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Caring Currents

Paying for Cancer Care: What to Do When Insurance Says No

By , Caring.com senior editor
Last updated: February 08, 2010

I can't tell you how often I hear the same story from friends, colleagues, or from readers here at Caring.com. It always follows the same outline: The oncologist, working as diligently as possible to come up with an effective treatment plan, tells a cancer patient and her family that a particular treatment is the best option. But the treatment is expensive, and the insurance company refuses to cover it.

Sometimes the reason given is that it's not the "standard of care," meaning someone at the company has looked at a list of treatment protocols and doesn't see this one listed. Sometimes the treatment is deemed "experimental," although doctors have plenty of evidence that it works. Sometimes the reasons behind the decision are even murkier, such as in this great "rant" (his term, not mine) by oncologist and blogger Doctor David, who describes a case in which the insurance company's wording was that "there was no evidence" the treatment he'd selected was "useful in this disease."

Luckily for this particular patient, Doctor David is one of those doctors who really cares, and he cared enough to do a search, round up almost 500 articles documenting the usefulness of the scan he'd recommended, and send a selection off to the insurance company.

Of course, he was justifiably angry that the insurance company's physician reviewer, who, as he points out, isn't even an oncologist, would second guess the treatment that he, the expert, recommended for his patient.

Reading this post, I was reminded of so many moments when my family and I sat around the kitchen table exchanging epithets about my dad's insurance company because they'd refused to cover the cost of getting a second opinion and denied him coverage for radiation treatments to prolong his life because his diagnosis was considered "fatal" anyhow. How, we'd ask each other bitterly, would they feel if it were their father who might gain several months of life?

So I thought it would be a good time to revisit my tips for getting the insurance company to pay up. A quick review:

1. Know your policy well. Pore over the booklet you likely have in a file somewhere, that details what your insurance policy does and doesn't cover, and what the co-pays and other charges are for different procedures. If you have questions, call and ask, and make sure the representative goes through each topic thoroughly. Many insurance companies also now have websites you can use the same way, so check online as well. The booklet or website should also contain instructions for how to appeal a decision, and you'll be needing those as well.
2. Ask for help from your employer or insurance agent. If your insurance is through your job, enlist help from your human resources department, since the company as a whole has more leverage than you do as an individual.
3. Appeal, appeal, appeal. Just as Doctor David did for his patient, this is what you'll need to do for your family member -- in partnership with the doctor, if possible. Have the doctor write a letter explaining that she ordered the treatment and why it was necessary. If the grounds for refusal to pay was that the treatment was "experimental," enclose articles or studies showing that that procedure is being used elsewhere to treat the condition it was recommended for.
4. Get everything in writing. As much as possible, use e-mail and letters when dealing with an insurance company, because that gives you a written record of what was said. If you call, take thorough notes, and ask at the beginning of the conversation for a direct number for call-backs if necessary. Also ask the person you're speaking with to keep a record of the phone call and put it in your file.
5. Keep records of names and titles. Get a first and last name and title every time you have a phone conversation with anyone at either the insurance company or your doctor's office.
6. Keep all records for three years. Don't throw anything out, even after a claim is paid. You never know when a new but similar issue will come up, or whether you'll discover down the line that another mistake was made.

Sometimes it's also necessary to enlist the help of a lawyer, if nothing else to draft your letters on official letterhead. We'll tackle this topic in a future post. In the meantime, if you have stories to tell or questions to ask about making insurance companies pay up, please share.