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Speaking Out About Speeding the Development of New Therapies

Posted by lynnesmith in The LLS Blog, 17 September 2014 · 69 views

Advocates around the nation are speaking out at roundtable discussions in their congressional districts to help shape the policies they hope will speed the development and approval of new therapies and diagnostics.

On Friday, LLS staff member and patient advocate Brian Sladek attended a roundtable in Springfield, Ill. to talk about blood cancer and the benefits of access to cutting-edge therapy. The event was hosted by Rep. John Shimkus (R-IL) and Rep. Rodney Davis (R-IL) and included other community health organizations and health care professionals from around the state.

Brian shared his experience with non-Hodgkin lymphoma and the role that rituximab, a monoclonal antibody that helps boost a patients’ immune response, played in his treatment. After his first diagnosis in 1999, he did not qualify for a clinical trial featuring the new therapy. He was denied access due to a long waiting period required by the FDA. Upon being diagnosed again in 2010, Brian received rituximab as part of his regimen and it is now standard protocol for treating many types of lymphoma. LLS had contributed significant research dollars to advancing this life-saving therapy.

The discussion was LLS's latest showing in the House Energy and Commerce Committee's 21st Century Cures initiative, a congressional initiative which aims to take a comprehensive look at what steps must be taken to accelerate the pace of cures in America.

Last week, eight LLS advocates from Pennsylvania attended Congressman Joe Pitts' federal roundtable discussion in Lancaster. Experts such as Dr. Chi Van Dang, MD, PhD, director of the Abramson Cancer Center and an LLS supporter, shared their perspectives and ideas for how to keep America at the forefront of medical innovation. In his comments, Dr. Dang referenced the innovative work of Dr. Carl June at the University of Pennsylvania and talked about how this research is dramatically impacting patients with leukemia.

Director of the National Institutes of Health Dr. Francis Collins was among those attending. "I am exhilarated by what I see in terms of the potential of these advances in medical research to transform our ability to give people the opportunity to live long and healthy lives."

In August, leukemia survivor Dr. Wayne Taylor shared his story in Florida as a survivor and advocate at a roundtable hosted by Rep. Gus Bilirakis (R-FL) and talked about opportunities to improve the development and access to cures.

Dr. Lou DeGennaro, LLS president and CEO, discussed personalized medicine and FDA policy issues in a roundtable hosted by the Committee on July 24.
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