Expecting the Unexpected

Betty Garrett advises it’s never too early to start planning for financial and insurance problems. Garrett, founder of CareGivers4Cancer (www.caregivers4cancer.com), a service that assists caregivers and their families, speaks from experience: She cared for her husband, Gene, during his battle with esophageal cancer.

Finances were not a major concern for her family, Garrett says, but she did find herself having to deal with a frustrating array of insurance issues. In one instance, Medicare paid for home health care when Gene required a feeding tube, only to inexplicably reverse itself and demand that the money be returned. The Garretts appealed, and after documenting that Gene needed the feeding tube to build his strength so he could undergo surgery, Medicare reapproved the payment. Hospital billing issues and conflicting information from Gene’s insurance providers were also common problems.

“It was never smooth sailing,” Garrett recalls. “Almost every week, something would crop up. There were times when I got so frustrated that I would cry.”

Caring for a loved one who is undergoing treatment for cancer is not easy. It often requires long hours and hard work, all of it made more difficult by the emotional stress that comes with watching a family member go through very grueling times.

What surprises many cancer patients and caregivers, however, are the financial and insurance issues that often accompany treatment—issues that the caregiver may have to deal with alone while his or her loved one concentrates on getting better. It can be an overwhelming challenge, experts say, but a little advanced planning and a willingness to ask for assistance can help.

Cancer treatment is expensive. And even when private insurance, Medicare or Medicaid is helping cover the costs, patients and their caregivers may still find themselves in financial straits as a result of loss of income and unanticipated expenses, says Catherine Credeur, GSW, OSW-C, a social worker at Louisiana State University Health Sciences Center in Shreveport, La., and volunteer communications director for the Association of Oncology Social Work.

According to Credeur, unanticipated expenses may include medications, especially newer biologic drugs; deductibles for physician and hospital bills; and home health care, as well as travel, lodging and meals if treatment is unavailable locally. In many cases, patients and caregivers may also find themselves paying for housekeeping, yard maintenance and other chores that they handled themselves before illness struck.

A loss of income may also jeopardize insurance coverage, warns Paul Gada, personal financial planning director for Allsup Inc., which helps individuals and companies navigate Social Security disability and Medicare. “Many times patients and caregivers are forced to stop working, so they lose an income stream,” Gada explains. “As a result, patients may lose their insurance or have to pay for it out of pocket, which can be expensive.”

Finances are something that patients and caregivers should start to address immediately, Gada says. If a loss of income or unexpected expenses appear likely during the course of treatment, work together to establish a budget and do what you can to cut expenses. Sometimes, Gada notes, this requires a dramatic shift in mindset and behavior, but it can be crucial to economic survival.

Many times patients and caregivers are forced to stop working, so they lose an income stream.

Equally important is filing for Social Security and employer- or private-based disability benefits as soon as possible. “Your major goal is to financially survive that application process, which can be lengthy, so you will have an income stream coming in and you have eligibility for Medicare,” Gada notes.

The early identification of state and regional assistance resources can also help during this difficult time. “Depending on your area, there may be dozens, perhaps hundreds of assistance programs,” Gada reports. “They include everything from standard needs-based cash assistance to help paying your utilities, property tax credits and food assistance.” Depending on your financial situation, you may also be eligible for pharmaceutical expense assistance through the state or the drug’s manufacturer.

An oncology social worker can help identify these assistance programs and guide you through any financial issues that might arise, Credeur says. If an oncology social worker isn’t available, the Association of Oncology Social Workers (www.aosw.org) or the American Cancer Society can help find one.

Credeur says a social worker may ask a lot of personal questions, but it’s important to provide all the information he or she needs to help you.

“Finances, for most of us, are a very private matter, but what I don’t know, I can’t help you resolve,” she notes. “Part of our job is to explore a family’s situation and circumstances and assess different forms of help that the patient and caregiver may not know are out there.”

Even more frustrating for cancer patients and their caregivers are the many problems that can arise regarding insurance. From his experience, Gada observes two areas of concern. One, maintain the policy, which can be difficult if there is a substantial loss of income or loss of job. “It can be an ongoing struggle to keep health-care coverage in place,” Gada notes. “Many times, patients drain their assets just trying to survive financially until they qualify for Social Security or Medicare.”

Two, understand exactly what your policy does and does not cover. “Learn your policy inside and out,” Gada advises. If your policy doesn’t cover your needs, it may be possible to change your options after diagnosis, but it depends on your plan, and there may be additional costs. Gada says that health-care reform should preclude denial of coverage for pre-existing conditions.

It’s fairly uncommon for patients and caregivers to come into treatment fully understanding how their insurance works, Credeur observes. “For many, this is something they have not really thought about until they’re facing some difficult circumstances,” she says. “They’re trying to deal with the illness itself, and the financial part is just another struggle.”

In addition, both the patient and the caregiver should strive to maintain good records. If you’re overwhelmed, don’t hesitate to delegate this task to a friend or family member.

Certain issues are unique to Medicaid and Medicare, Credeur adds. Because many states have low Medicaid reimbursement levels, finding a treatment provider who accepts Medicaid can be a challenge. Depending on your circumstances, you may have to travel to get the treatment you need.

The problem with Medicare is that it is divided into separate components, and many people do not have all of them. (Medicare Part A covers hospitalization, Part B covers outpatient care and Part D covers prescriptions.) “Most people think Medicare is one big thing, and it’s not,” Credeur states. “As a result, people often don’t have the complete package.” A potential problem with Medicare Part D is the so-called “doughnut hole,” which is a coverage gap in the middle of utilization that often catches people off guard, Credeur says.

Another issue with Part D is that some oncology drugs are considered specialty drugs, which generally means they cost more than $600 per month with reductions. “Under Medicare Part D, the co-pay is typically 25 percent,” Credeur explains. “With private insurance, it’s going to vary widely, but generally you can expect your co-pay on those drugs to be higher than they are for things such as antibiotics or pain relievers. And 25 percent of $2,000 to $5,000 a month is still a significant amount for most people.” However, she adds, there are co-pay foundations that assist with payments.

Regardless of whether you have private insurance, Medicare or Medicaid, Garrett recommends asking your insurance provider for a case manager at the beginning of treatment. This individual will be your liaison, assisting with any problems that might arise. Best of all, you won’t have to review your situation with a new person every time you call your insurance company.

It’s also a good idea to build a caregiving team to assist you during the treatment period. Your doctor, oncology social worker and insurance case manager can help you navigate the insurance maze, Credeur says, because they understand the questions insurance companies ask and, more importantly, how to respond to ensure payment.

In addition, both the patient and the caregiver should strive to maintain good records. If you’re overwhelmed, don’t hesitate to delegate this task to a friend or family member. Credeur recommends using a binder or folder with multiple pockets, so you can keep everything in one place. Important records of note include your insurance policy, proof of current income, outstanding medical bills and bills that have already been paid. In some cases, when insurance denies payment and you are left with the balance, it may be correctable if the proper diagnosis and billing code is used, so further investigation may be needed when you receive such notices.

One of the most common mistakes patients and caregivers make is trying to go it alone. Friends and family can be invaluable during the treatment process, but you have to ask. “It can be hard, especially if you’re self-sufficient,” notes Garrett. “But people want to be asked because it’s a position of honor.”

Garrett suggests asking a friend or family member to be the point person responsible for delegating chores or activities so that the caregiver can focus on financial and insurance issues. Another option, recommended by Credeur, is MyLifeline.org, which offers free personal websites to cancer patients, survivors and caregivers. The websites feature a “helping calendar” that lets visitors know exactly how and when they can help, whether it’s providing a meal on a particular day, running errands or picking up the kids.

Cancer treatment can be a difficult experience for both the patient and the caregiver. Financial and insurance issues only add to the stress, but it’s important to realize that you don’t have to go through it alone. Assistance and resources are available—all you have to do is reach out.