Paying the healthcare bills for chemotherapy can be a challenge for everyone. For those with health insurance, a bulk of the expenses will likely be covered by your insurance plan. But what often comes as a shock is just how much patients have to pay on their own. These “out-of-pocket” treatment expenses can be a burden that quickly adds up.

According to a 2013 study, the average out-of-pocket cost for cancer patients is about $4,720 over a two-year period. Another study published in 2014 places the average out-of-pocket expenses and lost wages for women with breast cancer at $1,455 each month. These unexpected costs can be so challenging that they force patients to borrow money, use all their savings, and cut back on household spending for food and clothing.

Being financially stressed can also impact how well patients follow their treatment plans. For example, to save money and make prescriptions last longer, some patients take less medications than prescribed, only fill part of a prescription, or don’t fill a prescription at all.

A Tough Conversation

To help avoid some of the financial stress of out-of-pocket costs, it’s important to talk with your oncologist about the expenses at the start of your treatment.

A study found that while 44 percent of cancer patients have some level of financial stress, only 14 percent talk about the costs with their doctor. There’s no real reason for this, but research shows that both patients and doctors have a hard time talking about the financial costs of treatment. When doctors were asked how often they discuss costs with their patients, 42 percent said “always or most of the time.” But 26 percent said they “rarely or never” talk about it.

Finances can be a tough topic of conversation, especially since doctors don’t always know how much a patient can expect to pay out-of-pocket. Costs vary for different treatment options. Costs are also different based on each patient’s insurance coverage. Many doctors also said they often don’t have enough time during patients’ visits to discuss finances.

But you shouldn’t let these factors stop you from bringing up the topic with your oncologist. And don’t be embarrassed. If your oncologist seems unsure about your out-of-pocket costs, ask to speak with another member of the treatment team, like a nurse or social worker, who might be of better help.

Think about asking your oncologist and healthcare team about your treatment plan before calling your insurance company. Learning the kinds of out-of-pocket expenses that you might incur can help you and your family plan ahead.

Know What to Expect

Your possible out-of-pocket expenses can play a role in choosing a treatment facility. The fees you might have to pay on your own can include:

  • Insurance deductibles and co-payments
  • Medications
  • Gas and parking charges for travel to doctor visits, clinics, and treatment appointments
  • Accommodations for you or your family during treatment away from home
  • Meals during travel or clinic visits
  • Childcare
  • Clothing (such as wigs, hats, and scarves)
  • Medical supplies (such as breast forms and mastectomy bras)
  • Laundry fees while away from home
  • Food supplements for special diet

Cancer treatment may also mean missed time from work. If you don’t have paid sick leave, it means losing part of your salary. Even more money can be lost if you or your family member has to quit or take a leave of absence from your job during your treatment and recovery time.

When choosing which treatment facility to visit for your care, consider how out-of-pocket costs might be different at each location. For example, choosing a facility closer to your home will save you money on the costs for travel fees and accommodations.

To find out what type of resources the treatment facility offers to help with out-of-pocket expenses, ask the following

  • Is there a co-pay each time I have chemotherapy?
  • Is there a less expensive drug available that I can be prescribed? Or is there a generic brand I can use that will have the same effect?
  • Do you offer any payment plans, such as an interest-free or a monthly payment plan?
  • Are parking fees reduced for patients?
  • If I’m traveling a long distance, are there free or reduced-cost hotels or lodging nearby?
  • Where can I get free/low-cost child or elder care during my treatment?
  • Are there ways to change my treatment schedule, if needed, to work around my or my caregiver’s job and schedule?

Be Organized

Being organized is one of the best ways to manage the hidden costs of your treatment, and can even help you save money. Keep all your healthcare information in one place. Organize your paperwork with file folders or a binder to keep track of your insurance policies and agencies that might offer financial support. File away receipts of any money you spend out-of-pocket. This includes medical appointment co-payments and pharmacy receipts. Healthcare expenses of a certain dollar amount can be claimed on your annual income taxes.

It’s also a good idea to take notes when you speak with your insurance company. Write down when you called, who you you spoke with, and what was said. This can help you track any conversations about your deductibles, co-payments, and other expenses.

Get Help

Finding the right resources to help to pay for your out-of-pocket expenses or to make up for lost wages requires some work. Whether it’s from the federal or local government, area charitable organizations, or family and friends, help is available:

The Affordable Care Act. Passed in 2010, The Affordable Care Act (ACA) offers some help with high out-of-pocket costs. The ACA includes several rules to protect cancer patients and their families:

  • Health insurers are banned from putting lifetime and yearly limits or “caps” on how much they reimburse for your healthcare.
  • Health insurers are banned from denying coverage to patients who have a history of cancer, also called a “pre-existing condition.”
  • People who have an illness can no longer be charged higher rates for coverage.
  • Preventive screening tests such as mammograms are now done at no cost.

The Family and Medical Leave Act. The Family and Medical Leave Act (FMLA) requires employers with 50 or more employees to give up to 12 weeks of unpaid leave. You cannot lose your job due to medical reasons for yourself or family members. Your employer also must keep your health insurance coverage during this time.

Family and friends. When word of your cancer diagnosis reaches your support circle of family and friends, you’re bound to get many offers of help. Questions of “What do you need?” and “What can we do to help?” are common. Your support circle can help in more ways than you think:

  • Meals—Pick a well-organized family member or friend to coordinate meal deliveries. Your support circle will be happy to take turns bringing packed lunches and dinners to your home during your treatment time. If you’re staying away from home, pick a hotel that has a room refrigerator so you can take the meals on the road.
  • Clothing—Ask someone to host a “Hat and Wig Party” in your honor. Guests bring hats, wigs, scarves (some funny and some serious) and you have the added bonus of a night of fun.
  • Childcare—Leaving your children in the care of close family and friends who offer free help can be a big relief, both emotionally and financially.
  • Fundraising—Look to join or sign-up for a free fundraising website. These sites allow family and friends to make online donations for your medical bills. You can send thank you messages to your donors directly from the site and give updates on your treatment.

Patient Financial Assistance. Many treatment centers offer financial help for low-income patients who cannot afford to pay for care. If this is a service you need, find out if your treatment offers the program.

Pharmaceutical companies. Most drug companies offer support to help patients manage the cost of their cancer prescriptions. Check the website of the drug’s maker to see if a patient drug assistance program is available. Each company has its own set of requirements for who qualifies for help.

Rx Hope. For patients who need help navigating patient assistance programs, RxHope helps get medications for free or at a low co-pay.

Patient Access Network Foundation. Low-income patients with a diagnosis of metastatic breast cancer can get help with out-of-pocket costs for cancer care.

Local organizations. Service or volunteer organizations in your community like the Salvation Army, the United Way, and Catholic Charities may offer help with living expenses and medications. Local churches and lodges may also have programs to help patients in need. Often, there are local not-for-profit organizations specifically for people with cancer. They may offer financial assistance, home-delivered meals, groceries, transportation, or wigs.

Joe’s House. An organization that provides an online lodging guide, Joe’s House helps cancer patients and their families find discounted places to stay near treatment centers.

Hope Lodge. This program of the American Cancer Society offers a free place to stay for families undergoing treatment away from home. Contact the American Cancer Society to see if there’s a location near your treatment center.

National Patient Travel Center. This resource guide lists all charitable, long-distance medical transportation available to patients in need, including airline tickets and ground travel.

Road To Recovery. This American Cancer Society program coordinates a network of volunteers who provide transportation for cancer patients who need a ride to treatment.

CancerCare. This New York-based not-for-profit provides financial assistance for transportation, home care, and childcare.

Look Good Feel Better. This American Cancer Society program offers classes and free wigs and makeup for women receiving breast cancer treatment.

National Association of Area Agencies on Aging. This program offers a variety of assistance for older adults and people with disabilities needing services like home healthcare, transportation, home-delivered meals, caregiver support, and health insurance assistance.

Federal and State government food programs. Several government programs are available to help low-income residents with food costs, including: Supplemental Nutrition Assistance Program (SNAP); The Emergency Food Assistance Program (TEFAP); Women’s, Infants and Children (WIC); and Commodity Supplemental Food Program (CSFP). Call the National Hunger Hotline or your local health/social services department to learn how to apply for these services.

At times of financial stress, most families have a hard time asking friends and family for help or turning to outside groups and government programs. Remember that many families need help with affording healthcare expenses when a loved one gets diagnosed with cancer. The tough times often don’t last long. Many families who donate to the charitable organizations that provide help with food and living expenses are often those who’ve been in the same situation themselves.