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The policyholder strikes back

Jerry's hoping his insurance company will relent and pay for a bone marrow transplant.
This will cost about $250-$300,000, if there are no complications. But he's been having chemotherapy -- and one of the injections he's been having weekly for the last 8 mths costs $10,000 every time.

KAI RYSSDAL: You get home one day and there's a letter from your insurance company. It's a denial of your most recent claim -- maybe for the treatment your specialist told you you absolutely need. The same one the insurance company says isn't "medically necessary." Well, take heart. Because Helen Palmer reports from the Marketplace Health Desk at WGBH, a denial is not the end of the story.

HELEN PALMER: Don't just stuff that envelope in a drawer and don't despair. You have rights, remedies and allies.

JERRY FLANAGAN: If you get that mailer and it says the insurance company's not going to pay, call them up, and then there's a five-step process you need to go through to make sure the insurance company's paying what it should.

That's Jerry Flanagan, one of the allies. He's the health policy specialist at California's Center for Taxpayer and Consumer Rights -- which will help you fight a denied claim wherever in the country you are. Flanagan says the most vital step is to document everything -- who you spoke to on the phone when why they said the claim was denied. Next in your five-step program, appeal to the insurance company in writing, says Flanagan.

FLANAGAN: They'll have a process internally that allows a customer to complain and appeal a decision to not pay for either a hospital or a doctor visit.

Let the hospital or doctor know what's going on. You don't want them dunning you for cash the insurance company should be paying. If you're turned down again, Flanagan says it's time for the heavy guns.

FLANAGAN: Most states -- about 42 states in the country -- have an external review process where a regulator, usually a department of consumer affairs, will do an independent review of that decision to deny the claim.

As well as consumer advocates, the states' top lawyers are in your corner.

Richard Blumenthal's the Attorney General of Connecticut.

RICHARD BLUMENTHAL: We advocate for people. We fight for them. And if necessary, we go to court.

Blumenthal says states have clout here -- they license insurance companies -- so the companies listen.

BLUMENTHAL: We've done thousands of these cases and we succeed in more than 95 percent of them -- which is a frightening statistic. Because think of all the people who could and should have come to us to advocate for them.

Typically the attorneys general take on insurance companies in the individual market. Under federal law you can't sue if you get coverage through your job. But you still might be able to get your bills reduced or forgiven. Andrew Cohen of the consumer watchdog the Access Project says for example, hospitals have charity care -- and they can give you discounts.

ANDREW COHEN: Most hospitals, even the for-profit hospitals, consider themselves as charitable institutions and you can almost always get onto a payment plan. :08

But you won't get a deal if you don't ask! Cohen and all the patient allies stress you must fight the denial even though it takes time.

COHEN: Some of these companies rely on the fact that most people don't take that extra effort - and it is extra effort some of my clients say "You know, it's like another part-time job doing this work," but it's always worthwhile.

Sometimes, though, a denial can be devastating - when don't have time.

JERRY BERK: Thirty days is how long they can keep the perfect match.

Sixty-four-year-old Jerry Berk owns a printing company. He's had leukemia since 2004. Despite multiple blood transfusions, round on round of chemotherapy have destroyed his bone marrow. His oncologist said a bone marrow transplant was his best - indeed only hope. They found him a donor - a perfect match. But the insurance company says chemo's the way to go - they've turned down Berk's request three times.

BERK: I was extremely angry, it's like they're playing God with me… and I don't understand that.

Berk's only reciyrse now is a health care attorney. He chose Mala Rafik. She radiates hope and optimism. She says by law, insurance companies must consider individual circumstances.

MALA RAFIK: You want to believe that these are monolithic insurance companies who don't care and are driven by the bottom line, but more often than not they aren't.

Real people handle claims and requests for treatments, says Rafik. They can help you. Be polite, make them your friends. Above all, keep fighting.

RAFIK: The reason why so many claims are denied is because too many people give up. Just don't ever give up.

Rafik says there's a whole network of lawyers like her who'll help - often they work pro-bono. She thinks Jerry Berk will get his transplant. Certainly that's what his wife Nina is begging for.

NINA BERK: I can't see why. I just don't understand why this insurance company will not, you know, give him the chance to live.

In Boston, this is Helen Palmer for Marketplace Money

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