When my mother-in-law Karla was diagnosed with glioblastoma, a terminal form of brain cancer, we assumed the medical system would guide us. We expected doctors to explain our options, offer resources, and help us navigate the treatment path. Instead, we found ourselves alone in the gaps of a complex healthcare landscape. We were never told about clinical trials, second opinions, or specific noninvasive therapies that could have extended her time with us. The burden of research, communication, and decision-making fell entirely on my wife, Michelle, who was already processing the grief of losing her mother while providing daily care.
This experience is not unique. It is a predictable pattern within our medical infrastructure. Our nonprofit, OurBrainBank, surveyed patients and caregivers across the country to understand the scale of this disconnect. The results are stark. More than two-thirds of patients were never offered a clinical trial, and nearly 9 in 10 were never informed about critical tumor testing. These gaps in communication are not failures of scientific progress. They are failures of equity and navigation. The system provides access to high-level science but often fails to provide the basic information necessary for families to use it.
Advocacy is often framed as a personal responsibility, but expecting families to be experts while a loved one is dying is an incomplete approach. True care involves closing the distance between the research available and the patient experience. We need systems that treat the caregiver as a partner rather than an observer. My work now focuses on collecting real-world data from the moments between appointments, ensuring that the patient voice is impossible to ignore. We collect these stories so that the next family receives the map we never had.
Karla wanted to help others in her position, even while she was fighting for her own life. I carry that responsibility every day through our research and data collection. We must move toward a model where patients and families are fully informed about every viable option from the start. A diagnosis should not come with the additional burden of navigating a system that keeps its possibilities hidden. We owe it to patients like Karla to demand more than just standard treatment. We owe them transparency, clear communication, and a path that prioritizes their autonomy and time.