Who pays for clinical trials?
Cancer research studies cost a lot of money. Two major sources of this money are the federal government and drug companies. But both the government and drug companies are not allowed to be involved in the actual research in any way. Researchers apply for the money and carry out the study independently. Researchers must report their results, but the federal government or a drug company may NOT get involved in the project or affect the research results.
If you are thinking about joining a study, ask your doctor if there are people who can help you find out what parts of the study will be covered by your insurance. Ask what they will cover and what costs you may have to pay yourself. “The Patient Protection and Affordable Care Act” (ACA) requires private insurers to cover the costs of routine care while you are in an approved research study. This includes items such as hospital visits, imaging, laboratory tests, and medications. Insurance companies are not required to pay for investigational treatments, devices, or services that are for the purpose of research study only. Those might be covered by the research study itself. You can ask the research team to explain which costs would be covered in the study.
If you are on Medicare or Medicaid, find out what costs they cover if you join a research study. Medicare covers these costs:
- Routine care
- New care you may need
- Treatment for side effects and complications
However, there are other costs that Medicare does not cover. To learn more, you can call this Medicare information number: 1-800-633-7227 or click here to find a booklet called Medicare and Clinical Research Studies. To read more about how The Patient Protection and Affordable Care Act (also known as “Obamacare”) protects your right to participate in a clinical trial, click here: www.asco.org/practice-research/insurance-coverage-clinical-trial-participants
Also, review the consent form. A consent form is a document people have to read and sign to before joining a research study, to confirm that they have understood the purpose of the trial and all of the steps that are part of the study. The consent form also lists any extra costs you may have as a result of being in the study. If joining the study means that you need extra medical visits, ask whether the study pays for extra travel costs. Some studies do.