21st Century Cures Act

This article was originally published on Medium . Thanks to a remarkable outpouring and mobilization of rare disease advocates, August 2016 will go down in the books as the “Summer of Cures.” While our journey on the “#Path2Cures” began three years ago, many, many advocates have been fighting for cures for much longer. Together, we’ve made incredible strides in our effort to deliver #CuresNow. Every story, every single voice matters, and we are grateful for your support and willingness to share your personal experiences with disease. It’s been a tremendous effort by the rare disease community and I am proud to report that we are closing in on the finish line. But we can’t get there without...
For athletes and spectators who are attending the Olympic Games this month, the threat of deadly antibiotic resistant bacteria is all too real. Recently the “bad bug” carbapenemase-producing Klebsiella pneumonia (KPC) was discovered in the waters off several beaches of Rio, where rowing, canoeing and swimming events are scheduled to occur. KPC is one example of antibiotic resistant bacteria, which already sicken at least two million Americans every year. If people visiting Rio for the Olympics become infected with KPC, they may bring it back home, quickly spreading this dangerous bacterium around the world. Without support for new antibiotic R&D, such as the 21 st Century Cures Act,...
Dear Research Advocate: Today, the House Labor-HHS appropriations subcommittee marked up its FY17 funding bill, which includes funding for NIH, CDC and AHRQ. NIH received a $1.25 billion increase, $750 million less than the Senate increase. Given the subcommittee’s overall budget allocation ($569 million below fiscal year 2016) and the more conservative funding climate in the House, this is still an extraordinarily positive outcome. At the markup, Chairman Tom Cole (R-OK-04) noted that the $1.25 billion increase set a floor - rather than a ceiling - for NIH funding in FY17, a positive sign for potential negotiations with the Senate later in the process. The House Labor-HHS bill proposes a...
This article appeared online on The Huffington Post blog. Twelve years ago on Friday the 13th, Lorri Carey’s life changed forever. Her neurologist asked during one of her appointments “what do you know about ALS (amyotrophic lateral sclerosis)?” Carey was a healthy and active 37-year-old with a rewarding sales career, supportive husband and two sons when her health had taken a mysterious turn. Carey knew her symptoms matched ALS, but the only thing she remembered about ALS from her research was that it was fatal. And in fact, she was told she only had two to five years to live. “The toughest part was telling my two sons who were eleven and thirteen that I was going to die. When ALS hits a...
Dear Research Advocate: Vice President Joe Biden continued the drumbeat for the Cancer Moonshot with a visit to Research!America member Johns Hopkins University on Tuesday. He spoke about the critical importance of the private sector in the discovery, development, delivery ecosystem. Indeed, from public-private partnerships to philanthropic donations, the private sector is an essential partner in the fight against deadly and debilitating diseases. Demonstrating both this point and his personal commitment to research, former New York Mayor --and Research!America Advocacy Award recipient-- Michael Bloomberg joined Sidney Kimmel and others in announcing a $125 million donation to create the...
Dear Research Advocate: With great pleasure, we made a big announcement this week -- Chairmen Roy Blunt (R-MO) and Tom Cole (R-OK-04) will be receiving the Whitehead Award at our Annual Awards Dinner on March 16 at the Mellon Auditorium. I hope you will be there to join us in honoring these champions for the tremendous commitment they have shown to advancing medical progress. By now you may have heard the news that the Cures initiative is on the move! The Senate HELP Committee released its plan to consider multiple pieces of legislation that support the same objectives as the House 21st Century Cures Act (HR 6). Senate HELP Committee Chairman Lamar Alexander (R-TN) announced the Committee’s...
Dear Research Advocate: Pope Francis’ visit to Washington has been a breath of fresh air, but now Congress must get to work and reach a funding agreement that avoids a government shutdown beginning October 1st. Didn’t we learn from the last shutdown, just two years ago? Young patients were turned away from clinical trials at NIH. Disease outbreaks were not monitored because CDC epidemiologists were furloughed. Drugs, devices and other medical products pending FDA approval were delayed. All of this -- and much, much more -- was then and is now, entirely avoidable. Advocates should not be complacent; a government shutdown screams “broken government,” and should not even be on the table...
Dear Research Advocate, Research!America is on the Hill and in the media continuing to make the case for timely action in Congress to boost medical progress. I appreciated the opportunity to discuss the 21st Century Cures Act and the Senate’s Innovation initiative in a recent issue of Roll Call . The bottom line is this: we need to keep this ball rolling. Congress has a notoriously short attention span - too many issues, not enough time - so advocates should not only be pushing for what they want to see in the Senate bill, they should be pushing to see a Senate bill ASAP. Unless you’ve managed to steer clear of all forms of media in recent days, you probably know that the first official...
Dear Research Advocate, This just in--the final version of the 21st Century Cures Act has been filed with the House Rules Committee in anticipation of a House vote next week. And to understate the news: it’s great!! The bill contains mandatory funding of $8.75 billion for the NIH Innovation Fund and $550 million for FDA. Compared to the version that passed the Energy and Commerce Committee, that’s $1.25 billion less for the Innovation Fund over five years. But considering what Reps. Upton (R-MI-06) and DeGette (D-CO-01) were up against in securing this supplemental funding stream, and thinking about what these dollars could mean for medical progress, the end result is a HUGE victory. Click...
The serendipitous discovery of penicillin by Alexander Fleming in 1928 transformed the course of modern medicine. Penicillin, followed by a series of other antibiotics, seemed to promise a world free of infectious diseases that once killed millions of people worldwide. Medical breakthroughs such as organ transplants and chemotherapy would not have been possible without the development of antimicrobials. Fleming warned, however, that microbes have the ability to, and inevitably will, develop resistance to antibiotics. It did not take long to prove him right, with drug-resistant strains appearing just within years after the introduction of penicillin, as was the case for many subsequent...

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Funding research gives all of us a better chance of living a healthier life.
Pam Hirata, heart disease survivor