Even if you're not rich or well-connected, you can find leading-edge treatment when it matters. And it could well matter if your condition is rare or if few doctors have developed expertise in treating it.
For starters, be Internet savvy - and pushy. Here are some tips for getting what you need:
Be open to the hospital your insurance plan recommends.
Insurers want to keep costs down, and one way to do that is to minimize costly complications. So they try to contract with institutions that have the most experience and the best outcomes. Even HMOs contract with outside centers of excellence for some rare disorders when their own physicians lack unique expertise.
"This whole notion of centers of excellence used to be based on gestalt and individual recommendations," says Dr. William Roper, dean of the medical school and chief executive of the health-care system at the University of North Carolina. "It's becoming much more data-driven and evidence-based."
To determine the "best," arm yourself with numbers.
If the doctor, or hospital, you want has more experience than the one your insurer has chosen, show your insurer the numbers. A surgeon who has done a procedure a few hundred times will have better results than one who has done it two or three times. "There's a growing body of evidence that says that volume matters," Roper says.
The only way to find out is to ask, so don't be shy about asking physicians how many times they've done the procedure or treated the condition.
And be specific. A cardiac surgeon who has done hundreds of heart bypasses is not necessarily an expert in valve replacements.
Get recommendations.
The less common the disorder, the fewer the institutions that will have deep experience with it. But it's just those institutions you want to find. Each time you talk to a provider, don't end the conversation without asking who else has experience with your condition or which institutions are known for treating the disease. Keep following the chain of recommendations to see if one or two names are consistently repeated.
Do your homework.
Track down statistics and studies as tailor-made to your condition as possible. Search for articles at the National Institutes of Health's free archive of medical journals. Be as specific as possible in your search. For example, don't type in "brain cancer." Use "malignant glioma," "brain tumor" and "left parietal lobe."
Make appointments.
When you find a doctor or hospital doing research into your disease, call the physician or the institution. Large academic centers all have physician referral departments set up to connect patients with the appropriate physician. Your insurance company will cover a second opinion, and going to a large center for that second opinion can be the entryway to excellence.
Whatever your disease, go online.
Look for Internet-based support and advocacy groups. For example, the National Multiple Sclerosis Society's Web site has a page on recent research into the disease, who is doing it and where.
Check out the disease advocacy group's chat rooms. Patients who have gone through what you're facing have a lot of first-hand advice about what they've done, where they've gone and how it turned out. In the absence of good national quality and outcomes measures of doctors and hospitals, the personal experience of your peers is invaluable.
But beware of sites trying to sell something or promoting a treatment not available in any academic center. "Any Internet site that sounds too good to be true usually is," says Dr. Robert Adler, vice chairman of pediatric medicine at Childrens Hospital Los Angeles.
Be realistic.
Don't think you can find a cutting-edge technique developed by one surgeon, then ask your own doctor to do it. "That's like going to a restaurant with a recipe from another restaurant and asking the kitchen to make it," Adler says. You could ask the doctor who developed the procedure if he or she has trained any others. If so, find out where they are practicing and how experienced they have become. That process of training others, and having them fan out, is how once-unique techniques spread, but it takes a lot of time.
Be prepared to fight.
Use the ammunition you've accumulated through research. Fights with insurance companies can be frustrating and drawn out, so if you're also fighting disease, you might need to enlist a spouse or friends to make phone calls and write letters, to the insurer, to legal aid societies or to a private lawyer.
If you're wrangling with Medicare, the Medicare Rights Center might be able to help fight a denial.
Get your doctor's support.
Whether you're facing Medicare or an insurance company, your chosen doctor is your best ally. He or she is the one best armed with numbers to make your case to the insurer.
For example, surgeons at Johns Hopkins Medical Center published a study in 1995 of a surgical technique, called a Whipple procedure, that can help some pancreatic cancer patients. The study examined all 501 cases of pancreatic cancer in which the procedure was used between 1988 to 1993 throughout Maryland.
It found that 54 percent of Whipple procedures were performed at Johns Hopkins. The remainder were performed at 38 other hospitals. The in-hospital death rate at Hopkins was 2.2 percent, compared with an average of 13.5 percent at the other hospitals. But what probably got the attention of insurance companies was that the cost at Johns Hopkins was $26,204, compared with an average of $31,659 at other hospitals.
Even if there isn't such incontrovertible, published proof supporting your decision, your chosen physician probably will have other numbers.
If you lose the fight and continue to be convinced that where you go matters to you, be prepared to shell out. Whether it's a higher co-payment for going out of network, or taking on the entire cost yourself if you can afford it, your preference might be important enough to you to pull out your checkbook or credit card.
Make a choice.
Finally, try not to second-guess your decision. "No one really knows what the outcome will be," Adler says. "Make the best decision you can in the time you've got, and then don't look back."
