Navigating patients one-on-one brings home the overwhelming complexity they face in trying to choose a clinical trial. Our recent advances in therapy are revolutionary but still limited. They came about through clinical trials, and trials still hold the key to developing regularly effective treatment with minimal toxicity. As a patient or caregiver dealing with life threatening melanoma, you may be frozen with anxiety, and find it tough to put your thoughts together. But patient/caregiver confusion is only a piece of the problem. Descriptions of clinical trials are complicated and confusing! A good example of this communications barrier is the current and promising array of PD-1 trials. Some trials are for those who have had prior therapies (but there may be a limit by number and kind of drugs), and others are for those who have had no previous treatment. Then there is the problem of having the choice of getting new drug or “old” chemotherapy being left to randomization. Who is going to want to be randomized to a chemo they KNOW is minimally effective yet has toxicity associated with it? In one of the trials, if your disease does not respond to chemotherapy, you can switch to the PD-1 drug. But in the other trial you are stuck with the chemo. The choices aren’t good. Are you confused just reading this?
Considering the patient’s well-being as co-equal to the scientific outcome of a planned trial will lead to less confusion and more patients joining trials. This focus can be achieved through better collaboration among patient advocates and clinical trial partners.
We at MIF are committed to patient access and will be on the front lines everyday empowering patients with the latest information on clinical trials, and helping them get there.