‘You have a voice, please use it’: Portland cancer survivor shares her story with legislators
PORTLAND — When September rolls around, Beth Trierweiler is usually packing her bags and planning a trip to Washington, D.C., to meet with legislators about an issue that is personal for her.
Pictured is American Cancer Society Cancer Action Network volunteer advocate Beth Trierweiler of Portland. — Submitted photo
In November, the Portland woman will celebrate her 10th anniversary as a cancer survivor. She’s also in her eighth year volunteering as an advocate for the American Cancer Society Cancer Action Network (ACS CAN).
As an advocate, Trierweiler uses her story to influence public officials and candidates at the federal, state and local levels to make the fight against cancer a top priority.
“It is important to me to be a voice for others with a cancer story, and keep policies that affect cancer patients and their families a national priority with our lawmakers,” said Trierweiler. “Our legislature wants to hear stories. Stories make an impact.”
The annual ACS CAN Leadership Summit and Lobby Day on Sept. 15 brought Trierweiler and 500 other cancer survivors, patients and their loved ones from all 50 states together to tell their stories to members of Congress or their staff. But instead of meeting in person as in years past, they dialed into calls and logged onto virtual meetings, due to the coronavirus pandemic.
“We did actually everything virtually. We did all our training virtually. We did our meetings virtually. Some members of Congress chose to do a phone call vs. a video call,” said Trierweiler. “I think it worked well, and I believe our impact was the same. Especially at this time when they had not reached an agreement on the upcoming budget and the next COVID relief bill, it’s important to have a voice for cancer patients to make sure they’re included in those types of bills.”
The event looked different, but their ask was the same: more cancer research funding for the National Institutes of Health and the National Cancer Institute, and more funding for the Centers for Disease Control cancer prevention programs to treat and prevent a disease that is projected to kill more than 600,000 Americans this year, according to the ACS CAN.
American Cancer Society Cancer Action Network volunteer advocate Beth Trierweiler of Portland writes a thank-you note to a senator she met with via Zoom on ACS CAN’s Leadership Summit and Lobby Day on Sept. 15. — Submitted photo
“In times of COVID, a lot of things stop. … There are a lot of times when research sits on a shelf, and it might be the next best treatment or the next best step to finding a cure. There are some important budget decisions coming up, and it’s really important to keep that funding for research and prevention programs,” Trierweiler said. “We all know that prevention and early detection is, a lot of time, key when it comes to cancer.”
Trierweiler and other ACS CAN volunteer advocates also encouraged lawmakers to advance legislation that addresses disparities in cancer care, and supports more equitable access to cancer clinical trials through the HR 1966 Henrietta Lacks Enhancing Cancer Research Act. The act addresses the barriers for clinical trials.
Lacks died from an aggressive form of cervical cancer in 1951. Cells from her tumor were cultured and have been used in a variety of medical experiments, including testing the live polio vaccine.
“Because her cells worked so well for all of these breakthroughs, they named the act after her. But what this act actually is about is clinical trials,” Trierweiler said. “This legislation will direct the U.S. Government Accountability Office … to analyze federal and state policies that directly impact participation rates in cancer clinical trials.”
Why that’s important, according to Trierweiler, is that 20 percent of all cancer clinical trials fail because of insufficient patient enrollment. Barriers that prevent cancer patients from joining clinical trials include cost, location, transportation, child care and institutional practices.
“It’s a barrier, it’s an inequity because it doesn’t allow everybody to get the same type of treatment if there’s a clinical trial available,” she said. “And we are hot and heavy on equity, health disparities, and social determinants of health. I’m pleased about that. It’s been a long time coming.”
Another part of the usual summit in Washington is the Lights of Hope ceremony, where advocates place 40,000 luminaria bags, which loved ones have purchased and decorated to honor or remember someone with cancer, around the reflecting pool at the Lincoln Memorial.
American Cancer Society Cancer Action Network volunteer advocate Beth Trierweiler of Portland poses during a trip to Washington, D.C., to meet with legislators and urge them to support increased cancer research and prevention funding. — Submitted photo
This year, because of COVID, volunteers brought the ceremony home. In Michigan, advocates completed a virtual trip around the state through their Michigan Lights of Hope Tour fundraiser. Every bag purchased equaled two miles traveled across the state, with a goal of covering Michigan’s 1,866 miles of roadways.
The Michigan team surpassed their goal for this year, raising just over $15,000. Trierweiler herself raised $1,460 for ACS CAN — three times more than she usually does.
“I think this year people wanted to do something good,” she said.
Advocates had the option of creating their own luminaria ceremony. Trierweiler had originally planned a drive-through event at Portland High School in Ionia County. Due to rainy weather, she moved it to her living room and went live on Facebook, complete with the traditional bagpipe music that usually plays during the ceremony in Washington, D.C.
“I wanted to do my own event to respect everybody that donated money,” she said. “Everybody who provided me with names had at least one luminaria.”
Recruiting more advocates is at the top of Trierweiler’s priority list. She wants more voices willing to talk to legislators about why cancer research and prevention is important to them. Legislators have already heard her story several times, she said. She hopes others with their own stories about cancer will consider becoming an ACS CAN advocate.
“My voice gets heard, many voices produce action. I’ve always believed that,” Trierweiler said. “We’re in a really good time in our country’s history to really impact change moving forward. There are so many people passionate about so many things. You have a voice, please use it.”
For more information, visit fightcancer.org online
Source: Daily News By Karen Bota
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