Clinical trials are important both for your treatment and for the purpose of advancing our knowledge about drugs and treatments against prostate cancer. The treatment of advanced and recurrent prostate cancer has made significant steps over the last 2 years, but without the active participation of all of us our progress will be slowed, perhaps even stopped!
Many of the fears about clinical trials are based in myths, not facts. Learning about these myths is important, so I am dedicating this post to debunking some of the more common myths.
Myth: Participants in clinical trials are just guinea pigs.
Fact: When surveyed, 97% of people who participated in a clinical trial reported they were treated only with dignity. They also reported that their care was very good.
Myth: Participants in cancer clinical trials can receive sugar pills while their treatment needs are ignored.
Fact: Participants in cancer trials receive the best care. Those individuals who do not receive the investigational treatment do receive the current standard of care treatment. Participants who need treatment never do not receive treatment. Those who do receive the investigational treatment have an opportunity of receiving cutting edge treatment not otherwise available.
Myth: Healthcare insurance will not cover the costs associated with clinical trials.
Fact: Many insurers cover the costs of a cancer clinical trial. Many states in the United States have laws that require that insurers cover these costs. Check with your insurer to be sure that you will be covered.
Myth: Medicare does not cover the costs of a cancer clinical trial.
Fact: Since June 2000 Medicare has been covering these costs
Myth: Cancer clinical trials cost more than standard treatment protocols.
Fact: Studies clearly show that for patients in clinical trials routine care costs are comparable to those not in trials.
Myth: To participate in a clinical trial you need to be located close to a major hospital facility.
Fact: Local hospitals and even doctors’ offices are often the sites for trials.
Myth: Informed consent is for the protection of the researchers.
Fact: Informed consent, which is always required to be given to all clinical trial participants, protects both the researcher and the trial participant. The consent guarantees that the participant has all the information about the trial, both the upsides and the risks. Informed consent allows participants to make informed choices about their care as well as guaranteeing that the participant knows all of their rights.
Myth: Once a participant signs an informed consent they must stay in the trial.
Fact: This is just not true. A participant always has the right to withdraw from a trial at any time. There are no exceptions to this rule, you always can withdraw for any reason.
Myth: Once I agree to participate in a trial I will lose my ability to work with my doctor or have my concerns responded to by the medical personnel.
Fact: The research team has a duty to keep you informed and to make sure that you understand all the information. They have a duty to answer all of your questions. You will have a key contact person who will work with you throughout the trial.
Participating in trials is vital, both for your treatment, and to continue our forward movement in the treatment of prostate cancer.
Joel T. Nowak, M.A., M.S.W.