The National Breast Cancer Coalition has a mission of finding a cure by 2020. Sargent says the field begs for transparency, with privately funded research often done behind closed doors. If the medical community at large could learn from each other’s failures, it could help direct someone towards trying a new approach.
It was 10 a.m., 10 years ago this New Year’s Eve when Marianne Sargent, of Greece, N.Y., found out she had breast cancer.
“It was like, ‘I think you’ve called the wrong number,” says Sargent, a retired elementary school teacher. “Typical beginner mistakes. ‘I feel fine, nobody in my family has breast cancer, and where did this come from?’ It was definitely a totally out-of-the-blue, knock-your-socks-off, unexpected experience.”
Sargent had a benign tumor removed, a fairly routine procedure, when doctors found cancer cells lurking in the area. Many appointments, several surgeries and five years of medication later, Sargent, a wife, mom and grandma, is cancer-free.
Her story, she knows, is a successful one. But the experience jumpstarted her interest in research and patient care legislation, and now she and many others like her at the Breast Cancer Coalition of Rochester in New York are working to advocate for breast cancer patients.
Amidst a myriad of pink ribbons, funding drives and walks during Breast Cancer Awareness Month in October, the work on the advocacy end goes on year-round.
“Really, who isn’t aware?” Sargent says. “There’s different levels of understanding, but everybody knows, everybody has empathy because we think of this as something that happens to people that’s out of our control. But the bottom line, we need to move beyond those stages in order to end breast cancer.”
Sargent chairs the advocacy committee at BCCR. The group reviews pending state and federal legislation that would affect breast cancer research, health care or involving the ban of chemical agencies linked to cancer.
Sargent became involved with BCCR when she was undergoing treatment, and then she joined its volunteer ranks on the advocacy committee, of which she’s been chair of since 2009.
“I guess it opened my eyes,” Sargent says, “It was a whole education into an another language and a science I knew nothing about.”
The group works to ensure legislation gets passed that can help patients, but they’re not paid lobbyists. They had a victory in recent weeks, when New York Gov. Andrew Cuomo signed a bill into law that would ensure coverage for oral chemotherapy drugs, whereas before it was only applicable to intravenous treatments. And there’s been past efforts on securing insurance for a woman who has no coverage upon diagnosis.
Just like learning medical jargon, pouring over pages of legislation is a new hobby of sorts for Sargent.
“The hardest part for us as advocates who are not scientists, who are not doctors, is trying to wrap our heads around what’s a really good piece of legislation,” she said. “Sometimes someone comes to you with what really amounts to a sales pitch, but sometimes the more we learn the more we realize there’s some good parts or some parts that don’t make sense or don’t quite fit with our philosophy.”
One bill that the advocacy committee is currently reviewing is before Congress. Presently, Medicaid only funds breast prosthetics that are standard sizes, while custom-fitted ones are not covered.
“Should the sizes not work for you and you would need a custom prosthetic, they’re not going to cover that,” Sargent said. “A person who might elect to have a breast reconstruction, that would be covered, which is actually a much more extensive medical procedure that will wind up costing more money than the custom-made prothesis.”
Now it’s finding out the logic behind the current system, what would change, and what women who’ve gone through the system have experienced. The group is careful, Sargent says, to understand something before pushing for it.
In addition to legislation work, the advocacy committee and BCCR keep their eyes peeled for other ways to fight to end breast cancer. The National Breast Cancer Coalition has a mission of finding a cure by 2020.
Sargent says the field begs for transparency, with privately funded research often done behind closed doors. If the medical community at large could learn from each other’s failures, it could help direct someone towards trying a new approach.
“Now how will we invest those valuable research dollars, especially in an economy when those dollars are fewer and need to be spent wisely?” she said. “Let’s be sure that what we’re doing makes sense.”
Holly Anderson, executive director of BCCR, says that one of the group’s initiatives is to fund research for new ideas, or a hypothesis without data, that may not qualify for a grant on a larger scale. The hope is that new ideas with new researchers coming from different areas of medicine may be able to shed light on finding a cure.
“What we’re doing isn’t enough,” Anderson said. “We have to be smarter about research, we have to hold research accountable. We can’t just keep doing the same old type. We have to have innovative ideas.”