Empowering Patients in Advanced Therapies: Overcoming Barriers and Shaping the Future of Access and Engagement
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George Eastwood, Board Chair and Interim Executive Director of the Emily Whitehead Foundation, outlines the foundation’s transition from event-based fundraising for pediatric cancer research to a broader mission encompassing patient support and access to CAR-T therapies.
George highlights the formidable barriers in cell therapy, including limited clinical trial information and the need for patient education. He goes on to emphasize the unique challenges of cell and gene therapies, where a part of each patient accompanies them on their treatment journey. Patient stories, particularly Emily Whitehead’s, play a crucial role in connecting with pharmaceutical companies and the wider community, providing meaning to the work done in the clean room.
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In this interview, George also addresses various barriers faced by patients, such as limited access to clinical trials, caregiver support, and insufficient information about therapies. He goes on to explain how the foundation collaborates with TrueTrials.org to create an interactive map of FDA-registered cell, gene, and regenerative medicine trials, enhancing accessibility opportunities.
The interview also covers trial design, patient travel issues, collaboration challenges, and the importance of early engagement with regulators. George acknowledges the need for real-world evidence and data from the patient side for regulatory and reimbursement purposes. The risk of efficacious therapies reverting to academia due to reimbursement issues, particularly in Europe, is discussed, with a call for more data sharing among patient groups.
Diversity and inclusion in clinical trials are emphasized, particularly in diseases affecting minority communities. George stresses the importance of building trust with these communities and accelerating trial enrollment, concluding by highlighting ongoing challenges in access to cell and gene therapies, suggesting a holistic approach by applying successful principles from oncology and cancer care to this evolving field.