Myth #1: Patients who are involved in clinical trials are treated like guinea pigs
FACT: Clinical trial patients often report that they have been treated with the utmost care, compassion and respect during their clinical trial treatment(s). Also, clinical trials are highly regulated and many safeguards have been put into place to protect patients and their best interest.6
Myth #2: Some patients receive placebos and some receive the real treatments
FACT: All patients who enroll in a clinical trial will receive the best treatment available to treat their type and stage of cancer. Placebos are very rarely used in cancer clinical trials and if they are, they are given in addition to the current standard of care and the patient is told that it is happening.4
Myth #3: Clinical trials are unaffordable and/or not covered by insurance
FACT: Volunteers for clinical trials rarely have to pay any costs related to participating in the trial. There are two types of costs associated with a clinical trial: research costs and patient care costs. Research costs are those associated with conducting the trial, such as data collection and management, research physician and nurse time, analysis of results, and tests performed purely for research purposes. These costs are usually covered by the sponsoring organization, such as the biopharmaceutical company, and are not the patient's responsibility. Patient care costs are costs that are not covered by the research sponsors doing the clinical trial, such as the costs for routine care including doctor visits, hospital stays, clinical laboratory tests, x-rays and other clinical trial-related activities that would be done even if you were not in the trial. Many health insurance carriers will cover patient care costs, but you should ask the clinical trial research team which costs will be your responsibility and also check with your health insurance carrier about the coverage they provide for clinical trial participants before making the decision about participating in a clinical trial.6
Myth #4: Clinical trials are only for people who have tried all other treatments and have run out of options.
FACT: Understanding the phases described above can help to answer this question. In some cases the answer may be yes – if nothing else is working a Phase 1 trial may help you further research for others with your disease (and has a small chance of making a difference for you as well.) But usually, people participate in clinical trials for other reasons. Cancer clinical trials are available for people at all stages of their disease.5
Myth #5: Once a patient agrees to be involved in a clinical trial, they are required to follow through to the end.
FACT: Clinical trials rely on voluntary participation. You are free to leave a clinical trial at any time, even after you have signed an informed consent and received the investigational drug or placebo. However, you should always let the clinical trial team know before you decide to leave the trial because some medicines cannot be stopped safely without a doctor’s help.6
Myth #6: If there is a clinical trial available that might help me, my doctor will definitely tell me about it.
FACT: Your doctor may not know about all available clinical trials that might benefit you. The National Institutes of Health has an online database that you, your family or doctor can search to find appropriate trials: www.clinicaltrials.gov. Alternatively, it’s often worth making contact with a patient advocacy organization to help you navigate the process. Many of them have tailored services that can help you with your search and help you understand the options.
If you are thinking about participating in a clinical trial and have additional questions, you should talk to your doctor or a patient advocacy organization for your disease or condition.6