What Can I Do If My Insurance Company Won't Cover the Costs of Cancer Treatment?

A fellow caregiver asked...

What can I do if my insurance company refuses to cover many of the costs of cancer treatment?

Expert Answer

Senior Editor Melanie Haiken, who is responsible for Caring.com's coverage of cancer, general health, and family finance, discovered how important it is to provide accurate, targeted, usable health information to people facing difficult decisions.

More than you might think. As many cancer patients have learned the hard way, it's quite possible to get a great deal more coverage from your insurance company for cancer treatment, but you'll probably need to be very aggressive about enforcing rules and pursuing appeals.

Here's how to get everything you're entitled to from your insurance company:

1. Get help from social workers, patient advocates, and case managers.

Your hospital, HMO, or cancer clinic probably has either social workers or health advocates who can help you negotiate with your insurance company. In addition, they can help you locate additional financial resources to cover your out-of-pocket costs. 

If your hospital or medical center doesn't have patient advocates, you can also get this type of help by contacting the Patient Advocate Foundation on the Web or by calling toll-free: (800) 532-5274. The Foundation can help you understand your coverage and negotiate with your insurance company. It also provides referrals for families that have gotten into a debt crisis due to health expenses.

Tip: If you need to appeal an insurance coverage decision -- and many cancer patients do -- social workers and health advocates can help you do this, and their expertise increases the chance your appeal will be successful.

2. Get your insurance company to assign you a case manager.

Since this person works for the insurance company, she probably won't function as an advocate, but she can answer your questions or field them to the proper decision-makers. Having a case manager also makes it less likely that your issues will be subject to long delays or simply fall through the cracks.

3. Find out as much as you can about your coverage and where the gaps are.

There are four main areas where you're likely to take a financial hit:

  • Co-pays: These are the payments you're charged for specific services. You may have co-pays for each doctor or hospital visit, for lab visits, for other tests such as scans and X-rays, and for drugs and medications from the pharmacy.
  • Coinsurance: This is the term for the percentage of costs the patient pays. Many people, for example, have 80/20 plans, where the insurer pays 80 percent and the patient pays 20 percent.
  • Deductible: A deductible plan is set up so that the patient pays the full cost of all fees until the deductible is met. (The deductible is typically annual and resets each year.) What's confusing, though, is that some plans are set up so that some medical costs apply toward the deductible and others don't. If this is your situation, ask the insurance company to tell you exactly which costs count toward the deductible and how they notify you when your deductible is met.
  • Insurance cap: This is where many cancer patients are caught off guard. Some insurance plans have a cap on total medical costs. Once a patient reaches that limit, the plan will no longer cover any treatment costs. Some caps are annual and reset again the following year; some are "lifetime" caps, and once they're reached it's like having no insurance.

Tip: Understanding the terms of your policy will help you plan in advance and get a clearer picture of what your share of costs is likely to be. The more advance notice you have that your coverage is going to leave you with high costs, the sooner you can start applying for additional help.

4. Keep detailed records.

The secret to maximizing insurance value is to act as if you're preparing to appeal decisions before they happen. Keep detailed notes of all conversations with your doctor and with any representatives from the insurance company or the hospital business office you speak with. When you receive itemized statements or bills, make copies and keep them handy, highlighting any charges you don't understand or have questions about.

5. Act early and often.

If you find a mistake or a decision you wish to question or appeal, don't hesitate to call right away. This is your insurance; it's designed to protect you, and you have the right to question decisions. If you communicate by phone, take detailed notes and make sure you have the name and title of the person you're speaking with. If you communicate in writing, keep copies of any letters or communications you send.

Also, be sure to contact your doctor about the matter, as many errors are administrative or internal; it may be that the doctor simply coded the procedure or test incorrectly. If it's an instance in which the doctor needs to confirm that she recommended a specific drug or treatment, you can resubmit the claim with a copy of the denial letter and a letter or note from the doctor saying this treatment was her recommendation. Often this resolves the matter.

If you need to appeal a decision multiple times, don't hesitate to do so; stories abound of patients winning on a third or fourth appeal, often after threatening legal action.

6. Don't give up in frustration.

There will be days when it feels like the hours spent on the phone with the insurance company just aren't worth it. You'll be tempted to throw in the towel and figure you'll find the money somewhere else. But when you consider the difference it can make in your family's financial situation if you succeed in obtaining coverage for the procedures you or your loved one needs, it's time well spent. And the truth is, your time is better spent wrangling -- even if it means a lengthy appeals process -- than trying to find and apply for one-off grants and funds.

Think of it this way: If you have insurance, you're one step ahead of the game already. Now your job is to get it to pay. Bolster your confidence by reading the success stories of other cancer patients who've won the insurance game.