Patient Insights Board Member
Sheila Marie Johnson began working with Medidata in November of 2020 months before the patient advocate consultants would be formalized as the Patient Insights Board. Sheila served in the US Air Force for decades before a diagnosis of metastatic breast cancer forced her into retirement. She was in treatment for fourteen years before her death in April of 2024. Sheila was especially passionate about making sure minority and underrepresented communities understood the importance of their participation in research. Sheila approached every interaction with kindness and joy. Despite her many accomplishments, she was filled with humility and she always expressed genuine amazement that her advocacy work was of such enormous impact. Sheila enrolled in an early phase trial for the drug, Enhertu which quickly changed the trajectory of treatments for people with HER2+ breast cancer. Her book, A Survivor’s Lens was adapted for the BET+ movie, God’s Grace: The Sheila Johnson Story. Always quick to offer assistance, to share her story, or do anything that would be helpful, Sheila’s legacy, in her own words will live on, “Sheila tried. Sheila cared. And Sheila did everything she could to end breast cancer once and FOR ALL.”
In October of 2023, just six months before her death, the movie was released and she was featured on the local news:
Black woman fighting decade-long battle with breast cancer advocates for others with the disease