Can you really be enthusiastic about participation in a clinical trial? Well, yes you can. Let me take you through my reasoning as to why I am a passionate advocate for trial participation.
I have undertaken four trials. Two for promising therapies that unfortunately did not produce the outcomes necessary for enough patients to warrant advancing the therapy further. A very successful trial for a stem cell mobilizing drug, and a double blind trial for an attenuated shingles antibody.
There are a number of reasons that make a compelling case for being a willing trial participant. Maybe these reasons will resonate with you:
It helps to have a serious illness
In 1996 I was diagnosed with Multiple Myeloma, an incurable but treatable cancer. Nothing focuses the mind more than a diagnosis for a serious illness. I will be perfectly honest with you, if I was healthy or had totally recovered from a curable cancer I might not be quite as motivated. However, for the other reasons I outline below, I suspect I would be a trial participant regardless of the diagnosis.
Trial participation is remarkably low and this holds back medical progress
According to some estimates, fewer that 3% of adults with cancer participate in clinical trials! Don’t you think that is unbelievable? Given the continuing search for a cure, I am totally amazed that we are not all falling over ourselves to participate in trials. Surely we should be super-motivated to help ourselves and the many friends we meet on our cancer journey.
Trial participants tend to do better than those who don’t participate
Participation in trials might actually do you good. No guarantees here, but in aggregate, that is what the data suggests. This might be because trial participants get access to novel treatments not available to the general patient community. It may also be that there are some benefits from the extra attention you receive from the health professionals running the trials.
For me, one trial actually led to a successful stem cell collection when two previous attempts had failed using conventional approaches. I used these stem cells earlier this year when I relapsed. I don’t need further convincing!
You meet really smart and motivated people
There is something quite satisfying about reviewing your situation with highly qualified health professionals. This is in no way to denigrate the trusting relationship we all establish with our treating Oncologist/Heamatologist, but a (free) second opinion is pure gold, especially for such a difficult cancer like myeloma. It’s good to have your assumptions about the best treatment strategy tested, even if nothing changes as a consequence.
I am also in awe of the trials teams and how competent and motivated they are. How could I not want to help them in their quest to improve cancer therapies for people like me?
I might actually help the cancer community
Most people who participate in a trial are motivated by the possibility that their involvement will improve the lot for fellow cancer patients, even if that is some time in the future. This is altruism at its best. Trial participation is one of the best things you can ever do. Try it, you will feel great.
I have the time and I am available, and what’s more I meet the entrance requirements
Not everyone can participate in a cancer trial. First, and most importantly, you have to have cancer (actually that is not strictly true. In some trials, healthy family members are sought for trials). But my point is, if you are well enough, you meet the eligibility criteria, and can afford the time, you are uniquely placed to be part of medical progress. You are special, and you can make a difference.