives?

We remain hopeful because we have looked at the track record for the last 10 years. For example, metastatic melanoma used to have very few treatment options. In the middle of the decade, the discovery was made about immuno-therapies, and we see strong survival rates as a result. We see advances across rare diseases thanks to genomics, including breaking diseases into smaller and smaller sub-diseases characterized by genetic subtype to match the right drug to the right patient at the right time. Determination, persistence, compassion, and drive to be inclusive to the people living with rare diseases must all be present. We have tried to implement these elements in our new Venture Philanthropy Fund, which injects seed capital into biotechs to incentivize them to enter the brain tumor space and partner with great medical institutions. This is a very giving society, and our cause and purpose truly make a difference in the brain tumor community.

6. In what ways does the National Brain Tumor Society highlight and amplify the patient voice in its own and unique way?

It is very important to amplify the patient’s voice, and through this we can create change. NBTS offers opportunities for the community to directly participate in advocacy and affect change. An example is the annual Head to the Hill advocacy day, which brings over 300 patients and caregivers to Capitol Hill (during the pandemic, hundreds more joined virtually) to help communicate with Congress about our public policy agenda. NBTS holds events across the country to bring between 60-100,000 people together to walk or ride together as one brain tumor community. It is also important that we help people come together and talk about their experiences. Once a month we host a large online support group which is free and has no agenda – you just come, show up, and you can bring up any topic you would like in a safe space. Speaking up and connecting with others is powerful and there are many ways to be heard through NBTS.

7. Is there a specific project or initiative in the past few years that you are particularly passionate about?

Our work over the past five years through our public policy program has resulted in 100 million more dollars coming into brain tumor research than past funding. As our advocacy program has grown, millions more have joined due to the intense focused pressure we have put on Congress and the Executive Branch to both raise the level of funding and do more with that funding. We’re proud of this accomplishment. The federal government is the largest source of brain tumor research, so that is where our policy efforts are directed. In addition to policy, we are passionate about our philanthropic programs such as Defeat GBM, Defeat Pediatric Brain Tumors, our Venture philanthropy fund, and more.

8. What’s the last book you read?

It was a gift from a friend: The Splendid and The Vile by Erik Larson. It is about Winston Churchill, the prime minister of England during some of the toughest battles of World War Two. I enjoy biographies and this felt appropriate to read in the past year as we have been under unique organizational and societal stresses with the pandemic, social unrest and injustice, and the election.

David most frequently checks his Twitter account: @dfarons

Interview by Alexandra Folleco, NORD’s 2021 summer intern for the Membership department.