Cancer Clinical Trials Myths & Facts

Patient fears about experimental treatments, placebos, unnecessary testing, cost of care, and access are among the biggest barriers to enrollment in cancer clinical trials. Many of these fears are unfounded and are strong enough in the general population to slow down the pace of cancer research. Here’s a look at some of the myths that surround cancer clinical trials, in hopes that accurate information will help increase cancer clinical trial participation.

Myth: Cancer patients avoid clinical trials because they are too risky.
Fact: Many patients simply don’t know that cancer clinical trials are a cancer treatment option. In one survey, most of these patients said they would have enrolled if they had known. In cancer clinical trials, patients are watched closely by their doctor. They are also watched by other members of their medical team.

Myth: Clinical trials test treatments of unknown safety and efficacy.
Fact: Generally not. The large majority of cancer patients are enrolled in Phase III clinical trials, which compare the outcome of two or more established alternative cancer treatments. Many of these treatments are considered variations on the current standard of care and are routinely covered outside cancer clinical trials. Studies of treatments in the early stages of human testing are restricted to small networks of institutions that are especially qualified to conduct such studies.

Myth: Cancer clinical trial patients are given sugar pills.
Fact: Patients who join clinical trials are given the best cancer treatment options available or the chance to receive a new treatment being considered. Sugar pills (also called placebos) are rarely used in cancer clinical trials and are never used in place of treatment.

Myth: Health insurance will not cover the costs of a cancer clinical trial.
Fact: Many insurers cover the normal costs of treatment on cancer clinical trials, and many states have mandatory coverage. Check with your doctor or insurance plan to see if you are covered.

Myth: Medicare does not cover the patient care costs of cancer clinical trials.
Fact: Medicare has been covering these costs since June 2000. Generally, cancer treatment and diagnostic trials are covered if they are funded by the National Cancer Institute (NCI), NCI-Designated Cancer Centers, cancer cooperative groups, or other federal agencies that fund cancer research. For up-to-date information on Medicare and cancer clinical trials, visit the federal Centers for Medicare and Medicaid (formerly the Health Care Financing Administration).

Myth: Cancer clinical trials cost more than standard cancer treatment.
Fact: Not necessarily. Studies by groups including the American Association of Cancer Institutes, Kaiser Permanente, Mayo Clinic, and Memorial Sloan-Kettering Cancer Center have found that routine care for patients in trials is comparable to costs for patients not in trials.

Myth: Informed consent is meant primarily to protect the legal interests of researchers.
Fact: The purpose of informed consent is to protect cancer clinical trial participants by giving them information that can help them make informed choices about whether to take part in research. It also makes you aware of your rights as a participant.

Myth: Signing the informed consent document is the most important part of the process.
Fact: Putting your signature on an informed consent document is only part of the process. The heart of informed consent is a participant's ongoing interactions and discussion with researchers and other medical personnel, both during and after the cancer clinical study.

Myth: My doctor knows best; he or she can tell me whether I should participate.
Fact: You are the only one who can decide whether to take part in a cancer clinical trial. Your doctor and the rest of the care team are important and valuable sources of information, but they can only provide balanced information about the risks and benefits of participation. Remember, no one can predict whether the cancer treatment being studied will be successful in your case.

Myth: Once I sign the consent form, I have to enroll and stay enrolled.
Fact: That is not true. You are free to change your mind and not participate. You also have the right to leave a cancer clinical trial at any time for any reason, without giving up access to other treatment.

Myth: I can’t really expect medical personnel to listen to my questions or keep me informed.
Fact: The research team has a duty to keep you informed and to make sure you understand the information they provide and answer any questions. You will be given the name of a key contact person to stay in touch with throughout the trial. Remember, it is your willingness to participate that makes cancer clinical research possible.