Clinical trials can make a difference for some people living with lung cancer. I know. I have a friend who has bypassed her predicted survival by years via a medication obtained only through clinical trials. In addition, my brother's family has a grandparent that lived well beyond what doctors would predict - after the same drug became available to the general public (which was only possible through the participation of others in clinical trials.)
One reason is that people are simply unaware of trials that are available. In this age of rapidly expanding knowledge it's not possible for one oncologist to stay abreast of every study being done. Thankfully several of the lung cancer organizations have banded together to help with that. The Lung Cancer Clinical Trial Matching Service is a free service that can help match you with trials based on your particular type and stage of lung cancer.
But there are other barriers as well. A recent study set out to examine some of these reasons why eligible patients were not enrolled in studies. The most common reason was a preference to seek out treatments closer to home (49%) followed by patient refusal (43%.) Knowing this, what can we do to make sure people who are eligible have this opportunity?
One important point is to make sure people understand the purpose of clinical trials. In other words, the reasons that you're not just being a guinea pig. Whether its stories about the holocaust, or fears based on rumors, that's just not the case now. But not all trials are the same, and this can be confusing. Some trials look to see if a new drug or treatment will improve survival, whereas others are designed to see if a new drug or treatment will help with comfort or improve quality of life (but not increase survival.) There are also different levels of testing. For example, a phase 1 trial is often the first study done on humans and is done mostly to see if a new treatment is safe. The benefit of these trials is primarily for others in the future (but there are exceptions in which the treatment may improve survival.) On the other hand phase 3 trials are often done as a way to compare a new treatment against the "gold standard" (the most widely accepted best treatment) to see if it works better. In some cases being involved in this type of study allows participants access to medications not available to the general public - medications that could possibly improve survival.
Wishing to find trials closer to home is a more difficult issue. It goes without saying that people feel more comfortable when they are at home amidst family and friends. Plus traveling for treatment can be expensive. But there are some options that can make this easier for those who are interested. Several cancer centers have organizations that provide free housing near the center (for example, Hope Lodge.) Another option to keep in mind is that most travel expenses related to cancer treatment are deductible.
To learn more about clinical trials - the types, the phases, questions to ask, and ways to find them - check out these articles:
- What is the Purpose of Clinical Trials?
- Types and Phases of Clinical Trials
- Risks and Benefits of Clinical Trials
- How to Find Clinical Trials for Lung Cancer
Photo: National Cancer Institute, photographer Rhoda Baer
Horn, L. et al. Identifying Barriers Associated With Enrollment of Patients With Lung Cancer into Clinical Trials. Clinical Lung Cancer. 2013. 14(1):14-18.