Cancer Survivors Become Advocates on Capitol Hill

December 4, 2019 by

As 2019 draws to a close, the American Association for Cancer Research (AACR) is grateful for our growing ranks of cancer patients and survivors who join us in advocating for strong federal funding for medical research. This year, Tomma Hargraves and Nicole Robinson joined us on Capitol Hill for the Rally for Medical Research, an annual gathering in which more than 350 national organizations ask lawmakers to make continued funding for the National Institutes of Health a priority.

Hargraves was featured in the AACR Cancer Progress Report 2019 and Robinson is an alumna of the AACR Scientist↔Survivor Program. They graciously shared their experiences with Cancer Research Catalyst.

Guest post by Tomma Hargraves
Non-small cell lung cancer survivor
Patient navigator, UNC Lineberger Comprehensive Cancer Center
Raleigh, North Carolina

There was a time when I couldn’t have imagined myself as an advocate for medical research.

But cancer has changed many things about my life. I’ve now gone to Washington, D.C., twice to share the message that funding for medical research is crucial as we search for ways to prevent, treat, and ultimately cure cancer.

I was diagnosed with stage 3B non-small cell lung cancer in 2006. I sought opinions from several local cancer centers before deciding to participate in a clinical trial at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center. Through my trial, I received high doses of chemotherapy, then a higher than normal dose of radiation combined with lower doses of chemotherapy. In the final stage of my treatment, I received a new targeted therapy called erlotinib (Tarceva). The treatment was successful: In nine months, I was declared cancer-free.

I had a recurrence a few years later, but today, I am in good health and have turned my attention to helping others. I am a patient navigator at UNC Lineberger, and I have made my first forays into patient advocacy.

Hargraves, center, and fellow advocates outside the office of U.S. Rep. George Holding (R-North Carolina).

This past summer, I joined a team of advocates and current patients with lung cancer. We visited Capitol Hill to ask specifically for two things: restored funding for lung cancer research via the Department of Defense budget, and support for a House and Senate bill which supports research into why more women are now getting lung cancer.

Then, in September, I shared my cancer journey with the AACR. First, I was profiled in the AACR’s Cancer Progress Report. The day after the report was released, I joined AACR staffers and fellow advocates at the Rally for Medical Research.

The Rally brings together researchers and patient advocates from a wide range of organizations to call on members of Congress and ask them to fight for robust funding for medical research. My group met with U.S. Rep. David Price (D, North Carolina). I had met Rep. Price before and shared information about lung cancer. At the Rally, he kindly spoke with me individually. We also met with several legislative assistants to other North Carolina members of Congress. I was impressed with several of the legislative assistants; they appeared to have done their homework.

My Rally group happened to be comprised mostly of researchers, not patients or advocates. After spending a day with them on Capitol Hill, I learned that researchers are highly dependent on the National Institutes of Health for funding in order to continue their research. Their work can be significantly impacted when budgets are cut or not passed in a timely fashion.

The cancer research community has made tremendous progress against lung cancer since I was diagnosed almost 13 years ago. The new treatments that we have, which were made possible by cancer research, are giving more and more patients the chance to survive like I did. I was happy to join the AACR in sharing this message on Capitol Hill.

Guest post by Nicole Robinson, EdD
Metastatic breast cancer patient and advocate
Founder, Hatz 4 Hearts Foundation
Los Angeles

“If cancer doesn’t take a break, neither will I.”

For many cancer patients, our lives hang in the balance while researchers search for a cure. As a stage IV metastatic breast cancer patient and advocate, I am all too familiar with the fear of the unknown. There is no cure for metastatic breast cancer, and it really doesn’t take a break.

But I won’t, either.

In September, I was blessed with the opportunity to join with other advocates at the Rally for Medical Research. I was humbled and honored to join the AACR and to speak in unity with others about the need for change. This special assignment allowed me to convey to policymakers, their staff, and others in Washington, D.C., that medical research is a must.

During our first day on Capitol Hill, our team gathered together before meeting with staff members from the office of U.S. Sen. Kamala Harris (D-California). We excitedly crammed in a small conference room, eager to garner her support for NIH funding. As our sense of urgency grew, my heartbeat raced in anticipation.

Admittedly, I was nervous, but I soon became amazed by my fellow advocates and their laser focus on increased medical funding. We all conveyed our key messages, and I personally shared my truth—that I, along with many others, deserve to live!

Robinson, center, meets with U.S. Rep. Salud Carbajal (D-California) along with other California advocates during the Rally for Medical Research. Dr. Kathye Jenkins, also an alumna of the AACR Scientist↔Survivor Program, is on the left.

We had a productive meeting, and the winning prize was hearing the words, “you have our support.” When I think about it now, I feel like we are true champions; all down for the cause and destined to win on Capitol Hill.

I was so proud to sit with policymakers to lend my voice and share my journey. I will forever cherish my Hill Day experience, which was fueled by the words of a famous quote by Mahatma Gandhi: “Be the change you wish to see in the world.”

I am forever grateful to the AACR. I experienced so many life-changing moments and heard from phenomenal speakers who shared their heartfelt, inspiring stories of why they rally in support of medical research.

When it was all over, I felt as though I had been a part of a movement, something far more significant than I expected. The entire Hill Day experience gave me greater hope for continued funding for advancements in medical research. There must indeed be a continuous effort in supporting researchers in finding a cure for cancer and other chronic diseases. As an overcomer, my purpose is renewed. My mission is clear, echoed through voices of unity who stand in the fight.

Thank you, AACR, for leading the charge, and for bringing together advocates from near and far to speak with one voice and one message to “Rally for Medical Research.”