Breaking down barriers
From detection to diagnosis of breast cancer, CECaNN can do
Amber Colvard was weeks away from her 33rd birthday when she found an unusually large lump in her breast. The hours dragged on as she spent a sleepless night waiting for the doctor’s office to open.
“It was devastating,” said Colvard, a striking redhead who works as a hairdresser. “I got a lump in my throat thinking about the lump in my breast.”
Colvard visited Women’s Health Specialists in Chico and was told she needed a mammogram, but the earliest appointment wouldn’t be for two weeks. Her usually laid-back husband sprang into overdrive, and found her an appointment the next day in Paradise at the Feather River Hospital Outpatient Center, where Colvard got another dose of unnerving news: She would need a biopsy.
Colvard’s insurance wouldn’t cover the test, so she applied for the County Medical Services program, which assists rural low-income individuals. The process involved heaps of paperwork and running around town to collect proof of income and more. In the end, she was disqualified because her and her husband’s combined income was too high.
By a stroke of luck, a woman in the outpatient center had told Colvard about the Clinical Education, Coordination and Nurse Navigation (CECaNN) program. CECaNN supports women financially and emotionally as they go from finding a breast abnormality to a “cancer” or “not cancer” diagnosis. It is run by the California Health Collaborative (CHC), a statewide nonprofit that helps individuals who have limited access to health care, whether due to culture, language, education, affordability or other barriers.
The day after her doctor’s appointment, Colvard spoke with Patty Molinaro, CECaNN’s “nurse navigator.” Molinaro and the CECaNN program would prove to play an integral role in Colvard’s brief but emotionally trying brush with breast cancer.
The North State branch of the CHC created the CECaNN program in April 2010 after receiving a grant from the Sacramento Valley affiliate of Susan G. Komen for the Cure, the largest and best-funded breast-cancer organization in the nation. That grant came on the heels of a state decision to freeze funding for 2010 for the breast-cancer-detection program Every Woman Counts, a state program for women who are under- or uninsured.
“The ethical fallout of [the freezing of] that program was that there was no one there to help,” said CECaNN program manager Barbara Clifford.
During its first calendar year, the CECaNN program assisted 89 rural women from Butte, Colusa and Plumas counties through the process of getting a definitive diagnosis. For each woman, Molinaro, Clifford and a third team member worked to get a diagnosis within 60 days. “The message [from research] is that early detection is the answer to survival, so time is of the essence,” Clifford said.
For those with cancer, they worked to pair the women with affordable and accessible doctors based on each woman’s circumstances.
The CECaNN program recently received another Komen grant and began its second calendar year April 1; it also expanded into Glenn and Tehama counties, where Clifford and her team noticed a growing need.
Clifford, a longtime North State resident who worked with urban women while managing the Bay Area branch of Every Woman Counts, knows the unique challenges rural women face that urban women do not when it comes to getting a breast-cancer diagnosis, such as fewer local breast-cancer advocacy groups and far-away testing and treatment facilities.
In addition to geographical isolation, many rural women are Hispanic and Hmong immigrants who speak little or no English, or have never been educated about the disease and the urgency associated with getting a diagnosis.
Add to that differing cultural conceptions surrounding the disease, said Clifford. Many immigrant women and single rural mothers fear how an affirmative breast-cancer diagnosis might affect their family units.
“When you’re the rock of a family, many women feel shame or guilt for the situation they’re in, and what it means to the people whose lives you support every day,” she said. “Many women also feel embarrassment, because on top of all that, it’s breast cancer.”
To help women cope, Clifford and her team work one-on-one with them to ensure they have all the information and resources they need to schedule and attend doctor’s appointments, make informed decisions, and cope emotionally with the process of detecting cancer, which often includes expensive biopsies, ultrasounds and MRIs.
Clifford spends her time negotiating with fee-for-service plans (paying per visit and procedure) and insurance companies, as well as digging for discounts (anything from a hotel stay to a gas bill), creating partnerships with other nonprofits, and finding other clever ways to fund each woman’s treatment. The “coveted Komen funds,” as she calls them, keep the program afloat when Clifford has exhausted the list of local, regional, state and national funding sources.
“We partner with every little pocket of people to make it work,” Clifford said. “It could be high school kids cleaning a [woman’s] house, or helping a woman get her groceries. It’s not always money resources.”
Molinaro, a registered nurse and breast-cancer survivor herself, supports each woman every step of the way, including by acting as a liaison at doctor’s appointments, answering questions, and explaining medical charts in layman’s terms.
Colvard received a “not cancer” diagnosis in early March—less than three weeks after she discovered the lump in her breast. The CECaNN program covered all of Colvard’s expenses, including her biopsy, two ultrasounds and an MRI; it even retroactively paid for her mammogram.
“I cannot imagine where I would be without them,” Colvard said. “I’d probably still be fighting with my insurance company over the biopsy.”
With the second Komen grant, Clifford anticipates the CECaNN program will be in place until at least April 2012.
Today, Colvard is happy to be cancer-free, but she is still going back and forth with her insurance company over getting a second opinion on whether the lump—which turned out to be a fibrocystic mass—poses a threat to her health.
Colvard credits Molinaro and the CECaNN program for keeping her sane throughout the process.
“[Molinaro] was super-sweet, super-caring, and totally took on that nonpushy mom role,” said Colvard. “When I had procedures, she’d call me after. She’d tell me what to expect. She just made sure I had everything I needed.”