Florida Advocates Participate in 21st Century Cures Roundtable

On August 19, South Florida State Directors Michael and Gretchen Church submitted testimony and participated in a 21st Century Cures Roundtable hosted by Rep. Gus Bilirakis (R-FL).

The 21st Century Cures Initiative was started by Rep. Fred Upton (R-MI), chairman of the Energy and Commerce Committee, and Rep. Diana DeGette (D-CO), to take a comprehensive look at what steps Congress can take to accelerate the pace of cures in America through medical innovation.

So far, the Energy and Commerce Committee has held several hearings and roundtables. Rep. Biliraki’s roundtable is one of several events held in different communities this month.  In addition to Michael and Gretchen Church, Rep. Bilirakis’ Aug. 16 roundtable titled, “Patients and the Patient Perspective,” included patient advocates from many other disease communities including cancer, ALS, and kidney disease.

PAN asked the Churchs to share their experience at the roundtable.

PAN: How was the round table organized?

M&G: The Congressman’s staff arranged two large round tables in the front of the room. The discussion began with opening remarks by the Congressman and individual participants gave three-minute opening introductions.

PAN: What topics were you able to bring up during the discussion?

M&G: Primarily we discussed the importance and potential of telehealth but we were able, during the course of the next 3.5 hours, to bring up funding for the National Institutes of Health and the Department of Defense Parkinson’s research program, and Food and Drug Administration reform.

PAN: What was Rep. Bilirakis’ reaction to your comments and questions?

M&G: He was very open and sympathetic to all presenters and listened intently. He asked what more he could do.

PAN: What was the highlight of this experience?

M&G: The fact that we got to address each question and that a Member of Congress, who sits on key committees, took 3.5 hours out of his busy schedule to listen to the concerns of patients.

PAN: Did Bilirakis or his staff say how he would follow up with each of you?

M&G: Yes, Rep. Bilirakis said he would very much like to sit down before recess ends for a one-on-one, more detailed interview. He said that Parkinson’s disease was very close to his heart.

PAN: Would you encourage other Parkinson’s advocates to participate in roundtables and town hall meetings such as this one? Why?

M&G: Yes. Fresh perspective and a consistent messaging across advocacy lines are powerful. Rep. Bilirakis wants to meet on a biannual basis and specifically asked for a strong message to bring back to the Energy and Commerce Health Subcommittee. He said hopefully this will catch on with colleagues.

Thank you, Michael and Gretchen, for being a voice for the Parkinson’s community.

To read their full submitted testimony, click here.

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Use PAN’s August Recess Toolkit to find tips and tools for meetings with your Members of Congress this month. If you have any specific questions, don’t hesitate to reach out to our government relations staff – Catherine Pugh at [email protected], Jamie Tucker at [email protected], or Jennifer Sheridan at [email protected].


Date originally posted: August 22, 2014.