Column: Advice for a Serious Diagnosis

Q. I have been diagnosed with a serious illness. Where do I get information on treatment costs and options?

A. Experts advise that patients take a number of steps to ensure the best care possible.

First, confirm the diagnosis to make sure it wasn't a testing or clerical error. Next, educate yourself on your disease or condition.

The Internet offers vast amounts of information, but experts caution to rely only on reputable sources. Try http://medlineplus.gov, which is run by the U.S. National Library of Medicine and the National Institutes of Health, or Web sites run by advocacy groups such as the American Heart Association or American Cancer Society. Consumer Reports publishes a medical guide available on its Web site.

Talk to your primary care doctor about the diagnosis and ask him or her to coordinate your care, help locate specialists and determine which treatments your insurer covers. A comprehensive record of your tests, treatments and doctor visits is crucial, and having that information at your primary care physician's office makes sense. However, patients should also keep their own records.

Some experts suggest calling your insurer directly to determine what your plan covers, regardless of whether your doctor offers help. That is essential if you don't have a primary care doctor, said Mohit Ghose, spokesman for America's Insurance Health Plans, a trade group. He said some plans may offer services to help coordinate your care. Ghose added that patients shouldn't despair if the best treatment center for their condition is far from home; some plans will send patients to specialized hospitals away from their local communities.

Insurers as well as advocacy groups are good sources for information on specialists and hospitals. In selecting a doctor, find out how much experience he or she has in treating patients with your condition. You can simply ask. If the doctor seems uncomfortable or annoyed by the question, it may be best to find a different physician, said Pat Sodomka, senior vice president for patient- and family-centered care at the Medical College of Georgia Health System, an academic medical center in Augusta, Ga.

Sodomka said it is especially important when you are seriously ill to have a physician willing to discuss treatment options and care.

She also suggested having a good friend or family member as an advocate who will help you coordinate your care. Joining a support group with patients with the same condition is also helpful as a source of information and strength, Sodomka said.

Experts also recommend getting a second opinion to discuss the diagnosis and treatment options.

If your doctor selects a treatment regimen that your insurer declines to cover, there are appeal processes at insurers, Ghose said. If the dispute still can't be resolved, many states have programs allowing you to bring your case before an independent review board. Rules vary from state to state. The Kaiser Family Foundation has a report on the various state options at http://www.kff.org/consumerguide/7350.cfm.

Patients without insurance or inadequate coverage should seek financial aid through the social services department at the hospital where they are receiving treatment. Drug companies also have programs to help patients with the cost of medicines.