Insurance Coverage, Clinical Trials, and You

A look at the intersection of insurance coverage and clinical trial participation with tips and resources from Casey Quinlan.
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“Is it covered?”

That’s a question that everyone in the US with health insurance asks all the time, about everything from routine doctor’s office visits to caring for a complex or chronic condition. If you’re dealing with a “big” diagnosis like cancer, or diabetes, or multiple sclerosis, and want to take advantage of clinical trial options as part of your treatment plan, you might need to negotiate with your insurer to get to “yes, it’s covered” for trial-related care that isn’t part of the trial itself.

Coverage Is Key, Which Means Homework for You
American healthcare’s payment system seems to run on questions being answered with “it depends,” and this is no exception to that rule. Add “experimental” or “investigational” to the treatment options discussion, and the complexity of that discussion mushrooms. Is the clinical trial site in your insurer’s network? If there are regular scans or lab testing required, does the trial cover all of them?

Tips for Navigating the Journey

  • Work with the clinical trial team to determine exactly what is, and is not, covered by the trial itself. Here’s a good resource page on the Patient Empowerment Network’s site to help you work up your list of questions for your team. Travel expenses, drug costs, follow-up clinic visits are all items that can be covered by the trial’s budget, as well as the investigational or standard-of-care treatments you’ll receive, depending on which arm of the trial you’re randomized to. Asking at the outset will prevent surprises later.
  • Read through your insurance benefits documentation to see how it defines experimental or investigational treatments in the definitions section of the policy. Follow up with your insurer via their customer service team, and keep records of the names and dates of those conversations, along with the information you’re given.

Homework Pays Off in Final Grade (Your Medical Bills)
If you think this seems like a lot of effort for someone dealing with an illness or condition, and all the decisions that entails, you’re right. However, since the US healthcare system relies on health insurers to manage paying for medical treatment, including determining what medical treatment they’ll pay for, this is a required process. On the plus side, you won’t have to walk this path to “covered, or not?” alone. The trial team has experience in dealing with these questions, so use them as a resource.

Clinical Trial Coverage Resources
Speaking of resources, here are some links that can help you sketch out your battle plan for getting your clinical trial coverage questions asked, and answered:

Clinical research is the path to better treatments for any medical condition. For those people at the front of that wave — people with diagnoses who seek better, more effective treatments and who participate in the clinical research that uncovers them — the process will likely require negotiating with the payer side of the healthcare equation. Being an empowered patient takes some work, but it does pay off when you get access to the right care for you. Being prepared for that effort will help you make sure you don’t wind up with any unpleasant surprises in the form of medical bills. It’s all part of the clinical trial participation game.

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