21st Century Cures: Patients & the Patient Perspective
Treatments for patients suffering from chronic and rare diseases – whether it is medical devices or medicine – must be discovered on the ground level through basic science, be developed into practical, usable, and marketable products, and then be delivered to the patients so that the treatment may be effectively utilized.
The first roundtable is about the patient's perspective. 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.
Reforms are desperately needed. From incentivizing researchers to pursue an idea to discovering cutting edge treatments to finding the right clinical trials; from encouraging private sector and investment capital to better using accelerated approval; from public-private partnerships to allowing technological advancements like telehealth in health care – the potential for reforms is huge.
Participant List
Below is a list of confirmed participants of the roundtable. By clicking their name, you can view the remarks they have prepared for their opening statement. Testimonies will be added as they are received.
- U.S. Representative Gus Bilirakis
- Dr. Wayne Taylor, on behalf of the Leukemia and Lymphoma Society
- Mrs. Colleen Labbadia, on behalf of the Parent Project for Muscular Dystrophy
- Ms. Patricia Stanco, MHS, on behalf of the ALS Association Florida Chapter
- Ms. Ashleigh Pike and Ms. Beth Pike – dysautonomia patient advocates
- Dr. Samantha Lindsay, on behalf of the Alpha-1 Foundation
- Ms. Janice Starling, on behalf of the American Association of Kidney Patients
- Mr. and Mrs. Michael and Gretchen Church, on behalf of the Parkinson's Action Network
Location, Date, and Time
Tuesday, August 19th, at 1:30 pm
The Bethany Center
18150 Bethany Center Drive
Lutz, FL 33558