But they are not readily accessible to patients with metastatic cancer.
Clinical trials have the potential to extend and possibly save lives. But they are not readily accessible to patients with metastatic cancer. They place undue burdens on patients, employ restrictive eligibility requirements and do not reflect the perspective of the metastatic population, making it difficult to impossible for patients to participate in appropriate, convenient trials in a timely manner. Clinical trials are often the last resort for metastatic patients, who have exhausted all “standard of care” options. Yet, for that very reason, metastatic patients are typically excluded from most clinical trials.
METUP presents the following issues based on patient input:
Clinical trials place disproportionate burdens on patients
It is too difficult for patients to find appropriate clinical trials. Patients have to do most of the work to find the trials for which they are eligible. This is an arduous task at the best of times, it is a horrendous burden for terminally ill patients.
Patients are on their own to when it comes to finding clinical trials. First, they need to identify trials that they are eligible for, whittle those down to a short list, and then go to each trial site in person to meet with the trial team. After that, they have to compare the slots they’ve been offered (because even though one might appear to qualify for a trial, they may not offer that slot, often for unknown reasons). Once patients have their offered slots, they need to make a decision based on data that may not yet be available or easily comparable. Then patients have to factor in timing, logistics and overall risk/benefit.
“No one at my home hospital knows a damn thing about metastatic triple negative breast cancer trials. I am the fucking expert! I have to learn everything I can because I’m the one who’s going to die if it doesn’t work.”
“Cancer Commons put me at the center of their matching service and helped me advocate for what I wanted. Even if it wasn’t the ‘best’ trial, they supported my decision.”