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DIANE SAWYER (ABC NEWS): (Off-camera) All right. We are back with our series “GMA Gets Answers.” We keep hearing these stories and we keep weighing in about people in battles with their insurance companies, whatever their doctors have said. And Chris Cuomo is back with another story this morning.

CHRIS CUOMO (ABC NEWS): (Off-camera) Now, we’re taking this very seriously. As you all know, part of our job is to get answers about these companies, and we will do that. But another part of the job here is to let you know about potential problems with health care. Experimental drugs. These are something to think about. Often, FDA approved drugs that are used to treat illnesses other than their original design. But here’s the issue, insurance companies can limit the practice, especially on expensive drugs. And when that happens, a patient can be left with nowhere to turn.

(Voiceover): Fifty-seven- year-old Mary Casey hoped that retirement would be the beginning of a new life with her family.

MARY CASEY (CANCER PATIENT): Live for a long time and meet all those other grandchildren. That’s my goal.

CHRIS CUOMO: (Voiceover) But instead, she began the fiercest battle of her life, adenoid cystic carcinoma, a sinus cancer so rare, there are no FDA-approved drugs to treat it.

MARY CASEY: I pretty much lost control. You lose control when you have cancer.

CHRIS CUOMO (Voiceover): Despite surgery and months of radiation, the aggressive cancer spread to Mary’s lungs. Doctors told her that perhaps her best hope was in a popular cancer drug called Tarceva.

MARY CASEY: It’s definitely a drug I need because it’s one of the few chances that I have to keep my cancer stable.

CHRIS CUOMO (Voiceover): But when Mary went to fill her Tarceva prescription at the pharmacy, her insurance company, Coventry Health Care of Kansas, denied coverage of this drug.

MARY CASEY: Are you saying they didn’t authorize it?

PHARMACIST (MALE): Yeah. They didn’t authorize it. It requires authorization.

MARY CASEY: And they said, ‘We’re not gonna pay for Tarceva because in your case, it is considered experimental.”

CHRIS CUOMO (Voiceover): It’s the keyword often buried in the fine print of insurance policies, experimental. And who decides what’s experimental? You guessed it, the insurance companies.

MARY CASEY: ‘Dear member, this request is not approved.”

CHRIS CUOMO (Voiceover): Tarceva is FDA-approved for other cancers. But her insurer, a company that made $2.3 billion in profit last year, said it hadn’t been proven effective for her disease. Health care watchdog Jerry Flanagan is critical of this insurance industry practice.

JERRY FLANAGAN (FOUNDATION FOR TAXPAYER AND CONSUMER RIGHTS): Insurance companies broadly look at ways to deny coverage. One of their favorite strategies is to call the treatment experimental so that they can deny access and keep the premiums and profits for themselves.

CHRIS CUOMO (Voiceover): And there is big money at stake.

MARY CASEY: I said to the pharmacist, ‘If I pay for this myself, how much would it cost?” And she said, ‘$4,602, for one month.”

CHRIS CUOMO (Voiceover): And there was more ammunition coming at Coventry. Casey sought a second opinion from cancer specialist Dr. Edward Kim at MD Anderson Cancer Center in Houston. After his examination, Dr. Kim also recommended Tarceva as the best treatment for Mary.

DOCTOR EDWARD KIM (MD ANDERSON CANCER CENTER): I’ll write you a prescription for Tarceva and you can drop it off at the pharmacy.

CHRIS CUOMO (Voiceover): And that wasn’t all. Dr. Kim went so far as to write Coventry Health Care this rare letter pleading with the insurer to cover the drug.


CHRIS CUOMO (Voiceover): ‘Tarceva has shown promise in other tumor types. My preference would be for Mary Casey to start Tarceva,” he wrote. Mary’s cancer is so rare, less than 1,000 cases diagnosed a year, doctors say it’s unlikely there will ever be any large studies proving it works in her cancer. But doctors also say they’ve seen real evidence that it can work, like Angie Schacher.

ANGIE SCHACHER (CANCER PATIENT): Come on. I’ve got clothes for you to put up.

CHRIS CUOMO (Voiceover): This 36-year-old mother of four lives only one hour from Mary Casey. She also has the same rare cancer. Her doctor also prescribed Tarceva. Strikingly similar medical cases with one major difference, their insurance policies. Angie’s insurance provider, Aetna, had no problem covering Tarceva because her policy covered oral cancer drugs. Whether the drug was experimental or not wasn’t even an issue.

ANGIE SCHACHER: They have been wonderful. I have not had any problems at all.

CHRIS CUOMO (Voiceover): She’s been on Tarceva for a year now and her cancer has stabilized.

ANGIE SCHACHER: It has helped me. It has stabilized the nodules. Oh, I go 100 miles an hour. We just go non-stop.

CHRIS CUOMO (Voiceover): Coventry Health Care denied our repeated requests for an on-camera interview, but in an e-mail to “GMA” stood their ground saying, ‘Since Tarceva is not FDA-approved for Mrs. Casey’s type of cancer, and there are no current clinical trials evaluating the use of Tarceva for Mrs. Casey’s cancer diagnosis, it’s not appropriate to authorize a treatment for which safety and effectiveness of the treatment have not been recognized by the FDA.”


CHRIS CUOMO (Voiceover): Coventry defends its definition of experimental saying it relies on, quote, ‘evidence-based medicine” and is following the law. But it turns out that Coventry, like all insurers, has the ability to approve certain off-label treatments for other diseases, many do.


CHRIS CUOMO (Voiceover): One study found that 20% of all prescriptions are written to treat illnesses they are not FDA-approved for. Insurance companies often approve those claims with no problem.

JERRY FLANAGAN (FTCR): Unfortunately, we just have lack of oversight in terms of what an insurance company can call experimental. And it isn’t ’til a patient complains that lawmakers review these cases.

CHRIS CUOMO (Voiceover): With the clock ticking for Mary, seven months into the battle against her insurer, that’s exactly what she hopes to do.

MARY CASEY (CANCER PATIENT): I am not the only American in this boat. I don’t want the insurance company deciding my treatment. I want my doctors deciding my treatment.

DIANE SAWYER (ABC NEWS)(Off-camera): Well, this is it, the insurance company overruling more than one doctor, including a doctor at MD Anderson saying that she should have this drug?

CHRIS CUOMO (ABC NEWS)(Off-camera): Yeah. And if you noticed, they didn’t even mention doctors in their statement about what determines experimental for them. Who decides your care, the doctor or the insurance company? It’s a fundamental problem.

DIANE SAWYER: And again, somebody very near her with similar cancer, is getting the drug because Aetna says okay. So Aetna says okay but the $2.3 billion profit Coventry says no?

CHRIS CUOMO: Right. It’s not a money, and, it’s not a money issue. And that’s why these stories are so important. That’s why we’re staying on it. We’re gonna follow this one and follow many, many more.

DIANE SAWYER: Send us more and let’s hear it for Aetna. We’ll take a break.

Consumer Watchdog
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