21st Century Cures

Dear Research Advocate, The shocking attacks in Beirut and Paris serve as reminders of the global interconnectedness of our society. In so many ways, the tragedies others face are also ours and their challenges are our challenges, health challenges very much included. Last evening I interviewed Dr. Tamar Kokashvili, a grantee of CRDF Global, at their 20th anniversary dinner. Dr. Kokashvili, who hails from the nation of Georgia, collaborates with University of Maryland scientists to characterize genetic diversity of cholera bacteria (over 200 strains, complicating both diagnosis and treatment). Just in the last few weeks we have learned of cholera outbreaks in Syrian refugee camps, and...
Over the course of his last few weeks before retiring, Speaker Boehner worked with fellow House and Senate leaders and the President to fashion a budget deal that increases the nation’s debt limit and provides an additional $80 billion above sequestration-level spending caps. Both non-defense and defense programs will receive $25 billion more in fiscal year 2016 (FY16) and $15 billion more in FY 2017. The House has passed this budget plan, and the Senate is expected to follow suit by Tuesday. See our statement . Passing this deal is step one. Step two is allocating top-line budget numbers across the 12 appropriations subcommittees (these allocations are known as “302(b)s”). This will likely...
Dear Research Advocate: Advocacy works. More members of Congress are speaking out in support of research, including at a Senate Labor-H Appropriations Subcommittee hearing featuring testimony from NIH Director Francis Collins and several NIH Institute Directors. Appropriations Committee Vice-Chairwoman Barbara Mikulski (D-MD) summed up the limitations created by the sequestration caps succinctly: “We cannot cap innovation, we cannot cap breakthroughs.” Labor-H Subcommittee Chairman Roy Blunt (R-MO) underscored the point that both the subcommittee and full appropriations committee support biomedical research as a high priority. The subcommittee’s Ranking Member Patty Murray (D-WA) spoke of...
National Patient Advocate Foundation (NPAF) represents the patient’s voice nationwide, particularly those struggling with chronic, debilitating or life-threatening illness. As the advocacy affiliate of the Patient Advocate Foundation, which provides free case management and copay relief services to thousands of patients across the country, we translate the experience of patients who have been denied access to affordable, quality health care into national and state policy initiatives. The patients served by the Patient Advocate Foundation often experience major financial barriers to accessing the care they need. Because the majority of these patients are insured, these barriers manifest...
Could a 21 st Century Cures bill that modernizes the research ecosystem cross the finish line in Congress in the near future? We’re moving in the right direction, according to most of the panelists featured in POLITICO Pro’s “How Fast to Cures?” discussion on October 7, 2015 at the Newseum in Washington D.C. “For the first time in decades, with the House bill of 21 st Century Cures and with the Senate companion piece that they are working on, we’re seeing a revving up of our full ecosystem of discovery, development and delivery of medical progress that incorporates the patient community in ways that we’ve never seen,” said Mary Woolley, president and CEO, Research!America. Advocates should...
Dear Research Advocate, Throughout its 26-year history, Research!America has been fortunate to attract extraordinarily gifted and dedicated national leaders to its Board of Directors. One such leader, the Honorable Louis Stokes, passed away on Tuesday . A powerhouse lawyer, founding member of the Congressional Black Caucus, skilled appropriator, and able chair of the House Ethics Committee, Lou was also a stalwart advocate for medical research and promoted efforts to address health disparities; in so many ways, Lou created a better future for all of us. Our fight for medical progress is, and will continue to be, part of his legacy. Current board member Dr. Herb Pardes wrote a compelling...
This op-ed appeared online on Roll Call July 31, 2015. New technology such as CRISPR-Cas9, a genuine scientific breakthrough, is raising hope for patients with cancer, cystic fibrosis, sickle-cell anemia and other major health threats. The gene editing tool, used in precision medicine, allows changes to be introduced into the DNA of any living cell— potentially enabling repair of disease causing mutations, neutralization of disease carrying insects, and much more. This technology, developed with support from the National Institutes of Health (NIH) and National Science Foundation (NSF), is an example of the realization of the promise of innovative research funded by our federal science...
Dear Research Advocate: Congress has postponed further action on patent reform. Concern over provisions in the legislation poured in from a broad coalition within the life sciences community, including universities, patient advocates, and the pharmaceutical and biotech industries. BIO’s Jim Greenwood and PhRMA’s John Castellani penned a compelling op-ed on the topic for The Hill . Now there is more work to be done as policymakers and advocates continue the conversation about reforming our nation’s patent system. Stay tuned. Momentum for a two-year extension of the R&D tax credit is building in the Senate. The Senate Finance Committee, spearheaded by Senator Orrin Hatch (R-UT), voted...
Dear Research Advocate, The “moment” for research that we’ve been experiencing on Capitol Hill is being echoed by Presidential candidates; is this perhaps the start of a wave of conversation on the campaign trail? On Tuesday, the Senate Commerce Committee, which is not the committee of jurisdiction for NIH or FDA, or intellectual property, held a hearing on these very topics. Committee Chairman and Presidential candidate Ted Cruz (R-TX) framed the hearing as an opportunity to explore strategies for speeding cures to patients. The hearing might have devolved into an “FDA regulation is bad” fest, and to be honest there was some of that, but the Senators present, along with the witnesses,...
The July/August 2015 issue of The Research Advocate is now online . Highlights from this month's issue include: A federal policy update with details on the House passage of the 21st Century Cures Act. An article on the Lupus Foundation of America's awards dinner honoring Research!America's president and CEO, Mary Woolley. A member spotlight featuring the Gates Center for Regenerative Medicine. Details on upcoming events in Washington, DC, such as Research!America's National Health Research Forum, Rally for Medical Research Hill Day and the 2015 Golden Goose Awards Ceremony. Download the entire July August 2015 Research Advocate as a PDF.

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You can change the image of things to come. But you can’t do it sitting on your hands … The science community should reach out to Congress and build bridges.
The Honorable John E. Porter