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CCTS MEMORANDUM | November 6, 2018

Tuesday, November 6, 2018   (0 Comments)
Posted by: Andres Bachelet
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November 6, 2018




TO:     Coalition for Clinical and Translational Science


FR:     Dale Dirks & Dane Christiansen


RE:     PCORI Advocacy Day


On Wednesday, October 31st, the Partnership to Improve Patient care brought stakeholder representatives and volunteer patient advocates together for a Capitol Hill Advocacy Day in support of reauthorizing the Patient Centered Outcomes Research Institute (PCORI). To maximize participation and impact, the event took place just ahead of PCORI’s annual meeting in Washington, DC. PCORI will cease to operate as a quasi-governmental entity that funds unique medical research (with an emphasis on rare diseases) if it is not reauthorized before it is schedule to sunset on September 30th, 2019. Key items from the Hill Day are summarized below.


·         The Hill Day mainly focused on raising awareness of the current legislative situation facing PCORI, and educating lawmakers about the value and importance of maintaining PCORI’s activities.


·         It will take the passage of a reauthorization bill or the enactment of a similar provision to extend PCORI’s mandate and operations past the end of Fiscal Year 2019. Such legislation has yet to be crafted and advanced, and would face challenging prospects with the limited number of legislative days remaining before the current Congress adjourns at the end of the year. Rather, it appears that substantive work will begin after the election and advocacy efforts will pick up steam once the next Congress convenes in January (when the political climate for PCORI’s reauthorization may be more favorable).


·         While it is encouraging that the broader patient and medical research communities have begun to coalesce around reauthorizing PCORI, success is not a certainty. Additional congressional outreach and sustained advocacy will be needed, particularly early next year (we recommend reviewing this item for potential inclusion on our 2019 legislative agenda).


·         Reauthorization efforts are traditionally a time for Congress to update or adjust federal programs and their activities. If the PCORI reauthorization effort begins to look like it will be a success, expect recommendations from stakeholders to improve, add, or otherwise change core programs and operations.