4. Take Charge
Once you decide what you need, work to make it happen
Be tough. So if you disagree with your doctor's preference because your research has told you it's not the obvious choice, don't automatically give in. "It's perfectly OK to say, 'I've heard some people get a lumpectomy instead of a mastectomy--what do you think of that? What are the pros and cons?'" says Diana Zuckerman, president of the National Research Center for Women & Families. "If the physician gets very defensive and angry, you need a new one," she says. On the other hand, the doctor may take a look at the research you've brought and agree with you. You should keep your mind open, too; the doctor's advocacy for a certain approach might be persuasive. If not, you should agree to disagree, and get another opinion or find another physician.
Even if you and your doctor are on the same page, your insurance company might not be. Health insurers have formularies, for example--prescription medications the insurer will cover for specific conditions. But the approved drugs are rarely identical. Many neurologists, for example, have their own preference among the handful of drugs that treat multiple sclerosis. "You could have insurance plan A that has decided Avonex and Betaseron are great and Copaxone and Rebif are not so great," says Calder. "Two counties over, it could be just the opposite." But your doctor can, and most will, fight on your behalf for coverage of a particular drug. Ask your doctor to write a letter and appeal if your preferred drug isn't on the formulary, she says. Advocacy groups often have templates for the letters to make it easier on the doctors.
You can also appeal if a treatment is denied. Most states have an external review process if your initial appeals are rejected, and about half of the decisions favor the patient. This can be done quickly--often within two or three days in an emergency. (Consumers Union and the Kaiser Family Foundation have a state-by-state guide at www.consumersunion.org/health/hmo-review . Contact the state insurance departments listed for the most current information.)
To be your own advocate through a process that seems to stretch out forever from illness to diagnosis to treatment to follow-up is draining. You may not feel well anyway, and the merry-go-round of specialists and opinions adds more anxiety. "I was exhausted," remembers Weinig. "I'd been to so many doctors." But your health may depend on your taking charge. "You have to decide you're going to manage your case and decide what you're going to do," he says. "Don't be afraid to question and doubt."
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