August Advocate Spotlight: Rob Tufel

August 12, 2021

 

Tell us a little bit about yourself and how you got connected with the Cancer Support Community.

I have worked in oncology for over 25 years, since I started working at the National Brain Tumor Foundation in 1995. I have known about CSC for many years, even before it was called Cancer Support Community and was known as the Wellness Community. (Editor’s note: The Wellness Community and Gilda’s Club Worldwide merged in 2009 to form CSC.) I even had a chance to meet the Wellness Community’s founder, Harold Benjamin, when we invited him to be a speaker at a National Brain Tumor Foundation conference.

Rob Tufel smiles off into the distance.

"Passion, persistence, patience, and knowledge are keys to being an effective advocate."

How are you involved in cancer advocacy?

My involvement in advocacy started with my work in the LGBTQ community around AIDS issues. I campaigned against the infamous LaRouche initiative in California, which would have allowed the state to bar people with HIV from holding jobs and quarantine them. Since then, I’ve worked on initiatives to have benign brain tumors included in the National Program of Cancer Registries (NPCR), put warnings on tanning salon equipment, and found the Cancer Survivorship Coalition of Silicon Valley (now the Bay Area). The coalition advocates for the needs of cancer survivors and raises awareness about cancer survivorship as a public health issue impacting multiple groups. More recently, I have been involved in advocating for the Cancer Care Planning and Communications Act (H.R. 3835). [This bill] would improve doctor-patient communication by enabling doctors to bill Medicare for the time they spend developing comprehensive cancer care plans.

"As more people survive their cancer, and as we see a significant increase in the older adult population, our health care system is just not prepared to meet the needs of this population."

Is there one issue you are particularly passionate about?

Cancer survivorship and aging. As more people survive their cancer, and as we see a significant increase in the older adult population, our health care system is just not prepared to meet the needs of this population. It has been 15 years since the Institute of Medicine released the report “From Cancer Patient to Cancer Survivor: Lost in Transition.” We know that there are still so many cancer survivors who are not getting the supportive care they need to have a good quality of life. We know this will continue to be an issue and need to prepare now to prevent a crisis. The pandemic has clearly demonstrated what happens when our health care system is unprepared.

"We know that there are still so many cancer survivors who are not getting the supportive care they need to have a good quality of life."

What is one tip or piece of advice you’d like to share with others who are interested in becoming an advocate?

Passion, persistence, patience, and knowledge are keys to being an effective advocate.

Tell us something fun about yourself — any hobbies, interests, or fun facts?

I am an avid reader and have been in the same book group for over 20 years. I also love languages and speak Hebrew, Spanish, and a little Italian and French. I am constantly trying to improve my Spanish and love watching telenovelas.