Thursday, October 31, 2019

Stage 4 Needs More: A Granddaughter's Continued Journey into Breast Cancer Advocacy – Part 4

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association

Editor’s Note: This post is the fourth installment in a five-part series about the author’s personal perspective on metastatic (stage 4) breast cancer, and her return visit to Washington D.C., in October (Breast Cancer Awareness Month), to advocate for research funding and increased awareness of the disease. In this installment, the author chronicles her first congressional meetings on Capitol Hill as part of METAvivor’s “Stage IV Stampede.”  This series is a follow-up to the author’s 2018 five-part series, “Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer,” about how the loss of a loved one motivated her to travel to our nation’s capital to speak out against metastatic breast cancer. Part 3 chronicled the Washington, D.C. march, the community “Die-in,” and meeting her Texas advocacy teammates. 

It was barely noon on Friday, Oct.11, and already it was an eventful day. I’d joined more than 200 people for METAvivor’s “Stage IV Stampede,” a march to Capitol Hill calling for a cure for metastatic, or stage 4 breast cancer (MBC). We then paid our respects to the 114 men and women who die daily of this disease, with a silent vigil on the Capitol lawn. When I met the three other Texas advocacy team volunteers who also would lobby lawmakers on Capitol Hill for support, I realized I was the only one with experience doing so… which intimidated me a bit.

Team Texas Takes on Congress

The METAvivor Texas team – Jennifer, Anne, and Sharon, and I – had an hour before our first meeting in U.S. Sen. Ted Cruz’s office. The three of them wanted to sit down and map out what each of us would say. They admitted they felt a bit overwhelmed with all of the talking points METAvivor leaders advised us to cover with congressional staff.

They all looked at me. 

“You’ve done this before, what do we need to focus on?” Jennifer, an MBC patient and mother of two from Round Rock, asked me. 

I took a moment to consider the most important objective in today’s congressional meetings.

“Your story,” I said. “The congressional staff we meet with today want to know about how this disease has affected you personally. All of the information about the proposed bills and funding is in their folders we give them.”

“That’s good to know. Okay, I can do that,” Jennifer said. 

“Me too,” Sharon, an MBC patient from Houston, agreed. 

I did want to talk about my grandma whose death from MBC last year inspired me to be here, but since I had been to these meetings before, I wanted to give Sharon, Jennifer, and Anne (Jennifer’s aunt) a chance to talk about their personal experiences. Instead, I would list the bills we want lawmakers to support. If there was time to talk about my grandma, I would speak up. 

I checked the time. It was noon. Our first meeting would start in 15 minutes. 

“Don’t be nervous, y’all are going to do great,” I told them as we headed out.

Two Join the Crew

When the four of us arrived in Senator Ted Cruz’s office, we met two other women sitting in the lobby, who we learned were part of our group.

Denise was a patient-advocate as I am, who used to work with Valerie, the woman next to her. Valerie appeared to be my age.

 “This is my first Stampede,” Valerie said, “but I have experience lobbying here on The Hill, so I can definitely help talk about the bills in our folder.”

Hearing that made me smile. Team Texas would do great.

We met with Samara Brown, Senator Cruz’s legislative aide for health. The group picked me to begin the conversation. I talked about METAvivor, its mission, and how MBC is often overlooked in breast cancer awareness discussions.

Then Jennifer and Sharon, the two MBC survivors in our group, shared their stories. They seemed a bit nervous at first, but found their stride. (Who wouldn’t be?! We were in a congressional office, asking a federal lawmaker’s representative for help in fighting this disease!)

The other three patient-advocates – Valerie, Denise, and Anne – filled in on the rest. Samara actively listened and said she would fill the senator in on why we want him to co-sponsor two Senate bills, the Metastatic Breast Cancer Awareness Act and Cancer Drug Parity Act, among other objectives.

We left Senator Cruz’s office more confident. All of the knowledge and experience I got last year was coming back to help me.

(L to R): Jennifer, Denise, Sharon, Olivia, Samara, Valerie, and Anne meet in U.S. Sen. Ted Cruz's office to discuss MBC initiatives. Photo by Olivia Suarez
Next we headed to U.S. Sen. John Cornyn’s office to see Patrick Michaels, his health legislative aide. I felt good going into this next meeting because I met with Patrick last year to discuss these same issues. I remember he was receptive of our cause. Hopefully this year we would get the same response from him.

“Alright y’all,” I said to the team. “I feel good about this next meeting. We’ve got this.”

Watch for the final part of Olivia’s story, “Voicing Our Truth” on MeAndMyDoctor.com.

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