People who work in biopharmaceuticals might think that the policy environment in which the company operates doesn’t change,” says Ted Buckley, who directs Shire’s U.S. Government Relations and Public Policy Team. “But the fact is that we’re working every day to help policymakers understand just what is at stake and what patients need. This is an exciting, fluid field. Laws and regulations can change as understanding does.”
Dedicated to shaping the policy and regulatory environment in ways that allow Shire to deliver its full value to all stakeholders, the team engages in strategic partnerships, advocates for public policies, facilitates access to innovative medicines and healthcare solutions, and positions Shire to be a leader on policy issues, among other things. It listens and it takes action. It brings patients to Capitol Hill and helps them tell their stories.
Last November, the team, together with the Rare Disease Legislative Advocates and the National Health Council, created and sponsored a Rare Disease Congressional Caucus Briefing that helped a broad- based constituency gain a greater understanding of the current rare disease legislative landscape—and the possibilities for the future.
The Honorable Joe Crowley, a representative from the State of New York, addressed the attendees. Panelists included representation from the Office of Orphan Product Development, the Every- Life Foundation for Rare Diseases, the National Health Council, the parent of a child with MPS III, Virginia Bio, the Cystic Fibrosis Foundation, and a parent advocate from Parent Project Muscular Dystrophy. The panelists spoke of the positive advancements for rare diseases while stressing the importance of implementation. They also stressed that our work is not done. For those seeking to participate in rare disease clinical trials, significant hurdles still exist and must be addressed.
"We’re living in a time of great change and opportunity for those diagnosed with rare diseases,” says Carrie Burke, who directs US Alliance Development for Shire. “With the recent changes in the Food and Drug Administration Safety and Innovation Act, we have the chance to do even more for patients. We helped sponsor this caucus to educate others and to show how much more there still is to do. We’re delighted that the conversation has continued— in the media and elsewhere.”