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CNN Saturday Morning News

Mother Battles Insurance Companies Over Sick Son

Aired May 26, 2001 - 08:39   ET

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
KYRA PHILLIPS, CNN ANCHOR: As a hospice nurse, Marilyn Azevedo has seen how disease can ravage a person's body and their spirit. On a daily basis, she was dealing with life and death. But she never imagined her next patient would be her 16-year-old son. Fighting for Andy's life was a battle within itself. Fighting the insurance agency was an unexpected battle. "Defending Andy: One Mother's Fight To Save Her Son From Cancer and the Insurance Agency" is Marilyn's book and she's in San Francisco this morning to share her story. Nice to see you, Marilyn.

MARILYN AZEVEDO, AUTHOR, "DEFENDING ANDY": Thanks for having me.

PHILLIPS: Absolutely. Why don't we start with Andy, and his cancer was quite rare, wasn't it?

AZEVEDO: Yes. When Andy was diagnosed at 16, he just had what looked like a blood blister under his finger and when we went to the doctor, they couldn't figure out what it was. It took three weeks to decide that it was clear cell sarcoma, which was only known to 511 people in the world before Andy had been diagnosed. And what that did was make it very difficult to define a treatment for that cancer.

PHILLIPS: So here you were battling with his life, he was battling for his life and then comes the insurance company and what ensued from there. Explain what happened.

AZEVEDO: Well, we went to Stanford for Andy's treatment because that was given to us as the place that they could help. What happened was that we went through all the treatments, the surgeries, the amputations of his finger and then found out about six months later that they hadn't paid any of the bills. What we found out was that I hadn't followed the very narrow dictates of the law and they had denied everything.

What happened is that it took the energy that I was expending to fight for Andy's life and made me redirect that to get his bills paid. That was the first inkling that there was really a problem.

PHILLIPS: Marilyn, why weren't the bills being paid?

AZEVEDO: Because I hadn't done it correctly. It was a real heads up that they had control and that I had to follow their dictates in getting everything done. PHILLIPS: Now, when these bills weren't paid, was there ever a time that lifesaving treatments or services were blocked and Andy, you know, couldn't receive them?

AZEVEDO: No, not for him, although we had a friend whose son's chemotherapy was stopped when her insurance wouldn't pay. But for us it continued on. We went ahead. When a bone marrow transplant was offered as a means for cure our insurance company took until the day we were leaving for the consultation to finally approve that consultation. But the problem was when we got to Boston to the Dana Farber Cancer Institute, they'd already sent a letter preceding our visit telling them that they would not pay for any chemotherapy, high tense, high intensity chemotherapy for Andy's bone marrow transplant.

PHILLIPS: What did Andy say to you, Marilyn?

AZEVEDO: He couldn't believe it. He said, you know, mom, we're doing everything right. We've paid our bills. Our premiums are paid. We're entitled to this. It's the only thing that's going to save my life.

PHILLIPS: So here he was, you know, battling for his life and he decides to join you on a trip to Washington, D.C.

AZEVEDO: Yes.

PHILLIPS: Tell me what you guys did.

AZEVEDO: Well, after talking to other parents, we found out that children or adults who had been cured of cancer were denied the ability to purchase health insurance after they were cured. So we went to Washington to lobby for health insurance reform in 1989 and during that time we met with many of the representatives in Congress and in the Senate. Sadly, in 1996, five years after Andy died, so that he didn't get a chance to see it, President Clinton did sign a bill into law that now makes it illegal for HMOs to deny enrollment to people with preexisting conditions. Andy would have been really proud of that.

PHILLIPS: Oh, I'm sure he knows. He's looking down and proud of you, Marilyn. Bottom line, what do you think is wrong with health care today? What did all of this tell you? What does it continue to tell you?

AZEVEDO: You know, I was in, I was nursing when HMOs started. I thought it was a great idea. It's just gone wrong. And the problem is that HMOs, the bottom line is power and money. They are controlling doctors, hospitals and patients and the bottom line is their profit.

PHILLIPS: What can people do now, Marilyn, that maybe in your situation, the situation that you were in, to better understand their insurance company?

AZEVEDO: What they need to do is read their insurance policy. I know that it's difficult. They need to read and understand it. In the open enrollment period when everybody has a chance to change insurance policies with their employers or if you're buying your own insurance policy, you need to buy the broadest health insurance policy that you can. A point of service or a preferred provider plan or a plan that has a large deductible, that gives you out of network choices for more doctors, more hospitals and while you're in an HMO, you need to buy one with the largest deductible and you need to understand that you are not on their bottom line.

You have to go by what they say but you have recourse. You can demand a mediation hearing. At this point, you can't sue an HMO except very few people in this country, so that if something's done wrong, you have no recourse. One of the things that really needs to happen is that President Bush needs to sign the Patients Bill of Rights and it can't be the bill of rights that he's supporting at this time because that bill of rights form has that HMOs paying and selecting a committee that would decide if there were cause for a patient to sue.

Ted Kennedy now will be in a position of more power in the Senate and his bill with John McCain really gives the people in this country what they need to have. They need to be able to have an HMO accountable for their actions.

PHILLIPS: Marilyn Azevedo, no doubt you will be on the White House steps knocking on the door fighting for more rights.

Once again, the book "Defending Andy: One Mother's Fight To Save Her Son From Cancer and the Insurance Industry." Marilyn, thanks so much for sharing your story. You're a strong woman.

AZEVEDO: Thank you very much. I appreciate it.

PHILLIPS: All right.

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