When meeting with a doctor following a cancer diagnosis, the discussion almost always includes available treatment options. Often left out of those conversations, however, is the option to join a clinical trial. In fact, fewer than 5 percent of cancer patients participate in clinical trials, and less than half of eligible patients are told about the possibility of joining a clinical trial. For many patients, these are missed opportunities to access new treatments that may be better than current therapies and would not otherwise be available, and in some cases are provided at no cost to the patient — an important factor given the high cost of many cancer drugs.
Deciding on the right treatment can feel overwhelming, and that’s especially true when considering participation in a clinical trial. Here is information that will help with that process.
Who should consider participating in a clinical trial? If available treatments offer a low chance of success and/or have severe side effects, a clinical trial may be a good option. That said, participating in a clinical trial is also a way to contribute to the advancement of science, which may factor into some people’s decisions. It’s important to keep in mind that not all patients will qualify to join a study. Each study has a set of criteria that study subjects must meet to be eligible for participation, which may include age, gender, type and stage of disease, and current and prior medical conditions.
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Is it safe to use an experimental treatment? There are risks associated with any treatment. However, the safety of an experimental medication is thoroughly tested in pre-clinical trials, which don’t include human participants, before proceeding with patient-based studies. Patients are also rigorously monitored during a clinical trial for any unexpected side effects. All known risks of the treatment must be clearly spelled out during the informed consent process that is required of all clinical trials. This includes both a written document and a discussion with the researchers to go over the information and answer any questions a potential participant may have. It’s important to discuss risks and possible side effects with your doctor and understand how they compare to standard treatments. If you do join a trial and find the side effects intolerable, you can opt out of the study at any time.
What type of commitment will be required if I join a clinical trial? Participating in a clinical trial may require more time, travel and interventions than if you were to use a standard treatment. It can mean more doctor visits, test procedures like blood tests and even hospital stays. While this may seem onerous to some, being closely followed has definite benefits since you’ll be receiving a high level of medical attention and care throughout the study. Requirements of every study differ, so it’s essential you know what will be asked of you and are able to fulfill that commitment before enrolling in a clinical trial.
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Will I be assured of receiving the experimental treatment? There is no guarantee you’ll receive the experimental treatment since many studies include a comparison group that typically receives the best available standard treatment or, in rare cases, a placebo instead. However, a clinical trial will never put your health at risk, so you’ll always receive the optimal care required. In some studies, the comparison group is offered the treatment when the trial is complete.
Are there any costs I’ll have to cover? Many clinical trials provide the drug being tested at no cost to the participant. Ancillary costs (tests, other medications prescribed, doctors’ visits, hospitalizations when needed) are billed to the patient’s insurance. Make sure you fully understand any related costs you may be responsible for, including travel costs, before enrolling in a study.
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How can I find out about clinical trials I may be able to join? You can start by asking your doctor, although physicians not affiliated with a research center may not be aware of available trials. There’s a government website, ClinicalTrials.gov, that includes a database of hundreds of thousands of clinical studies in the U.S. and abroad that is useful but can be overwhelming. For more customized help finding a clinical trial, some advocacy groups provide services. For example, The Leukemia & Lymphoma Society has clinical trial specialists who conduct individualized trial searches for patients based on their specific medical and personal situations and provide lists of possible studies that can then be discussed with their physicians.
Beatrice Abetti, LCSW, is a clinical social worker and leader of The Leukemia & Lymphoma Society’s Information Resource Center, providing highly specialized blood cancer information, education and support for patients and their families. Last year, LLS’s IRC fielded more than 40,000 inquiries and performed more than 6,000 clinical trial searches for patients and caregivers.
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What’s Important to Know About Participating in a Clinical Trial originally appeared on usnews.com
