A Weekly Advocacy Message From Mary Woolley: The Empathy Gap

Mary Woolley

Dear Research Advocate: 

Not surprisingly since it is the last week before an extended recess, Congress has been quite busy. There have been highs, lows and a lot that’s in between. Congress passed the Comprehensive Addiction and Recovery Act (CARA), but without a dedicated funding stream to jump start progress. The House Appropriations Committee passed an FY17 Labor-H appropriations bill with a robust $1.25 billion increase for NIH and a pledge from Chairman Tom Cole (R-OK) to make this number even higher. However, there was bitter partisan disagreement on restricting CDC gun violence prevention research and how to address the Zika crisis, leading to passage along party lines of a bill that did not open up gun violence research.

The House Labor-H bill does propose FY17 funding for Zika, but unless there’s an 11th hour solution, Congress will fail to provide the funding needed now to address this threat. Last Friday we sent a letter to House and Senate leadership requesting immediate action on Zika. The Administration sent a letter to the Congress detailing the likely consequences of inadequate funding. Partisan politics must be put aside. As the former Ebola Czar, Ron Klain, has said, babies aren’t Republican or Democrat: they’re babies. Where is empathy? Where is action to address problems before they become crises? You can be sure we will continue to fight for a responsible response to this threat.

While there was no legislative action around the “Cures” legislation, House Speaker Paul Ryan (R-WI-01) told reporters they are making good progress. Senate HELP Committee Chairman Lamar Alexander (R-TN) has echoed the Speaker’s sentiments, and while passing any bill becomes more challenging the closer we get to elections -- a point Ellie Dehoney made this week in the Washington Examiner-- House E&C Chairman Fred Upton (R-MI-04) believes the prospects are good. In one of my favorite quotes this week, he quipped: “Humpty Dumpty is back together again,” saying the final list of pay-fors to offset mandatory funding for Cures is “pretty close” to being completed.

Rumor has it that Republican leadership will try to pass a six-month continuing resolution (CR) in September that would flat-fund the government until March of 2017. That would be a mistake for our nation on many levels, certainly not the least of which is the stultifying effect on medical progress. Clearly, we in the research advocacy community have our work cut out for us. Research!America is holding a conference call for our members next Thursday (7/21) at 1:00 PM ET to discuss 21st Century Cures, the CR situation, Zika and other relevant issues. Please save the date; more details to follow.

To kick off an advocacy-packed recess, we have launched a new advocacy platform. What’s new here are dedicated pages for federally funded R&D and private sector innovation advocacy activities, as well as suggestions of new ways to take action, like a new portal that tweets your message directly to your specific members of Congress! I encourage you to explore all the different ways to make your voice heard.

An apparent lack of empathy about real-time health concerns like Zika isn't limited to sitting members of Congress. We released a new public opinion survey this week highlighting an “empathy gap” between voters and candidates when it comes to realizing expectations for medical progress. A majority of respondents, across the political spectrum and among minority groups, agree that presidential and congressional candidates are not listening. More survey results here. Help rectify this situation -- take the Campaign for Cures pledge and work to make sure research is part of the conversation in every race!

Lastly, I hope you’ll mark your calendars for our annual National Health Research Forum coming up on Thursday, September 8, 2016 at the Knight Conference Center at the Newseum in Washington, DC. It is shaping up to be a riveting discussion aiming for straight talk and new thinking on tough challenges, featuring top federal officials from AHRQ, CDC, FDA, NIH and NSF, as well as leaders from academia, patient advocacy organizations and industry. Registration is now open!


Mary Woolley

Add comment

Plain text

  • No HTML tags allowed.
  • Adds node titles to internal links found in content (as HTML "title" attribute).
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient