Justin Buhl participated in a Phase 1 clinical trial that was meant to test safety and not provide treatment. He faced unknown risks, toxic side effects and clinical blindness to adverse events. His suffering like that of many patients went largely unseen and unrecorded.

Early phase trials often do not have mandatory data monitoring to catch and respond to harm. They do not always share individual participant data so researchers and the public can learn from adverse events. Clinicians are not always trained to recognize and respond to dangerous side effects. Patients who are high functioning or have other treatment options are not always protected.

The Buhl Act would require active monitoring of adverse events in all Phase 1 trials, mandatory sharing of deidentified patient data, clinician education to protect patients and enrollment policies that put patient well being first.

No patient should be treated as a data point. By signing this petition you are demanding accountability, transparency and patient centered care. Let Justin’s experience drive meaningful reform.

Sign today to put #PatientsNotData first