Cancer Caregiving: Avoiding Financial Trials and Traps

Deborah J. Cornwall
Author of Things I Wish I'd Known: Cancer Caregivers Speak Out
 

Cancer is an expensive disease that's fraught with uncertainties. Financial wellness in the face of cancer care requires caregivers to have their eyes wide open in understanding, planning for, and managing cash inflows and outflows so as to avoid surprises and moderate caregiver stress.

Formal interviews with 86 cancer caregivers and patients and dozens of informal conversations described key factors that caregivers need to anticipate: potential employment disruptions, health insurance, treatment and drug costs, collateral costs (for transportation, child care, lodging and meals if patient care is distant from home, and so on), and financial record-keeping.

1. Employment

Diagnosis and treatment are time-consuming, with unpredictability about "when" and "how long."  For people who don't control their own work schedules, whether caregivers or patients, cancer's physical and time demands may jeopardize income or even employment itself.

The Family Medical Leave Act (FMLA) allows patient or caregiver to take up to 12 weeks of unpaid leave if they work for a company with 50 or more employees. Regardless of your employer's size, talk with your supervisor directly to learn what kinds of schedule flexibility might be arranged and whether your company has an employee "sick leave bank" you might tap.

 Two useful resources for information and possible help are the Patient Advocate Foundation (www.patientadvocate.org) or the Cancer Legal Resource Center (www.disabilityrightslegalcenter.org).

                 2. Health Insurance

The Affordable Care Act, passed in 2010, contains a number of provisions in effect now to help cancer patients ensure that they have ongoing coverage that cannot be terminated as a result of a pre-existing condition and face no lifetime reimbursement limits. By January 1, 2014, all Americans will be able to get coverage with no annual reimbursement limit, and coverage for approved clinical trials.

Get a copy of the patient's health insurance policy and review it in detail to learn:

• What kinds of services for cancer diagnosis and treatment are covered?
• For the services that are covered, what qualifiers exist regarding the setting / location where they are covered (inpatient? outpatient? radiation center?) and what reimbursement level exists for each?
  
  Verify down to the level of the individual practitioner and the specific service location, since occasionally coding details may make the difference in whether a particular service at a particular location by a particular practitioner is or isn't covered by a given insurance company.
• What deductibles and co-pays might be required from you to accompany the insurance payments, and are there requirements or restrictions about where to obtain needed drugs (Cancer Center, Oncologist, Pharmacy, Mail Order, Other)? For example, if an oral chemo drug is prescribed, ensure that it's covered before filling the prescription because coverage policies vary widely among carriers.
• What pre-authorizations might be needed and from whom for a service or drug to be covered?

A comprehensive list of questions to guide insurance fact-finding can be found at the website for the American Society for Clinical Oncology (www.ASCO.org), under the tab for Managing Costs of Cancer Care. Some disabled individuals may be covered under Medicare (call 1-800-MEDICARE and ask for transfer to an ombudsman), and low-income patients may be covered under Medicaid (www.medicaid.gov).

3. Treatment and Drug Costs

Breakthroughs in treatment and improved quality-of-life are advancing through the research pipeline every day, but they're quickly increasing potential costs.

Once you've settled insurance coverage questions, be sure to investigate financial resources that might be available to help cover treatment co-pays, deductibles, and drugs. The first place to look (after asking your medical care team about possible local resources) may be the Partnership for Prescription Assistance, created by pharmaceutical research companies, which catalogs 475 public and private programs, including nearly 200 provided by pharmaceutical companies themselves. These can be accessed online at www.pparx.org or by phone at 1-888-4PPA-NOW.

4. Collateral Expenses

Collateral expenses are usually a function of how far you must travel to reach the cancer center where treatment will be delivered. Even a 20-mile commute into a major city can incur significant expenses in the form of gasoline, parking charges, and on-site caregiver meals. One significant resource to tap (especially for routine chemo or radiation visits) is the American Cancer Society's Road to Recovery Program, which taps volunteer drivers to provide transportation. Call 1-800-ACS-2345 or go to www.cancer.org to schedule rides.

For parking and meal support, some major cancer centers provide financial assistance or discounts, which can be accessed through the patient navigator or social work departments.

Housing for those traveling to distant locations is often a major challenge. First, check with your physician's office and the cancer center's patient navigator or social services department to see if there is an American Cancer Society Hope Lodge (1-800-ACS-2345) or other free housing facility that can be booked through hospital channels. Other housing resources may be found through National Hospital Hospitality Homes (1-800-542-9730), Joe's House (www.joeshouse.org/lodging), or religious organizations in the target city.

                 5. Personal Record Keeping

However well healthcare providers coordinate in delivering professional services, their billing practices will remind you that they're administratively distinct. You will receive bills and insurance statements from or about individual providers (surgeon, oncologist, radiologist, anesthesiologist, hospital for facilities and equipment, and so on) whose names you don't even recognize.

The volume of mail you'll receive as you're juggling a flurry of hands-on caregiving activities may tempt you to leave the pile for later. Experienced caregivers say "Don't!" Not only might you miss a time-sensitive communication from an insurer that could influence whether or not coverage is sustained or a particular service is covered, but the more you let the paperwork pile up, the more difficult it will be to get it under control later. Think "Flood Warning!," and start bailing as soon as the flow of paper begins.

Experienced caregivers also recommend that you set up files, computer spreadsheets, and a notebook for keeping track of each service in terms of (at least):

• Date
• Provider
• Cost, amount billed to the insurer, amount of your co-pay (for tax purposes), remaining balance (if any)
• Date submitted to insurance and date you received explanation of benefits
• Mileage / parking costs (recorded in a small spiral notebook kept in the car, again for tax purposes).

Most of the statements you receive will be informational only (called EOB, or Explanations of Benefits) and won't be invoices, at least at first. You will want to group paperwork for the same procedure and service date together to make it easier to match the explanations of benefits (from insurer) with the bills you'll receive later.

In addition, you may want to keep a separate record of all household bills that are paid online, together with the website, log-in name and passwords, credit card number used for each, and so on, so that another member of the caregiving team or a friend can keep the routine bills paid for you if for some reason you can't do it yourself.

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Cancer care is costly, stressful, and unpredictable. Knowing what financial factors to plan for can reduce one source of stress and help minimize financial shocks. That's what financial wellness is all about.

Deborah J. Cornwall is an experienced advocate on behalf of cancer patients and their families, working with the Cancer Action Network, the legislative advocacy affiliate of the American Cancer Society. She is the author of Things I Wish I'd Known: Cancer Caregivers Speak Out, a new book based on interviews with 86 cancer caregivers and conversations with dozens of patients and survivors. For more information or to purchase the book, go to www.thingsiwishidknown.com.