How to Find a Trial

By Ian K. Smith, M.D.

"Doc, my wife's breast cancer has come back and spread to her bones." My friend's eyes filled with tears when he spoke those chilling words. Like millions of other cancer patients, his wife had been treated--successfully, she thought--for one cancer only to discover within a year that it had spread to another part of her body and was growing even more fiercely. Cancer recurrence is never a good sign, but it doesn't mean you have to give up hope. Over the past decade, powerful new treatments have been developed to fight the most stubborn cancers. Most, however, are still being tested in so-called clinical trials, and getting yourself enrolled in one takes some doing.

Clinical trials are research studies on human patients to test the safety and effectiveness of new treatments. There are hundreds of clinical cancer trials under way, involving thousands of patients. What most people don't realize is that the scientists who conduct these studies need test subjects almost as badly as the subjects need treatment, and that lately the scientists have been running short of willing participants. At a conference on clinical trials held recently in Alexandria, Va., researchers trying to devise strategies for signing up more patients noted that one of the reasons there has been so much progress in treating pediatric cancers over the past 20 years is that 60% of all children with cancer are enrolled in some kind of trial. With adults, enrollment falls off dramatically, to only 2% to 3% of eligible patients.

Why is this? Partly it's owing to patient misconceptions. "Patients are concerned if they enter a clinical trial that they may be part of the unlucky group that gets the placebo or 'dummy treatment' and not the real medicine," says Dr. Bob Comis, president of the National Cancer Cooperative Groups. They think the placebo group gets no treatment at all, when in fact it gets whatever is considered the best current standard of care.

Cost shouldn't be a consideration. Most clinical trials are free to patients; some even pay their subjects. Insurance companies in the past have been reluctant to cover the nonexperimental part of the treatment, but they are starting to come around.

Now it's true that research scientists don't always have the best bedside manner, and sometimes they unnecessarily keep patients in the dark. And the consent forms are often so encrusted with medical jargon that some patients joke they would rather take their chances with cancer than fill them out.

Assuming these problems can be overcome, how can you find the right clinical trial for you? First, ask your physician if there are any under way or coming up for which you might be eligible. If you have access to the Internet, you can log on to the National Cancer Institute's website www.nci.nih.gov and go to its Clinical Trials section. It has an easy-to-use search tool called the PDQ that will help you locate the trial nearest you. If you don't have a computer, you can call the National Cancer Institute directly at 800-4CANCER.

If that's too much of a bother, there are services that will, for a fee, gather data about trials and help get you enrolled. One caveat: there's plenty of good information out there, and you might end up paying for something you could get free. Before signing any papers or receiving any treatment, be sure to consult your physician.

For more information on cancer clinical trials visit www.alphacancer.org You can also e-mail Dr. Ian at ianmedical@aol.com