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The Cancer Survivor's New Battle

After "beating" their disease, millions skip follow-up care because of cost—even with insurance

Two years after undergoing a double mastectomy and chemotherapy so severe she was hospitalized in intensive care for several weeks, breast cancer survivor Denise Hicks should be following what her doctors call "the plan."

"I should be taking medication, I should be having tests and lab work," says the 51-year-old Californian. "But my choice is to pay virtually every cent I have to do that or be able to pay for my rent, food and gas."

Hicks has health insurance but already reached her coverage limits. So the CT scan that her oncologist "strongly advised" months ago to check a possible recurrence remains undone. "It would cost me $4,700 out of pocket—money I just can't afford." She's also skipping recommended medications. "One drug would cost me $167 a month and another is $200 a month," she says.

"So what am I doing? Well, I may soon be moving in with my 83-year-old mother, who lives in a trailer. But for now, I pray a lot," Hicks says.

Two million in limbo … and counting

Hick's disquieting predicament is not unique. At least 2 million Americans—roughly one in six cancer survivors—decide to forgo at least some of their recommended follow-up medical care because of the cost, according to recent research.

Like Hicks, who works as an emergency room nurse, "the vast majority of these cancer survivors have health insurance," says Kathryn Weaver of Wake Forest University Baptist Medical Center, who led the study. "But they still [may] have difficulties with high deductibles, copayments and other out-of-pocket costs."

Her findings, published in the medical journal Cancer, come after analyzing annual government surveys of more than 30,000 households from 2003 to 2006.

And those surveys were taken before the recent economic downturn and continued high unemployment.

These days, even more cancer survivors are believed to be skimping on, delaying or totally avoiding medical care because of money concerns.

Cancer has always been devastating to mind, body and finances. "But we're hearing more and more of these stories than we used to," says Anna McCourt, a supervisor at the National Cancer Information Center, a round-the-clock call center operated by the American Cancer Society (phone: 1-800-227-2345).

"People say they must choose between getting care or meeting daily living expenses—putting food on the table and paying their mortgages and utility bills," she says. "Because of out-of-pocket costs, they're avoiding tests they know they need, they're taking half doses of medication to make it last longer. But if you freeze because you can't afford heat this winter, cancer medication isn't going to be that helpful anyway."

Workplace woes

Although cancer survivors of all ages are doing without care because of costs, research indicates that those hardest hit are the men and women who were diagnosed before they are eligible for Medicare at age 65—and typically depend on employer health insurance. Blame it on a perfect storm of problems related to the workplace:

  • Increased cost, reduced benefits. "To keep rising premiums affordable, more employers are shifting costs to employees, resulting in a loss of benefits," explains Erin Moaratty of the Patient Advocate Foundation, which assists cancer patients and others facing medical debt crisis and other issues. "So if your $20 copay becomes a $40 copay and you need to see a doctor three times a week, it starts adding up—on top of your other expenses." Last year, the foundation saw a 15 percent increase in requests for help over 2008, "and more than 80 percent [of callers] were fully insured," says Moaratty.

  • Job loss. "A major issue is that many cancer survivors that were two-income households are now one-income households because of layoffs," adds McCourt. With fewer paychecks, cancer care takes a backseat.

  • Trouble getting rehired. Finding a job is hard for everyone these days, but can be even more difficult for cancer survivors. Denise Hicks says her well-paying job was filled while she was hospitalized at the very facility where she worked. "Everyone thought I was going to die, so they didn't hold my job." After a year of not working during her recovery, she now works as a "temp agency" nurse on month-by-month contracts—with reduced insurance benefits from what she had. "You go on job interviews and they notice a gap in your employment. Admit that you were on medical leave, and employers think it's because of mental issues or cancer—and no one wants to hire someone with either."
  • Insurance for you—or everyone else? In small businesses especially, some cancer survivors face a tough choice: "My employer said my treatment was raising rates for everyone else, so I was asked to find private insurance to not impact my coworkers," says Anne Creech, 64, who battled colon and breast cancer. She complied, but could only afford a policy with riders to exclude coverage for screenings or other cancer-related care—only to recently learn her cancer had returned. Weeks before the diagnosis, her big concern was coming up with $3,700 for a recommended colonoscopy. Now, she learns that her insurer won't pay for any treatment.

Help from the new health care law

But help is on the way for many like Creech. In July, the first major benefit of the new health care law took effect, a federal "high-risk pool" intended to provide coverage for people who can't buy affordable insurance because of preexisting medical conditions. The $5 billion program is a stop-gap measure until 2014, when the law fully kicks in and nobody can be denied coverage on the basis of health. At, uninsured people interested in "preexisting condition insurance plans" can determine whether they qualify for coverage. Even cancer survivors with employer insurance often face a devastating issue: getting cut off by insurers after reaching their annual or lifetime coverage limits. Roughly 100 million Americans have these coverage limits built into their policies.

But that will change starting next month, with provisions of the new health care law that prohibit insurance companies from setting lifetime limits. And over the next few years, annual limits will be phased out as well.

Starting with health insurance plans that begin or renew after Sept. 23, insurance companies are banned from placing lifetime limits on their coverage.

Also beginning Sept. 23, insurers must cover annual medical expenses up to at least $750,000. The minimum annual threshold rises to $1.25 million in September 2011 and increases to $2 million beginning in September 2012.

Limits will be completely prohibited starting Jan. 1, 2014.

For insured patients who are financially struggling, are uninsured or have inadequate insurance, help is also available from other organizations. See "Cancer Resources."

Sid Kirchheimer writes about health and consumer issues.

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