10 tips to manage financial toxicity

1. Talk about your financial concerns up front

Experts urge you to sit down with your cancer team from the beginning and ask what financial assistance is available. At the first visit with any new provider, ask for the name and contact information of someone responsible for billing. Before debt starts piling up, ask about lower-cost options, payment plans, grants, or pharmaceutical assistance programs. This will ensure that you have people working for you from the start.

2. Don’t feel ashamed to ask for help

In a system “designed to create debt,” as one expert said, you are not a failure for needing financial assistance. Caroline said that she has to advocate for herself and her family: “I get very blunt. I tell them, ‘I am not going away.’ I don’t want to leave this big mess for my family.” And Linda urges, “Get to know the names of contact people at your cancer center, connect with someone in the pharmacy, don’t be afraid to contact your oncologist.” Healthcare providers know this is a problem and they want to help. Find more financial resources.

3. Ask to meet with a patient navigator

Most oncology departments have patient navigators, paid professionals whose job it is to help you find a way to get the best care available instead of worrying about bills. Meet with your patient navigator early and designate someone in your HIPAA files who has the right to talk to them on your behalf.

4. Contact your medication’s manufacturer for assistance programs

Pam Traxel of the American Cancer Society’s Cancer Action Network urges people not to be shy with drug manufacturers. If medication seems unaffordable even with your insurance, look on the bottle or online for a Patient Assistance telephone number. These programs sometimes cover the entire cost. If you don’t qualify for company assistance, they may be able to point you to other sources of funding.

5. Pay close attention to your insurance plan

Traxel advises everyone to scrutinize their insurance options, especially after initial treatment. It can make a significant difference in your out-of-pocket costs. Review your options annually during open enrollment when you can make changes. Make sure that the doctors you want to see are in network. See if your medications are on formulary and what tier they are in the formulary. Different tiers have different co-pays, and you may have to call to find out. If you have Medicare, you can work with an independent broker who is also a Certified Senior Advisor and does not charge a fee. They use software to compare all available plans and help you find the most affordable coverage for your medications.

6. Don’t accept insurance denials

All insurance plans have appeal processes and Traxel urges you to use them. “Very few people appeal their denials, yet many succeed. Don’t accept the NO – even if it takes a few tries.” Many private insurance companies have hotlines. You can also turn to your state department of insurance, which should have an advocate or ombudsperson you can contact for help. Learn more about dealing with a claim denial. 

7. Know your rights: No Surprises Act, ACA, and WHCRA

• Starting in 2022, the No Surprises Act protects you against large bills from out-of-network hospitals, doctors, or other providers that you did not choose (for example: your surgeon is in-network, but the anesthesiologist was not). These providers must accept payment at the level covered by your insurance, even if they are not on your plan.

Learn more about the No Surprises Act and its potential impact on you. If you think you were billed incorrectly, call the No Surprises Help Desk at 1-800-985-3059, 8 a.m. to 8 p.m. ET, seven days a week, or submit a complaint online.

• Under the 2010 Affordable Care Act (ACA), you cannot be denied coverage because you have a history of breast cancer.
• The Women’s Health and Cancer Rights Act (WHCRA) of 1998 mandates that all people with breast cancer who have a mastectomy have a right to:
  • reconstruction of a removed breast
  • surgery and reconstruction of the other breast to match
  • external prostheses needed before or during reconstruction
  • treatment for complications at all stages of mastectomy, including lymphedema

Read about the campaign to restore the S code with CMS for DIEP-flap breast reconstruction.

8. Choose a “sludge” assistant

Researchers have a name for the administrative burden of dealing with insurance companies: sludge. If you don’t have the time or energy for sludge, find a trusted person who is good at this. Start the call with yourself and that person on speakerphone and say: “Hi, I am [your name] and I authorize [their name] to speak with you on my behalf.” This person can be your stand-in for appealing claims that were denied, setting up payment plans, applying for grants, etc. Let others go to bat for you, while you take on the cancer.

9. Look for grants and free services

Our staff spend a lot of time guiding people to reliable sources of financial assistance, including The LBBC Fund. Many organizations provide help ranging from cash grants to bras and wigs, restorative trips, and holiday celebrations. Sheri found licensed pilots who provide free flights along the East Coast for treatment (Patient Airline Lift Services and Angel Flights). Learn about financial assistance programs and services.

10. Avoid hospital-based loans

A predatory new industry has sprung up, seeming to offer low interest loans or payment plans through hospitals and medical centers. These can add hundreds, even thousands of dollars to your medical bills. And low rates can jump suddenly if loans are not paid off during a short introductory period. This system also deepens existing inequities: borrowers who can afford larger monthly payments qualify for lower interest rates, while low-income patients must pay more.