Do patients have to pay for clinical trials?
When we speak with patients, we often hear this question: “do I have to pay to participate in this clinical trial?” Typically, patients do not have to pay for clinical trial costs. In some instances, they may have to pay copays and payments toward a deductible if those are part of their insurance plan. It’s critical to review your insurance coverage and understand associated costs before joining a clinical trial.
We take a look at what clinical trial sponsors usually cover and what health insurance may not cover, as well as paid clinical trial opportunities and key questions to ask the research team before signing on.
Do I have to pay to participate in a clinical trial?
Patients generally do not have to pay out-of-pocket costs to be part of a trial. Every trial is different, but the clinical trial sponsor usually pays for all research-related costs and any special testing. However, the patient or their insurance company may be asked to pay for any routine tests, treatments, or procedures that would be required as part of their standard treatment plan.
Before you join a clinical trial, you will receive an informed consent document that spells out exactly what costs will be covered and what you or your insurance company will be responsible for, if anything. Even if your insurance plan does cover care not covered by a sponsor while you're enrolled in a clinical trial, there are potential additional costs. These can include:
Lab tests. Insurance companies are not normally required to cover lab tests that are conducted for the sake of a trial. For example, if the study team conducts a blood test to collect data rather than to check on your health, that test may not be covered by your insurance. However, these tests are typically covered by the sponsor.
Travel costs and other expenses. Patients may also spend money getting to the research site and paying for meals. The sponsor may offer reimbursement for travel and meals.
Your copays and deductible. If co-pays and deductibles are part of your insurance plan, you may need to continue to pay them for your routine site visits. Or, the trial sponsor may cover these costs. If you're considering taking part in a trial, ask the study team what costs you'll be responsible for.
What about paid clinical trials?
Some clinical trials offer payment to participants. This is more common for earlier trials, particularly Phase 1. The amount of payment often has to do with the phase of the trial. Phase 1 trials, for example, pay more (around $2,000 on average) because the treatments being studied are less well-understood. Compare that to Phase IV trials, which offer the lowest average compensation (around $400). Paid clinical trials, compensation for travel, and patient travel services can help make it easier for you to take part in research.
Taking part in a paid clinical trial has pros and cons. While you may like the idea of being paid for your time, early-stage clinical trials typically involve more risk than later-stage trials. The treatment may not have been tested in humans yet, or tested in very few volunteers. Before joining a paid clinical trial, you will have all potential risks explained to you during the informed consent process.
Later-stage clinical trials sometimes offer reimbursement for your trial or, more often, for travel or childcare. Reimbursements aren't always advertised and can vary from site to site, so ask the study team if you're interested in learning more.
By law, clinical trials cannot coerce patients into taking part. When Institutional Review Boards (IRBs) review study protocol and outreach materials, they may approve payment for participation, but it's important that payment not be positioned as a benefit of participating or a reason to participate.
Questions to ask the research team
Before you can participate in any clinical trial, you will be asked to review and sign an informed consent form (ICF), which will explain the potential benefits, risks, and side effects that you may experience while taking part in the clinical trial.
It’s important for you to fully understand what you’re considering committing to, so a conversation with the study site about the ICF is crucial. You can ask the study team as many questions as you would like. We shared 15 questions to ask as you’re evaluating the study and making your decision, but you may want to throw these into the mix too:
- What costs will be covered by the sponsor?
- Will all visits be at this site? What is the name of the site so I can confirm it's within my insurance network if needed?
- Will I be reimbursed for travel, meals, or childcare?
- If any insurance coverage is required, have other patients had issues getting their care covered?
If the study team says that other patients have had issues with insurance coverage, or if you're concerned about your own coverage, consider creating a packet of materials to submit to your insurance provider in support of the trial. The clinical trial coordinator of the study may be able to help you put together a packet that demonstrates why the trial is right for you. Your packet may include:
- Medical journal articles from prior studies that explain the potential benefit of the treatment.
- A letter from your doctor that explains the trial or why the trial is medically necessary.
- A letter from other outside supporters of the trial, such as a patient advocacy group.
It's important to understand the costs you'll be responsible for when participating in a trial, but don't feel overwhelmed; the trial team is there to help. Interested in finding a clinical trial near you? Start your search below.