Bryan Soronson Advocates for Myeloma Clinical Trials
With Myeloma Action Month (MAM) taking place this March, the International Myeloma Foundation (IMF) is excited to share this collection of patient and care partner stories from those who have completed the first course of the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community.
(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 10-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed first class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. If you have questions or inquiries, or you would like to sign up for future LAMC summer and fall courses, please email Michael Riotto at [email protected].)
Bryan Soronson is a seventy-one-year-old multiple myeloma patient who was diagnosed over six years ago. He describes his treatment journey as follows, “I went through all the steps including induction therapy, stem cell transplant in a clinical trial, and I'm currently in a full complete remission.”
As the former senior administrator of the University of Maryland Department of Neurology, he oversaw nearly 200 clinical trials from both a financial and administrative perspective. Over the years, he became a subject matter expert and gave nearly 100 presentations on how to set up and manage clinical trials.
Bryan Advocates for Improved Clinical Trial Access and Participation
In this video, Byran shares, “I feel that this gives me a unique level of expertise, not only managing and presenting about trials, but also being a clinical trial participant to really focus on the fact that not enough qualified patients enroll in clinical trials. In the cancer area, only 7% of cancer patients enroll in treatment trials. And while that has increased over the years, it is still much lower than it should be. Granted, some patients will not qualify for clinical trials for various reasons, but it is incumbent that opportunities are available and everything is properly scheduled to open access for patients to participate in clinical trials in order to advance science and develop new products and therapies for patients with multiple myeloma, blood cancers and other rare diseases.”
He continues, “This is the future, and I feel strongly that opening access and providing as many opportunities to patients with all socioeconomic and geographical aspects to participate in clinical trials will be beneficial both to the patient to advance science and for the communities, these rare disease communities that exist right now.”
The IMF Stands Behind Bryan’s Message
The IMF stands behind Bryan’s statements and works to increase access to clinical trials. As of October 2024, the IMF launched our Clinical Trials Matching Engine, powered by SparkCures. You can access it at /sparkcures.
This platform simplifies the process of finding and connecting with clinical trials, providing a lifeline for patients, their care partners, healthcare providers, IMF Support Group Leaders, and IMF team members. It helps users to discover clinical trials tailored to their specific diagnoses, treatment histories, and personal preferences.
As Bryan details, the current system for finding clinical trials can sometimes be fragmented and confusing. Patients struggle to navigate these complexities.
By lowering the barriers to access, this tool empowers patients to explore potentially life-saving treatments, for all patients, regardless of their background, location, or disease status.
Together with patient advocates like Bryan Soronson, we are reducing the barriers to entry for patients interested in enrolling in myeloma clinical trials.
