FIGHTING AN UPHILL BATTLE

By SHELBY SCHROEDER

Local black women are 26.4 percent more likely to die of breast cancer than other women in Mahoning County.

YOUNGSTOWN — Minority women are at the greatest risk of dying of breast cancer in Ohio.

Experts are working hard to curb this trend.

While private organizations are working to cut the costs of education, screening and treatment, the biggest challenge for health professionals remains: How can they reach women who are at the highest risk?

For some, getting the message out is as simple as telling a friend.

Stephanie Coleman-Jordan, who lives on the North Side of Youngstown, has discussed breast cancer since she was a teenager. Her mother died from it in 1979, when Coleman-Jordan was only 15.

“Because of the neighborhood I grew up in, everyone knew my mother passed away,” said Coleman-Jordan. “As I got older, I was really able to explain it to people.”

She said her mother’s battle with breast cancer gave her an education that few others in her community are likely to receive.

Experts say the lack of education may be raising the death rate.

According to 2005 research by the Censeo group, an independent research company, black women in Mahoning County are 26.4 percent more likely to die of breast cancer than other women in the county. Those rates are also higher than both the state and national level.

Though black women are less likely to develop breast cancer, they’re more likely to die from it than women of other races. Health advocates say they are simply less likely to have breast exams or report problems until after the cancer has spread.

Susan G. Komen for the Cure — the organization known for its fundraising programs like Race for the Cure and its distinctive pink product labeling — funded research that found the high death incidences in the Mahoning Valley.

Sophie Sureau, executive director of Komen’s Northeast Ohio branch, said many women in the county are diagnosed in the late stage of breast cancer. By then the tumor has spread from the breast tissue to the lymph nodes or other tissues, making treatment much less effective, according to Komen literature.

That was the case of Coleman-Jordan’s mother, Gloria Coleman, who died at 41.

Sureau said the high death rate can usually be attributed to a handful of financial problems. For some it’s being uninsured or underinsured, uneducated on self-exams, not having transportation or just not knowing where to go with a problem. Many low-income women “put health at the bottom of the list,” she said.

After her mother’s death, a doctor recommended Coleman-Jordan and her four sisters receive regular exams beginning in their early 20s. The family made the checkups a yearly tradition, but after nearly 20 years of getting mammograms, Coleman-Jordan has realized that being uninsured makes acquiring the recommended exam a challenge.

In response to the lack of coverage, Komen donates a portion of its proceeds to local organizations that provide education, screening and treatment.

In May, Komen donated $372,126 in the Mahoning Valley, and more than $1 million to Northeastern Ohio organizations.

One of the five area recipients was the American Cancer Society of Northeast Ohio, which operates from a Canfield office.

Deborah Moore, the director of the region’s ACS, works with a small staff to bring guest speakers to churches and women’s groups, as well as to link women with health professionals. The ACS can help pair patients with more than a dozen organizations that help pay for diagnoses, screenings, treatment, temporary lodging, bill assistance and transportation.

With all the available programming, “Awareness is the biggest obstacle,” Moore said, adding the late detection rates should be much lower.

To help combat unawareness, the ACS works with the YWCA of Youngstown to attract inner-city women who may have never visited a doctor, let alone received a mammogram. The YWCA, which received a $65,000 grant from Komen in May, offers the MammoVan, a traveling exam room that provides mammograms and clinical breast exams to area women. Once a month, the van travels to low-income areas in Youngstown and Warren.

Coleman-Jordan said she’s always had to scan newspapers and follow word-of-mouth when it came to finding free mammograms.

“Every year, I never know how I’m going to get it done,” she said.

Her last mammogram came unexpectedly after she left her doctor’s office. In the parking lot was the MammoVan, which Coleman-Jordan cheers as a real help to the community.

“They don’t make you feel different because you’re getting checked in a mobile,” she said of the service.

A gap also exists for women who do have some insurance coverage. Women whose income is below $26,000 – which is 200-250 percent above the poverty line – begin to lose eligibility for many of the programs geared toward low-income women.

Sureau said costs incurred between diagnosis and treatment average $250,000. Not only is that number a deterrent to seek help, but it means those in need of treatment are faced with significant financial obstacles.

Women who receive a breast cancer diagnosis, like Lee Halarewicz of Aurora, must make a choice: skip treatment altogether, incur massive debt or lose income to qualify for medicaid and other assistance.

Halarewicz didn’t have a lump in her breast examined for more than a year after discovering it because she had no insurance and feared the medical bills. It was after she applied for family insurance for her kids in 2005 that a biopsy confirmed her doctor’s suspicion.

Her breast cancer had advanced and spread to her lymph nodes.

She and her husband chose to deplete their savings and retirement and restrict their household income to near the poverty level so Lee’s treatment could be covered by Medicaid. And while Medicaid covers the cost of her treatments — around $250,000 each year — the Halarewicz family is left to rely on grants, fundraisers, food banks, family and friends to retain their home and keep their three children in Catholic schools.

Finding that supplemental help wasn’t easy, either.

Of the 50 agencies Halarewicz was referred to for other financial assistance, only four agencies would help, she said.

“We’re sacrificing a lot, but this seems to be the best way to do it,” said Halarewicz, who is currently treating her sixth recurrence of cancer.

Halarewicz has a bachelor’s degree and considers herself an informed patient, reading the materials she gets from Komen and speaking with her doctor regularly. But she said she knows of uninformed women who aren’t getting the care they need. They don’t know where to look or what calls to make, she said, which is of particular concern for women who are struck with stress and fatigue from treatment.

“I have had the strength to get through it,” said Halarewicz. “But I can’t imagine those who are really sick and can’t do this.”

She, like many other women, continues to fight her cancer while financial concerns loom in the background.

“The biggest worry is financial [problems],” she said. “I try to go to gathering places [like] art galleries and yoga activities, but the worry is always there.”

One of Coleman-Jordan’s sisters was diagnosed with cancer three years ago, after finding a lump in her breast.

After removing the cancer and undergoing treatment, her sister is now cancer free at 45, four years older than their mother was when she passed.

“Mammograms have saved our lives,” Coleman-Jordan said. “If we could get them every six months, we would.”