Friday, October 25, 2019

Stage 4 Needs More: A Granddaughter’s Continued Journey into Breast Cancer Advocacy

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association

Editor’s Note: This story is a follow-up to the author’s five-part series, “Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer,” about her personal experience with metastatic (stage 4) breast cancer. In October, which is Breast Cancer Awareness Month, she made a return advocacy visit to Washington, D.C. 

Ms. Suárez Returns to Washington

“Thank you for flying with us, and welcome to Washington, D.C.”

Olivia's grandmother, Estela Shimanek (left)
with Olivia in 2003.
Photo by Olivia Suarez
I stood up from my seat on the plane, relieved to finally stretch my legs after a three-hour flight. After exiting the jetway and entering the rush of people at Reagan International Airport, reality really sunk in. I was back in the nation’s capital, elated to be back in a city that swept me off my feet last year.

It was Oct. 9, and I was back to advocate with METAvivor, a nonprofit organization that focuses on metastatic breast cancer (MBC) research, support, and awareness.

Metastatic breast cancer, more commonly known as stage 4 breast cancer, is breast cancer that has spread, or metastasized, to another part of the body. This includes the lungs, liver, bones, and/or brain. When the cancer gets to this stage, it is incurable. MBC patients live, on average, 18 to 36 months after diagnosis.

Last year, I took part in METAvivor’s Stage IV Stampede, a two-day event inviting MBC patients, caretakers, and other patient advocates to lobby on Capitol Hill for more federal research funding, among other measures. I participated just two months after my grandma, Estela, died from metastatic breast cancer. She battled the disease for 18 months and was only 70 years old when she passed.

Olivia stands in front of the U.S. Capitol Building in
Washington, D.C. before advocacy training.
Photo by Olivia Suarez
It’s been a little more than a year since her death, and sometimes, it still doesn’t feel real – not having her around, not being able to celebrate the holidays with her, or to call or visit. I continue to grieve, but time has dulled the sting and allowed me to cherish and celebrate my memories of her. Because of my greater perspective on my grandma’s cancer battle, I decided to return to D.C. for this year’s Stage IV Stampede. Families still suffer from this disease, and I wanted to raise awareness among lawmakers who could help MBC patients.

Round 2 in the 202

On the first day of this year’s METAvivor’s Stage IV Stampede, I walked through the doors of the Holiday Inn, the same meeting site as last year, for the advocacy training. Event organizers briefed participants, new and returning, on the talking points we would share with our senators and representatives.

Several of the topics we’d convey were similar to those of last year: We would push for a $2.5 billion funding increase to the National Institutes of Health (NIH) for fiscal year 2020 (raising total NIH funding to $41.6 billion annually). NIH supports research into various diseases and disorders, including cancer. Every year, Congress determines how much funding NIH receives (as well as the National Cancer Institute, or NCI), and also makes recommendations for research areas of support and interest.

METAvivor wants more NIH funding for research on controlling and eliminating cancer that has spread throughout the body.

Organizers also urged us to ask lawmakers to support the Department of Defense’s Congressional Directed Medical Research Program, which recently prioritized metastatic cancer research. The U.S. House of Representatives is currently proposing a $20 million increase for this program, bringing it up to $150 million annually, so we were instructed to ask representatives to support this increase.

I took notes as METAvivor also earmarked two House bills for lawmakers to support, also similar to last year’s legislation. The first bill, HR 2178, is the bipartisan Metastatic Breast Cancer Access to Care Act, which would eliminate the waiting periods for both Social Security Disability Insurance (SSDI) and Medicare for patents with stage 4 breast cancer. MBC patients currently must wait five months for SSDI benefits and up to 24 months for Medicare coverage to begin. This is a serious issue, considering MBC patients’ short life expectancy after diagnosis. (The Senate has a companion bill with the same goal.)

The second bill, HR 1730, is the bipartisan Cancer Drug Parity Act, which would help patients pay the lowest out-of-pocket costs possible, regardless of where or how they receive treatment. Senators have introduced a companion bill to the Cancer Drug Parity Act as well.

Volunteers are briefed on the Cancer Drug Parity Act, which
would help patients with out-of-pocket costs regardless of
how they get treatment. Photo by Olivia Suarez
Our team of volunteers also was tasked with urging lawmakers to sign a letter to the National Cancer Institute on updating the Surveillance, Epidemiology, and End Results (SEER) Registry. This database, established by Congress in 1971, keeps record of cancer patients’ basic information (like date of birth and gender), primary tumor site, stage of diagnosis, and initial course of treatment. It hasn’t been updated since 1971, however, so it lacks an accurate record of metastatic cancer cases and deaths caused by metastatic cancer. By updating the SEER Registry, NCI and Congress can better understand and address various forms of cancer like stage 4 breast cancer.

After learning about this year’s proposals, and drawing from my experience visiting with congressional staff last year, I felt confident about the meetings on Capitol Hill the next morning. I reminded myself that this wasn’t just to help current patients and their families, but also to honor my grandma, whose life was cut short by of this disease.

I was ready for round 2.

Watch for the second part of Olivia’s story, “New and Not-So-New Faces” on

1 comment :

Maureen Adair MD said...

Wonderful to hear about this advocacy effort at the national level for breast cancer treatment!

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