PAN's Government Relations Team: Poised for Action

The Parkinson's Action Network (PAN) is the unified voice of the Parkinson's community on numerous public policy issues affecting the Parkinson's community.  While PAN relies on its extensive grassroots network across the country to educate our nation's elected officials on Parkinson's issues, PAN's government relations staff in its D.C. office helps pave the way. 


From L to R:  Becca O'Connor, Director of Government Relations; Tim Johnson, Associate Director of Government Relations; and, Catherine Pugh, Program Assistant.

Becca O'Connor, JD, PAN's Director of Government Relations, joined PAN in May 2011 and has an extensive policy and advocacy background.  Tim Johnson, Associate Director, came to PAN in January of this year and previously worked for the Department of Homeland Security, as well as a political consulting firm.  Catherine Pugh, Program Assistant, started at PAN in January 2011 as the program assistant in the grassroots advocacy area and moved to government relations in October 2011.

PAN's government relations group is the Parkinson's community's eyes and ears on Capitol Hill and throughout the executive branch of the government, and works in tandem with PAN's powerful grassroots network to ensure the Parkinson's community's voice is heard on relevant policy and funding issues.

“It's not just monitoring what's going on in Washington, but really rolling up your sleeves and being proactive about effecting real, meaningful change for people with Parkinson's and future generations,” said Becca O'Connor, PAN's Director of Government Relations.  “It's important to have a balance between proactive and reactive policy work.  We look for where the Parkinson's community can add unique value and really push to make a difference,” she added.

Working on numerous issues throughout the year – from legislative proposals and regulations to advocating for federal research funding and Medicare concerns – there's no such thing as a “typical day” for PAN's government relations team.  They go from being on the Hill to meeting with other advocacy and policy organizations to working with colleagues in Washington and advocates across the country to make things happen. 

PAN maintains a steady roster of government relations work, and reports regularly on these focus areas in its Progress and Impact report, published on the PAN website.  While priorities change and shift in accordance with what Capitol Hill and the White House are working on at the time, PAN's current federal priorities include:

  • Maintaining an active voice in fighting for $32 billion in research funding for the National Institutes of Health (NIH) for FY 2013;
  • Working in coalition with other organizations to safely streamline and hasten the drug approval process at the Food and Drug Administration (FDA); and
  • Giving advocates a voice in the implementation of the Patient Protection and Affordable Care Act – particularly, the implementation in all 50 states of the law's essential health benefits requirement.

"For many years, PAN was focused primarily on legislative issues because that's where policy changes were taking place," said O'Connor.  "Now, the changing nature of ‘doing business in Washington' has meant that we need to extend a deeper and broader focus across the entire federal spectrum, as well as into the states."

O'Connor and PAN CEO Amy Comstock Rick are often asked to testify before government committees and panels, as well as present information to government officials on issues that are critical to the Parkinson's community.  For example, O'Connor recently met with FDA officials and offered comments on the need for an enhanced role for patients in the drug review and approval process.

The government relations and grassroots outreach staffs work closely together at PAN to ensure the Parkinson's community's voice is represented effectively.

"Our national grassroots network enables us to educate, raise awareness, and get the phones to ring on Capitol Hill and throughout the halls of government," she said. 

And that works both ways, she added.

"After a group of nearly 100 advocate leaders spent the day on Capitol Hill talking about the need for more funding for NIH and the need to protect affordable, accessible prescription drug coverage, not only did seven Members of Congress join the Congressional Caucus on Parkinson's Disease, my phone began ringing off the hook with calls from Hill staffers saying about our issues and concerns, ‘we're on board, we hear you, and we're ready to act.'  That's what makes our work so meaningful.  That's what energizes and excites the whole staff."

What challenges await PAN's government relations team? 

"All patient advocacy groups need to find creative ways to get federal decision makers to focus on issues other than what is currently getting priority focus in Washington – funding and appropriations,” said O'Connor.  “Getting traction on pending legislation for programs that can do things to benefit our community is something we all need to work hard and creatively on.  At the same time, we must also continue to work collaboratively within the executive branch and allied agencies to effect policy and systemic change."

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