02/22/04

BOULE L3 Boule: HMO disallows surgical procedure doctor recommends, patient opts for L1 A my Hanlon has a great laugh. She laughs a lot these days.

It's not just that the 52-year-old Portlander has beat back cancer three times.

That's a good reason to be happy. But Amy has another reason: Because of her experience with cancer, she, with the help of Oregon legislators, has secured a victory that will help future breast cancer patients in Oregon avoid the fight Amy had to wage with her health insurance provider.

Today Amy is happy and healthy. She may be living proof that she who laughs, lasts.

There is no good time to be diagnosed with cancer, but it's especially hard when you're just starting a family. Amy's daughter was just turning 2 in 1996 when Amy found the lump in her breast.

It was malignant. Amy had a lumpectomy, radiation and chemotherapy. "I got through it with support from family and friends, and stayed fine until several years later, when I found out I had ovarian cancer."

The signs of ovarian cancer are subtle; often the disease is not caught until it's well advanced. Amy was lucky; hers was caught in the early stage.

Amy had more surgery and chemotherapy. Again, her hair fell out. "I've had more hair styles than you can believe," she says with a laugh.

But she wasn't laughing after the ovarian cancer recurred and then tests in 2001 revealed she had a gene that predisposed her to breast and ovarian cancer. "I thought, 'Now I know there's a little ticking time bomb there.' Before, it was random. You don't know why you got cancer." Now Amy realized, "It's not because I ate too little broccoli." She laughs when she says it, but then she adds, "On the other hand, there's no getting rid of it. It's ticking away."

Amy's doctors recommended a double mastectomy. She started exploring the options offered by her family's HMO.

Amy wants to emphasize that her care providers are "wonderful, empathetic people. . . . I have fabulous doctors." It was her struggles with the HMO bureaucracy that made Amy angry and then motivated her to change Oregon law.

After Amy researched breast reconstruction techniques, she realized her HMO "was not offering all options available."

Amy had learned there were problems with saline implants. The other common alternative in the United States, the "Tram Flap reconstruction," relocates abdominal muscle to rebuild the breast.

But Amy had discovered another technique, the "Diep Flap" procedure, which would not require displacement of her abdominal muscle. Amy and her HMO doctor decided the longer, more complicated Diep Flap would be the best procedure.

But her HMO disagreed, saying no doctor in Oregon did the Diep Flap procedure in 2001, and it would not authorize Amy going elsewhere. "They said the Diep Flap was, in their minds, experimental and new." Amy put in another request. Again, it failed.

Dr. Alex Keller, a New York surgeon who has pioneered the surgery in the United States, disagrees with the HMO's contention that the Diep Flap procedure is new or experimental. "It has been out nine or 10 years," he said last week by phone. The procedure is commonly done in Europe. It takes longer, Keller says, but "it leaves the muscle on the abdomen where it belongs. The patients recover more quickly, they leave the hospital more quickly, they have less pain than the traditional procedure. This has all been documented scientifically and published."

Amy might have been less angry if she hadn't discovered, soon after, that her HMO did offer the Diep Flap procedure to its members in California. "The reason . . . was because the law in California states women have a right to have the decision about the reconstruction (technique) made by their physician," not their medical insurance provider. "It seemed hypocritical to say it was new and experimental, and that they were offering the 'standard of care' to me, when they were providing something newer in California."

At this point, Amy had to make a decision. Should she find a doctor and pay for the Diep Flap surgery herself? Or should she continue to try to persuade her HMO?

"The bottom line was they were within their legal rights," Amy says. "It was hard enough to go through this without having to battle the insurance company. I did not want to wait and wait and go through the emotional ups and downs. . . . I was pretty sure it wasn't going to come out differently."

Amy flew to New York to be examined by Keller, who determined she was a good candidate for the Diep Flap. Now the only thing keeping her from having the procedure was money.

"I felt strongly this was the choice I wanted to make in terms of my health and quality of life," Amy says. "But it was a hard decision because I'm not a wealthy person." In the end, Amy's husband and her mother told her to set aside the issue of money and make the decision based on what was medically best for her.

So in the spring of 2001 Amy flew to New York and had a double mastectomy and breast reconstruction using the Diep Flap procedure. "We paid a big chunk and will be paying for a long time," Amy says.

The surgery went smoothly. Amy was back in Oregon two weeks later.

But she still was angry at her HMO. She decided "to channel my emotions in a more proactive, positive way." She decided to try to change the law in Oregon.

Amy contacted Rep. Diane Rosenbaum, who invited her to a meeting of the Oregon Women's Health and Wellness Alliance. After hearing Amy, the alliance decided to push for a law to give patients and their doctors the right to decide what breast reconstruction technique was optimal.

"It was such an amazing democratic process," Amy says. "I was reminded . . . you can have a voice."

"People tend to think one person can't have any effect on major issues like this," Diane Rosenbaum says. "But Amy's story, her determination, her courage in coming forward to cause something to change so thousands of men and women will not have to go through what she did."

Thanks mostly to the efforts of Rep. Rosenbaum and Sen. Vicki Walker, with bipartisan support, House Bill 3654 passed the House and Senate, was signed by the governor and went into effect Jan. 1. "When we voted on it," says Rep. Rosenbaum, "I called it 'Amy's Law.' "

Amy has a parchment copy of the law, with all the signatures affixed. She's going to frame it.

"The bottom line that angered me was there were options out there that were not being presented to Oregonians because of the law," Amy says. No more. Thanks to her, breast cancer patients and their doctors will now choose the reconstruction technique that's best for them.

That makes Amy proud and very happy. "Now I just hope they'll take advantage of it," she says.