Cost of breast cancer burdens most women

Oct. 01--Financially, Paula Carver did everything right. She had a full-time job in her field -- accounting -- with health insurance. She lived within her means, avoiding credit-card and other debt, and put back money into savings.

Still, when Carver, then 54, was diagnosed with breast cancer in 2009, it took all her resources and energy to keep from going under -- and she had help from friends.

Carver felt a "grape-size" lump in her breast just a few days after her insurance policy at a new job kicked in. Biopsy showed the cancer was moderately aggressive, and suddenly she was on a cycle of weekly medical appointments, scans and debilitating chemotherapy.

"And I didn't stop working," Carver said -- she couldn't. Then a single woman, she needed both the income and the insurance.

The American Cancer Society estimates 1 in 8 women will be diagnosed with breast cancer sometime. While many occur in older women, 43 percent of the 231,840 new cases of invasive breast cancer in 2015 were diagnosed in women younger than 60.

"Anytime anyone is diagnosed with breast cancer, it's going to pose a financial burden," said Megan Brown, senior director of corporate communications for the American Cancer Society's Mid-South region. "Even when you have great health insurance, and you have the means to pay your co-pays, that's money that's not going to other things you and your family might need."

Brown said the American Cancer Society offers some resources -- to help with transportation, or wigs, for example -- while other agencies try to help in other ways. "It's a big puzzle -- everybody has a role to play," she said.

But she acknowledged women in the throes of cancer treatment -- especially those still working -- might not have the time or the physical energy to ferret those out.

Hospitals often provide nurse navigators or social workers to help patients find resources. But Carver said only help from friends made it possible for her to keep working. One drove her to chemo, usually bringing one of the few dinners she could routinely keep down. One began a fund for the wig Carver had no idea would cost so much. Another came nights to sit with her, and helped coordinate other friends to do tasks Carver would otherwise have to pay to have done -- yardwork, for example.

"That support kept me going," Carver said, "because every minute I wasn't sick, I was working."

Debra Sullivan, program director for the Cancer Support Community, said breast cancer patients accrue a lot of expenses insurance doesn't cover: gas to appointments, items to combat lymphedema, over-the-counter medications to treat side effects. It might be months after finishing treatment than they begin to feel better. The cancer could reocurr. And disability payments, if they qualify, can take months to kick in.

"If they're a two-income family, there's a loss of income ... when one person can't work, or can't work as much," Sullivan said. "A copay could be $40, and that doesn't sound like much -- unless you've going to the doctor once a week. It can really add up."

When Kristen Burke, 45, of Morristown was diagnosed with Stage 2 breast cancer in 2014, she and husband Lewis were on furlough after 10 years living in Cambodia, where they founded and ran an orphanage, Heritage House, through their nonprofit, Lighthouse Ministries.

The Burkes' insurance policy had covered them only overseas, but Burkee was able to get a policy through the Affordable Care Act marketplace to carry her through a "whole season of breast cancer" that included a double mastectomy.

"I got great doctors and was able to get the care I needed," Burke said, but the burden of meal planning and preparation and housekeeping fell to Lewis, now the sole provider, who was still traveling to Cambodia frequently, and their two sons.

Even with lots of help from family and friends, "it upsets so many things," Burke said.

The Burkes had counted on her income once back in the United States, and after completing treatment, Burke, a social worker, began a job. Then in April, she learned her cancer had returned, and she gave up her job, not wanting her co-workers to have to "pick up the slack" while she was completing months of intensive treatment.

Now more than a month away from the end of treatment, Burke is looking at "how to permanently replace the missing income." She said with support she's been able to maintain a positive attitude throughout chemo, surgery and radiation: "The only thing that does get me down is the financial aspect of it."

This year, Tennessee Breast Cancer Coalition will give $115,000 in small grants to women who need help "to keep their lights on and their water running and a roof over their heads," said Jami Ellis, director of the Nashville-based nonprofit, who said many of the women don't have paid sick leave.

And it's just a drop in the bucket, she said: "We have some years where we will run out of funding" and have to make December applicants for the small emergency grants reapply in January.

The fund was founded in 1995 by two women who had breast cancer. Initially, it gave grants to organizations, but in 2002 it began solely helping patients directly, Ellis said. It relies on donations, though "people forget about us until they're referring a patient to us." In 2015, it gave $109,000 to 123 women -- more than $21,000 in East Tennessee alone -- to help with insurance premiums, utilities, mortgage payments and medical bills.

Staff is just Ellis and one other employee.

"We know where every penny goes, who it's going to, and why," she said.

A committee considers applications and decides on the amount. Applicants are prescreened by phone and then mailed an application, Ellis said; more than half don't have computer access anyway.

"A lot of times, there's tears on both sides of the phone," she said. "They call, and they're just not sure what they're going to do, and to hear that someone can help is a relief. ... There's only a handful of people who do what we're doing, where you can call and say, 'I can't pay my rent, would you help me?' And it's so needed."

Two years after her first diagnosis, Carver, using payment plans, paid off the last of her medical bills. She was regularly hiking again -- her passion -- and met a fellow hiker she began dating in 2011; they were married in 2014.

"I didn't think I was ever going to be married, especially after being bald and sick," Carver said. "You just kind of think, 'I've had a good life.' I was just glad to be alive."

Then, in January, her cancer returned -- Stage 4. This time, Carver went on disability. Her husband, who had retired, went back to work, and she began a expensive regimen intended to keep the cancer from growing. This time, Carver said, she's less focused on making sure all the medical bills are paid, more on making the most of the days she feels good.

"I was so proud of myself for finally getting done with" my payment plans for the earlier bout of breast cancer, she said. "Then, here we go again."

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