Tag Archives: John Crowley

Highlights of the 2013 National Health Research Forum

Research!America’s National Health Research Forum — held September 12 at the Newseum’s Knight Conference Center in Washington, DC — examined the current and future state of research to improve health. This year’s theme was “Straight Talk about the Future of Medical and Health Research.” Three expert panels delved into different aspects of the research ecosystem.

_DSC5052Reseach Amercia NatHealth Research Forum 9.12.13 BarrettResearch!America’s president and CEO, Mary Woolley, and chair, The Honorable John Edward Porter, opened the program. Porter introduced Bart Peterson, JD, senior vice president of corporate affairs and communications at Lilly who delivered a brief keynote speech.

“We developed an innovation ecosystem, and that ecosystem requires sound public policy. From the private sector perspective, that includes solid intellectual property protection; a fair, rigorous, transparent regulatory system; a market system of health care delivery and pricing that offers choice for patients and health care providers,” Peterson said. “But the public sector has a role far beyond just producing sound public policy … Public funding for research, which is so threatened today, is absolutely critical to the future and we care about that as much from the private sector perspective as anybody else does.”

R!A 2013 Forum

The first panel, focusing on biomedical research and development, was moderated by journalist Eleanor Clift of Newsweek and the Daily Beast and featured John Crowley, president and CEO of Amicus Therapeutics and a patient advocate; William Hait, MD, PhD, global head of R&D at Janssen Pharmaceuticals; Margaret Hamburg, MD, commissioner of the Food and Drug Administration (FDA); and Peterson. The discussion centered on innovation within the pharmaceutical industry and the relationship between companies and regulators. Continue reading →

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Do you know a stellar research advocate? Nominate them for the 2014 Research!America Advocacy Awards

Every year, Research!America honors outstanding biomedical and health research advocates from a variety of fields. We are currently accepting nominations for our 25th Anniversary Advocacy Awards. Through these awards, Research!America recognizes individuals and organizations whose leadership efforts have been notably effective in advancing our nation’s commitment to research.  The nomination process is simple and the deadline is May 15.

There are multiple categories, including individual and organization awards. Past winners include CNN Chief Medical Correspondent Sanjay Gupta, MD, patient advocate John Crowley, Chair and CEO, Amicus Therapeutics, Bob Woodruff, the March of Dimes and the late C. Everett Koop. You can read about the 2013 Advocacy Awards on our blog and view information about other past award winners on our website.  The 2014 Advocacy Awards will be held in Washington, D.C. on March 12, 2014.

Congratulations to our Advocacy Award Winners

Research!America extends our congratulations again to all of our 2013 Advocacy Award winners. The dinner was a wonderful opportunity to thank our supporters and advocates for all of their hard work and recognize leaders in the research and advocacy communities. This year’s Advocacy Award winners were Sen. Richard Burr (R-NC); Sen. Bob Casey (D-PA); John F. Crowley, patient advocate and chairman and CEO of Amicus Therapeutics, Inc.; Mark Rosenberg, MD, president and CEO of The Task Force for Global Health; John Mendelsohn, MD, director of the Khalifa Institute for Personalized Cancer Therapy and former president at The University of Texas MD Anderson Cancer Center; Diane Rehm, host of “The Diane Rehm Show” on NPR; and the California Institute for Regenerative Medicine.

You can read more about the awards and speech by Research!America Chair John Porter in this Roll Call article, in this article about Dr. Rosenberg’s award, and on CIRM’s blog. Also, visit our Facebook page and website to see photos from the awards dinner.

While we applaud our awardees for their efforts, there is still more to be done! As Research!America President and CEO Mary Woolley said in her recent weekly advocacy message, Congress is working on the budget for FY14 and there is still time to contact your representatives and tell them to make research funding a higher priority.

A Weekly Advocacy Message from Mary Woolley: Will Policy Makers let Rome Burn?

Dear Research Advocate,

Today, the Senate is planning to vote on a bipartisan continuing resolution from Sens. Mikulski and Shelby to fund the federal government through the end of the year. The good news is that the bill includes an increase, albeit small ($71 million) in NIH funding; Senator Harkin tried, unsuccessfully, unfortunately, to increase NIH even further, and Senator Durbin worked on an ambitious amendment to add more than $1.5 billion to the NIH budget. We truly appreciate the efforts of all of these champions and the fact that NIH funding was singled out for an increase on a bipartisan basis by the Appropriations Committee. The bad news is that sequestration will wipe out all of these increases. The most likely outcome of the Senate appropriations process is a cut to NIH in the $1.5 billion range. While our community’s herculean advocacy efforts over the last several months are paying off — medical research funding is clearly receiving priority consideration — sequestration is sweeping away our progress. We must continue to fight this policy mistake, with its 10 years of consequences. Take a minute right now to speak out to your representatives. And plan, on April 8, to join the research community at a Rally in D.C. to fight for medical research. Learn more here.

Another amendment offered to the Senate legislation would eliminate political science research at NSF by transferring those dollars to the National Cancer Institute. This amendment sets a dangerous precedent that threatens the integrity and value of research. For years, leaders in Congress from both sides of the aisle, including Research!America’s chairman, former Congressman John Porter, have fought off attempts by Congress to micromanage research. We must fight to keep research decisions off the House and Senate floors and in the hands of scientists and patients.

The House and Senate budget resolutions for FY14, which were also introduced this week, are emblematic of the problem we, as a country, face. The ideological divide is so great that “a grand bargain,” one that will balance the federal budget without decimating our economy and forsaking our determination to defeat disabling and deadly diseases, seems impossible. But Congress and the White House report to the American people. We can and must demand compromise between competing views of the government’s role, and we must stand up for priorities like fighting diseases that threaten our own and future generations. No more political party posturing usurping the governing process. No more across-the-board cuts. FY14 must bring with it pragmatism, prioritization and policy making that puts the country first. Norm Ornstein, resident scholar at the American Enterprise Institute, has penned a compelling op-ed in Roll Call capturing these sentiments.

Switching gears in this very big week, I’d like to thank all who were able to join us for yesterday’s Annual Meeting and Advocacy Awards dinner. We heard truly inspirational remarks from Sens. Richard Burr and Bob Casey, champions of the entire ecosystem behind U.S.-driven medical progress. Our other award winners — John Crowley, Diane Rehm, Dr. John Mendelsohn, Dr. Mark Rosenberg and the California Institute for Regenerative Medicine — are strong advocates for research; we salute their achievements.

Finally, as I announced at our Board meeting, I’m proud that Research!America has entered into a letter of agreement with our sister organizations in Australia, Canada and Sweden to ensure international collaboration by sharing best practices in advocacy for research for health. While our organizations operate in different countries and in distinctly different political environments, we have in common a fundamental commitment to making biomedical and health research a higher global priority.

Sincerely,

Mary Woolley

Research!America’s Advocacy Awards are tonight!

Research!America will honor extraordinary leaders in biomedical and health research advocacy at the 17th Annual Advocacy Awards tonight, March 13, at the Andrew W. Mellon Auditorium in Washington, DC. This year’s Advocacy Award Winners are: Sens. Richard Burr (R-NC) and Bob Casey (D-PA); Diane Rehm, author and host of WAMU 88.5 and NPR’s “The Diane Rehm Show”; John F. Crowley, patient advocate, inspirational entrepreneur, and chairman and CEO of Amicus Therapeutics, Inc.; John Mendelsohn, MD, director, Khalifa Institute for Personalized Cancer Therapy and former president of The University of Texas MD Anderson Cancer Center; Mark Rosenberg, MD, president and CEO, The Task Force for Global Health; and the California Institute for Regenerative Medicine (CIRM).

“The leadership demonstrated by this year’s award recipients has inspired others to push boundaries to improve the health of Americans and maintain our competitive edge in science and innovation,” said Mary Woolley, president and CEO of Research!America. “As advocates, they have contributed significantly to making biomedical and health research a higher national priority.”

Follow Research!America on Twitter (@researchamerica) and visit our Facebook page to get more information about tonight’s event. Look for photos of the Awards Dinner on our Flickr account and video clips on our YouTube page in the coming days.

For more information about the honorees, visit www.researchamerica.org/advocacy_awards and read our latest press release. You can also follow news updates from our honorees. Read Senator Burr’s blog and news from Senator Casey; visit The Diane Rehm Show’s Facebook page; don’t miss the Crowley family’s website and Amicus Therapeutics news; keep up with news about Mendelsohn and the Institute for Personalized Cancer Therapy; Rosenberg and the Task Force for Global Health’s online news room is full of great information; and don’t miss CIRM’s blog.

A Weekly Advocacy Message from Mary Woolley: Don’t Settle for the “New Normal”

Dear Research Advocate,

Yesterday, the House passed a budget for the remainder of the fiscal year that includes this year’s cuts from sequestration along with an additional one percent across-the-board cut.  The bill now heads to the Senate for consideration, where we are likely to see higher funding levels than the House version, but with sequestration still in place. Congress seems anxious to avoid the brinksmanship and the government shutdown threats that have characterized past debates. While the less rancorous environment surrounding the CR is a welcome change, the complacency around sequestration is not.  As research advocates, we cannot let these cuts stand.

Sequestration isn’t a one-year cut, it is ten years worth of cuts, none of which are evidence-based.  We may be looking at the early stages of an elusive “grand bargain” as the president meets with Republican senators to discuss tax and entitlement reform – two key pieces for solving the deficit puzzle. Eliminating sequestration must be part of that bargain. In addition, we must ensure that funding for biomedical and health research, including the resources FDA needs to do its job, are assigned a high priority in fiscal year 2014. That should be reflected in the budget resolution and obviously in the FY 2014 funding bill.

None of this will be easy. Working together, advocates have raised the profile of medical research with policymakers and the media. We need to turn the volume up louder yet on it, while cultivating more champions in Congress.  Continuing to engage the media is part of that equation.  Some of the largest news outlets in the country including Fox News, NBC, and CBS, and a number that are new to our issue including Al Jazeera quoted Research!America when writing about sequestration’s impact on science. The Economist published a thoughtful piece about how cutting American health research will harm the world. Industry is adding its voice with an op-ed in Forbes coauthored by three legendary executives, including Research!America board member and former NIH director, Dr. Elias Zerhouni, Marc Tessier-Lavigne of The Rockefeller University and P. Roy Vagelos, Chairman of Regeneron Pharmaceuticals. I also want to highlight a letter that Dr. Herb Pardes, Executive Vice Chairman at New York Presbyterian and Research!America board member, sent to the President.  He captures the very themes that will anchor our advocacy going forward.

At the same time as policymakers were cutting federally funded research dollars, researchers were delivering another astonishing breakthrough – the real possibility of a functional cure for HIV. This remarkable achievement, bringing us a step closer to a world free from the scourge of HIV/AIDS, would not have been possible were it not for NIH funding that supported the research and development of anti-retroviral drugs. The CDC is also in the news, with troubling warnings about the spread of “nightmare bacteria” – germs that can be deadly because they are resistant to traditional medicines.  As CDC works to track and halt the spread of these germs and fulfill the numerous other public health functions for which they are responsible, the agency is not only contending with sequestration. Over the past several years, CDC has been subject to some of the deepest cuts of any health agency. Our Nation is fast approaching a tipping point.  Are public health and safety and the progress borne of medical innovation priorities, or not?

As many of you already know our annual events are coming up next week! Please join us for the Annual Meeting (free of charge to members) to hear remarks from Rep. Joe Kennedy (D-MA), a freshman member of Congress who is already championing research, and also John Crowley, CEO of Amicus Therapeutics. I hope to see you all at our Annual Advocacy Awards Dinner later that evening – seats are selling fast, but still available.

Sincerely,

Mary Woolley