By Katherine Sharpe, MTS
"It might be time to consider a clinical trial." I have heard this many times in my work with the American Cancer Society. Unfortunately, in most cases, people think of clinical trials as the option of last resort, so they consider one only when all other treatment options have failed.
But the truth is that clinical trials should always be considered as a treatment option. In fact, there are clinical trials for almost every type of cancer and stage of disease - there are even clinical trials for cancer prevention! Without clinical trials, we would see virtually no advances in cancer treatment.
The good news is that more and more people are considering a cancer clinical trial when they are first diagnosed - and that helps speed up breakthroughs in cancer care. But there is clearly a need for more people to learn about and consider this option.
Take a look at pediatric cancer. When I was growing up in the 1970's, there were several books that highlighted the stories of teenagers diagnosed with leukemia. Unfortunately, most of these stories didn't end well. However, since the 1970's, the cure rate of acute lymphoblastic leukemia (ALL) has gone from 30% to 80%, largely due to advances discovered during cancer clinical trials. Today, approximately 70% of children with cancer participate in a clinical trial, compared to a mere 5% of adults with cancer.
So why don't more people participate in cancer clinical trials? There are lots of reasons.
- Lack of knowledge: One study showed that only 15% of people with cancer knew that a clinical trial was a treatment option for them. Most people who participate in a clinical trial are encouraged to do so by their doctor. If your doctor doesn't bring it up, ask.
- Insurance coverage: If the costs of a clinical trial aren't covered, patients may have to opt out, even if they would like to take part. Laws on what insurance must cover vary from state to state.
- Fear of being a "guinea pig": Study participants are not guinea pigs; rather, they are partners in the process of discovery - and that can be a very empowering experience! Patients overwhelmingly report being treated with dignity, respect and the highest degree of care during their clinical trial experience.
- Fear of receiving a placebo (no treatment) during the study: This fear is misplaced. During a cancer clinical trial, a study participant will receive either the standard of care - the most effective known treatment - or the new treatment being studied. Cancer treatment will never be withheld from a patient participating in a clinical trial.
Clinical trials allow patients to participate in research into tomorrow's medical advances and possibly see some benefit for themselves. Remember, every standard cancer treatment being used today was at one point studied in a clinical trial.
There are lots of ways to learn more about clinical trials and whether you might qualify to take part. The American Cancer Society, for instance, offers videos and detailed information describing the clinical trials process, and a clinical trials matching service to help cancer patients find an appropriate clinical trial. The federal government maintains an extensive list of federally funded clinical trials for cancer and many other conditions.
Every day, researchers are learning something new about cancer and how to treat it, and new clinical trials that might be right for you could be looking for participants. If you decide to take part in one, not only could you be a part of the next cancer breakthrough, but you personally might benefit from the treatment being studied, and from the excellent care and attention that clinical trial participants often experience.
Katherine Sharpe, MTS, is the managing director of prevention and survivorship at the American Cancer Society's National Home Office.