New message: Think beyond pink
Breast cancer group emphasizes research
About 100 people gathered Sunday in Schenley Park under a large canopy tent and twinkle lights.
Although there were hints of pink — table runners, samples of Panera’s pink ribbon bagels, rosé wine — the annual Lanterns of Hope, held by the local Young Women’s Breast Cancer Research Foundation, has a different tone from many other such events.
As society seems to be at peak saturation for pink awareness campaigns, especially during October, foundation co-founder Jennifer Kehm and her network want to spread the message that there’s more to the story than just awareness and early detection.
The group recognized the stories of nearly 20 women and one man who have been diagnosed with breast cancer — two of whom have recently died. The organization generally offers emotional support to those diagnosed and living with the disease at age 45 and younger.
“We share success stories all the time, but people still die,” said Ms. Kehm as she recognized a woman from the group who recently died at age 32 from metastatic breast cancer, which spreads beyond the breast area.
“We need to reorient the funding to metastatic,” she said
“I had it the first time when I was 31, I was stage 2 and as they say ‘caught early,’” Roberta Szpara said.
The now 41-year-old mother was re-diagnosed in February 2016 with metastatic, or stage 4, breast cancer, a terminal disease.
“My cancer came back in my bones and my liver. I have three children, so research is very important to me so that I can be there when they graduate elementary school,” she said.
According to a widely cited statistic, about 30 percent of women previously diagnosed with breast cancer will develop metastatic cancer. The life expectancy is anywhere from a few years to 10 years, according to the Susan G. Komen Foundation. A 2017 joint study from the National Cancer Institute and other researchers reported that just over 154,000 women in the U.S. are living with the advanced form.
Overall, heart disease is the No. 1 killer of women in the U.S., according to 2015 statistics from the Centers for Disease Control and Prevention. Lung cancer is No. 1 for cancer deaths for U.S. women. However, when it comes to rates of new cancer cases among U.S. women, breast cancer far exceeds any other form.
Ms. Szpara decided to quit her job in March to spend as much time as she can with her family while she continues to go to appointments and receive treatment, which she likens to a “full-time job.”
“I will be on treatment until some line of treatment no longer works,” she said.
Additionally, she makes trips to Washington, D.C., to lobby for breast cancer research funding.
It’s not just about buying products that display the pink ribbon, seeing NFL players wear pink, or wearing shirts that say “Save the Ta-tas,” it’s about money for scientists, she said.
“The awareness movement did help, but now we need to focus on the next step,” she said. “Everybody’s aware, now we need to focus on research.”
The Susan G. Komen Foundation, the largest nonprofit devoted to breast cancer, pledged $26 million in September to research aggressive breast cancers, 70 percent of which will go toward grants to research drug resistance and metastatic breast cancer.
According to the foundation’s figures, since 1982 it has given $998 million to research and $2.2 billion toward screening, education, treatment and psychosocial support.
Locally, Susan G. Komen of Greater Pennsylvania raised $1.3 million last year for mammogram vouchers, grants for biopsies, and transportation to and from appointments for underinsured Pennsylvanians in 53 counties.
The group raises its funds from the annual local Race for the Cure on held on Mother’s Day and through company partnerships — for example, two local car companies will give between $25 and $100 for each car sold.
The Young Women’s Breast Cancer Awareness Foundation benefits from that approach as well. For the past 10 years, proceeds from the local Panera sales of pink ribbon bagels — around $100,000 — have gone directly to fund the foundation’s emotional support groups.
In October 2016, the Komen foundation announced its “More Than Pink” campaign, a rallying cry to raise more funds.
“It’s a call to action that in order to continue research and be able to find better drugs to treat this, to find the cures, it requires more than wearing pink,” said Kathy Purcell, CEO of the Greater Pennsylvania chapter.
“They’ve done a good job up until now, and yes maybe they need to re-evaluate, and maybe all of us need to reevaluate,” Ms. Kehm said.
Part of that re-evaluation for Ms. Kehm and her group members is letting people know about aspects of breast cancer beyond just mammograms and pink — that young women as well as men can get it, that women who have their hair and appear healthy may be living with metastatic.
“I have my hair, so everyone thinks I’m OK. Even though I’m the sickest I’ve ever been,” Ms. Szpara said.
“It’s frustrating to see the amount of money raised and yet still there isn’t a cure. There are definitely medicines that have been developed that are helpful, and women are living longer,” she said.
At the lantern lighting Sunday, Ms. Kehm, a survivor herself, told the stories of Kim, who lived with breast cancer as a single woman; Megan, who was diagnosed at 26 and who recently had her first child; and Kirby, the lone man in her support group who was recently featured on a Times Square billboard for those living with metastatic cancer.
Ms. Kehm vowed: “We will fight until breast cancer is cured.”