How to Self Advocate When Insurance Says No to Cancer Treatment Coverage

When an insurance company says no to covering cancer treatments, patients can make external appeals, which may help them get the coverage they need.

The first step patients and caregivers can take includes figuring out the type of insurance they have.

“If you have Medicare or Medicaid, for example, there are rights to appeal, but the actual steps that you take are different,” explained Joanna Doran during an interview with CURE®. “So that’s really the first thing that you have to do.”

Doran is the CEO of Triage Cancer and a member of the CURE® advisory board.

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While making an appeal with insurance, it’s important for patients with cancer to engage with friends and family to continue advocating, Doran said.

“It does sometimes require paperwork and making sure that you’re gathering information from your health care team about why the care that you’re receiving is medically necessary, and then compiling that information and sending it in the appeal to the insurance company,” she noted. “So that’s a great time to ask family members and friends to actually help you with that process. It can feel daunting when you're trying to go up against an insurance company to make sure that you're getting access to the care that you need.”

WATCH THE FULL VIDEO ON YOUTUBE: What to Do When Insurance Says No During Cancer

Transcript:

It's actually pretty common, at some point during a cancer experience, for an insurance company to come back and say, we aren't going to cover something. It might be coverage for a screening, it might be coverage for diagnostic testing, it might be coverage for genetic testing or treatment or prescription drugs.

So there are lots of different types of treatment that someone might need where an insurance company might actually say “We're not going to cover that.” And it's really important for people to understand that they don't have to take no for an answer and that they can actually appeal those denials of coverage.

If somebody has private insurance, for example, they have access to both an internal appeal where you go back to the insurance company and say, “Will you reconsider? Will you take a look at this again?” And if an insurance company says no to the internal appeal, they also have the right to an external appeal, where you get to go outside the insurance company to see if that external, independent entity thinks that it's medically necessary for you to get access to that care that's prescribed by your health care team. So that's a really valuable consumer protection, but unfortunately, no one knows about that external appeal.

In fact, 99.9% of people who experience denials of coverage don't appeal, even to the first level of appeal. This is where the advocacy community fought hard for consumer protection, but no one actually knows about the protection, so they're not getting to take advantage of that benefit. And about 50% of the time, if someone does file an external appeal, they're actually successful. It's one of those protections that actually works in favor of patients if they know about it.

Transcript was edited for clarity and conciseness.

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