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LLS Suncoast Volunteers Advocate for Improved Drug Approval Process

Posted by andreahgreif in The LLS Blog, 20 August 2014 · 38 views

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Dr. Wayne Taylor, LLS Advocate and leukemia survivor, participates in 21st Century Cures Panel

Dr. Wayne Taylor, leukemia survivor and advocate for The Leukemia & Lymphoma Society (LLS), on Tuesday participated in the Congressional 21st Century Cures: Patients and the Patient Perspectives Roundtable hosted by Rep. Gus Bilirakis (R-FL). The roundtable featured advocates from various patient-centered organizations as well as an audience of constituents and patient advocates.

The 21st Century Cures is a bipartisan Congressional initiative to remove impediments to therapy approval and development.

“For me, the 21st Century Cures initiative is centered on patients. A broken discovery-development-delivery cycle impacts patients. Patients are the ones who are unable to gain access to potentially lifesaving or life-improving treatments,” Rep. Gus Bilirakis of Lutz, Fla. shared.

The goal of these roundtables are to find new solutions to capitalize on the research and innovation in the healthcare space to find new cures and speed up the delivery of these cures to patients. Congressional leaders are looking to our patients and researchers to help provide recommendations and examples on how to improve the lives of our patients.

Dr. Taylor opened the roundtable by sharing his story as a survivor and LLS advocate, and provided an example of how LLS is trying to change treatment delivery for patients with acute myeloid leukemia (AML). Here is an excerpt of Dr. Wayne Taylor’s statement from the Roundtable:

“My perspective as a ‘physician-survivor’ is a little unique. There are many patients who are diagnosed with AML whose story is not as fortunate as mine, as only 20% of AML patients survive five years after diagnosis. Through my participation in The Leukemia & Lymphoma Society and meeting with other survivors, I’ve observed some key areas of opportunity to improve the development and access to cures for cancer patients. First, access to NCI designated cancer centers like Moffitt (Cancer Center in Tampa, Fla.) is an essential part of diagnosis and treatment. When insurance plans limit access to [NCI Centers], such as what is currently happening in the federal health exchanges, it means that certain patients will get to benefit from the amazing care that I did, whereas patients with insurance that is not as robust won’t have that option. Second, there is room for improvement in the clinical trial matching and selection process.

Lastly, I’d encourage Congress to look to some of the amazing partnerships and models happening in the private sector for direction on ways to advance drug development. One incredible example of this is LLS’s Beat AML project, which is designed to find new treatments for this disease that I battled, which hasn’t seen a new standard of care in 30 years. Beat AML is a project privately funded by LLS, that partners with several cancer institutions to collect and analyze samples from 900 AML patients over the next three years.”

The 21st Century Cures Congressional roundtables will continue the next few weeks at the following locations, please contact your local LLS chapter if you are interested in attending:
August 25 – Boston, MA
August 27 – Columbus, OH
August 29 – Lancaster, PA



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