Monday, October 29, 2018

Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer, Part 3

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association

Editor’s Note: This story is the third of five in a series about the author’s personal experience with metastatic (stage 4) breast cancer. This story in particular talks about the author’s decision to take on an advocate role by traveling to Washington, DC, shortly after her grandmother’s passing.

My grandma passed away on Aug. 4, 2018 after an 18-month battle with metastatic breast cancer (MBC). Metastasis is when the cancer spreads to other organs in the body, such as the liver, lungs, bones, and brain. 

Losing her motivated me to act.

Turning Grief into Action 

Two weeks after she passed, I received an email from METAvivor, a nonprofit whose goal is to raise further awareness about MBC and provide resources for men and women currently battling the disease. I had raised $1,000 for the nonprofit back in March. 

METAvivor’s email sought volunteers from across the country to travel to Washington, DC, on Oct. 8 and 9 to advocate for advancing medical research and improving access to quality health care for MBC patients. According to the nonprofit’s website, only about 2 to 5 percent of the funds raised for breast cancer research are spent on studies of metastasis, and the group sees a need to boost that.

People who would participate in the “stampede” would visit the offices of their respective senators and representatives to educate them about these issues. 

“Am I qualified to even do this?” I asked myself. I was still learning how to handle my grief. I also didn’t have any experience with politics and voicing my own opinion on an issue like health care. 

But the email said volunteers didn’t need to have a background in government to take part.

I stared at the laptop screen, wondering if I was crazy to travel halfway across the country and lobby on behalf of people battling stage 4 breast cancer. 

Well,” I thought. “If it’s meant to be, it will be.” 

Ms. Suárez Goes to Washington 

“This is so beautiful,” I thought, having decided to make the trip.

Olivia Suarez  in Washington,
The sun was setting on the National Mall. Ducks swam across the Lincoln Memorial Reflecting Pool. Several families posed for photos. Others rode bikes. 

I raced up the steps of the Lincoln Memorial. 

When I reached the top, I turned my head toward the Washington Monument. There, I caught the sky in a mixture of pink, blue, purple, and orange. No words or photos can describe just how breathtaking it was.

The Lincoln Memorial.
The next two days would be hectic with training and meetings, but I had never felt more ready.

Time for Training

It was GO day, Tuesday, Oct. 9: the first day of METAvivor’s “Stage IV Stampede.” 
I walked into the hotel to find dozens of men and women crowded around the registration area.
My heart raced with anticipation as I took my seat. 

A man named Michael, who I later learned was one of METAvivor’s board members, approached the podium. 

“Welcome everyone to this year’s Stage IV Stampede,” he said. “We’re so glad you’ve traveled to DC to join us.”

The crowd of dozens of people burst into applause. 

Dane Christiansen, executive vice president of the Health and Medicine Counsel of Washington took the stage. He detailed how our meetings with congressional staff would go the next day. 

METAvivor's "Stage IV Stampede"
training in Washington, DC. 
He then explained the talking points we would present to staffers. First, we were to explain the need for $2 billion more funds for the National Institutes of Health (NIH). The NIH supports basic, translational, and clinical research into various diseases and disorders. Each year Congress decides how much funding should go to the NIH and the National Cancer Institute (NCI), and includes recommendations for research areas of support and interest. 

METAvivor’s hope is for more NIH funding to expand research into controlling and eliminating cancer that has already spread throughout the body.

Dane also coached us to encourage Congress to support the Department of Defense’s Congressional Directed Medical Research Program, which recently has begun to prioritize metastatic cancer research. 

Another goal was to educate both representatives and senators about two bills currently in the House of Representatives. The first bill, H.R. 6114, is the bipartisan Metastatic Breast Cancer Access to Care Act, which would eliminate the Medicare waiting period for patients with metastatic breast cancer. (Currently, such patients have to wait at least six months –often nearly 24 months – for Medicare coverage to fight the disease.) 

The second bill, H.R. 1409, the bipartisan Cancer Drug Parity Act, would ensure patients pay the lowest out-of-pocket costs possible, regardless of where they receive care, or form of treatment. 

Our teams were to encourage representatives to co-sponsor both bills, and for senators to introduce companion bills and work to see that the House bills are enacted. 
Ms. Estela Shimanek, the
author's grandmother.

Above all else, we were to share our personal stories about how MBC had affected our lives. 

That got me fired up. After nearly two years of having this disease put my family through the ringer, I was ready to speak up. 

Watch for the fourth part in Olivia’s series on, “Stage 4 Needs More.

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