July 30, 2007 - Speak Up!

There was a fine article in yesterday’s New York Times: "Cancer Patients, Lost in a Maze of Uneven Care," by Denise Grady. It highlights the sad fact that, for all the technological wonders we have available to us in this country for treating cancer, the actual delivery of those treatments often leaves much to be desired.

Cancer is a complex disease. Almost always, successful treatment requires not just one doctor, but a team. It also requires patients to become well-informed about their condition, and to participate, along with their physicians, in making treatment decisions. It’s not that the patients know more about medicine than the doctors (we don’t). It’s that, in many cases, there is no clear-cut treatment protocol. Like the scarecrow in the Wizard of Oz – who, when Dorothy asked him which way to the Emerald City, replied by saying, “Some folks go this way, some folks go that way, but other folks go both ways” – sometimes doctors actually say to patients, “I have several different treatments I could recommend, all of which show some track record of success – which one would you prefer?” When we hear such a question from our oncologist, we’ve got to be able to supply an answer. That’s why it’s so important to educate ourselves about the disease.

For patients to be active participants in treatment decisions is sometimes more than a matter of personal preference. It can make the difference between life and death. The Times article tells the story of Karen Pasqualetto of Seattle, who – in her thirties – developed colon cancer. By the time it was diagnosed, her disease had progressed to stage 4, and had spread to her liver.

Karen’s first doctor said her liver cancer was inoperable. There was nothing he could do for her, other than palliative chemotherapy treatments. He told her she had six months to live. Not taking no for an answer, Karen found a new oncologist, who was willing to give her aggressive chemotherapy. It helped. But this doctor, too, considered her a poor risk for surgery. Still refusing to take no for an answer, Karen located a physician at Johns Hopkins Hospital in Baltimore who was an expert on risky liver surgeries. She went to him, and learned that – while he agreed she was not a good candidate for surgery – he thought she was good enough. (Karen had stacked the deck a bit, by – in a blatant bid for sympathy – holding her infant daughter on her lap as she spoke with the surgeon.) After a very involved operation, she was able to return home and live – at least for now – a relatively normal life. Her cancer will likely recur, but already she’s outlived the original life-expectancy predictions.

Karen’s original medical insurance company was only willing to pay for the palliative chemo. If her husband had not moved to a new job – as a mid-level executive with Starbucks – that offered better medical coverage, Karen’s surgery would not have been covered. In that scenario, unless she would have been able to tap friends and family to pay for her care, she would be dead today.

Karen’s care, the Times article says, cost over $400,000. Her original insurer refused to pay it. Because her husband moved to a new job, and because his employer’s medical insurance didn’t exclude Karen’s case as a pre-existing condition, she was able to survive.

Reflecting on the members of a cancer support group she attends, Karen said, “It was amazing to me the different experiences people were having based on what they could afford or who their provider was. I was able to say, ‘If the provider won’t pay, my family will. I don’t care, I’m going for a second opinion.’ ” But, she also knew that not every patient could make such a statement.

Is it worth $400,000 to give a young mother a few more months, even a few more years, to help raise her child? It’s an agonizing question. How can one even put a price cap on something like that? The sad truth is, insurance companies do it every day. It’s all part of the game. In countries with universal health care, it can still be problematic. In those places, it’s the government making the call, not private companies – although, in those systems, at least the playing field is more level, from one patient to another. It’s less of a maze (to use the Times writer’s metaphor).

For us patients, speaking up for ourselves is part of the game too. The proverb’s right: the squeaky wheel gets the oil. Sometimes, something else is also true: it’s the squeaky wheel that survives.