Clinical Leader: PAN advocate Tony Newburne on the importance of representation in clinical trials
Information about this website: Following the March 2026 merger of Patient Advocate Foundation and the PAN Foundation, this website is now a part of Patient Advocate Foundation and remains active during our website transition.
Where to find information during our transition:
- About the merged organization: uniting.patientadvocate.org
- Financial assistance: totalassist.org
- Additional direct patient services and resources: patientadvocate.org
- Education: panfoundation.org and education.patientadvocate.org
- Clinical trials education: clinicaltrials.panfoundation.org
- Advocacy: npaf.org
- Research: patientinsightinstitute.org
Clinical Leader interviewed PAN patient advocate and member of the Patient and Family Advisory Council, Tony Newburne, about his journey as a multiple myeloma patient, seeking out clinical trials and advocating for access to healthcare for others.
At the age of 39, Newburne was diagnosed with high-risk multiple myeloma and underwent a series of treatments and a kidney transplant. His oncologist advocated for his participation in a clinical trial, but because of his treatment regimen, he didn’t meet the trial qualifications.
Newburne also shares his journey as a cancer patient and advocate for pursuing clinical trials on PAN’s clinical trials education site.
“I feel clinical research is absolutely fundamental to how we advance approaches to the care of patients today. And if patients who look like me aren’t a part of clinical trials, my care is overlooked. With me being Black and a part of the LGBTQIA+ community, the lack of representation may lead to a lack of access to effective medical interventions. Approval and indications for new therapies are often restricted to the demographics of the populations included in clinical trials,” Newburne shares in his interview with Clinical Leader.