Cures

Dear Research Advocate, On Tuesday, I had the great honor of attending the bill signing for the 21st Century Cures Act (21stCC). It was particularly meaningful that this bill crossed the finish line during Vice President Biden’s tenure. His determination to deliver other families from the cancer tragedy experienced by his own lent a special strength to our collective efforts over a protracted period of congressional debate. If we continue to channel the Vice President’s level of commitment and determination, we can ensure that achieving faster medical progress remains at the forefront of national priorities. As you know (but it never hurts to reaffirm), it is important, but not sufficient,...
Dear Research Advocate, Last Friday, while many of us were still savoring a relaxing and enjoyable Thanksgiving, the House released their revamped version of the 21st Century Cures Act. Check out our most recent letter of support and our full statement for more details. Last night, it passed the House by an extraordinary bipartisan majority of 392-26, exceeding even the majority it achieved in its original passage in July 2015. The new Cures package unleashed an avalanche of activity: Mark McClellan, director of the Duke-Margolis Center for Health Policy, former FDA commissioner and Research!America board member, and Ellen Sigal, chair and founder of Friends of Cancer Research, and former...
Today, Research!America sent a letter to House and Senate leadership in support of the 21 st Century Cures Act, legislation that encourages the discovery, development and delivery of new treatments and cures for patients. A new version of the 21st Century Cures bill (21stCC) has been introduced, with a strong chance that this bipartisan legislation will pass both Houses of Congress, and that President Obama will sign it into law shortly thereafter. Chairman Fred Upton (R-MI-06) has requested that organizations and individuals send letters by Wednesday, November 30 at 1:00 p.m. ET . We encourage advocates to send a letter and voice support for this important legislation. Click here for a...
Dear Research Advocate, As we prepare to celebrate Thanksgiving, it is fitting to thank our public health workforce for their tireless efforts on our behalf every day of the year. Monday marked the official Public Health Thank You Day (PHTYD), but it is ongoing. This year’s effort has been extraordinary, with more than 50 organizations partnering with us to get the word out. For the first time since we launched PHTYD in 2005, Congress officially joined the effort. As I mentioned last week, the co-chairs of the House Public Health Caucus introduced a resolution supporting PHTYD. Online, more than 1,000 organizations and individuals participated, including federal officials from HHS and DOD,...
Dear Research Advocate: This week, I joined host Alex Philippidis to discuss the challenges the next President will face on Genetic Engineering & Biotechnology News’ Sounds of Science podcast. Not only are there policy decisions to be made, but the President’s transition team must also address more than 4,000 political appointments. Conversations are well underway, but it's not too late to suggest outstanding candidates, including people already in the government, perhaps ready for a new role. I encourage you to toss your own hat in the ring as well if you are hearing a call to public service. (Use this guide to learn more about the transition process and this resource to find out who...
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...
“Delivery” has been in the spotlight this week as part of our #CuresNOW advocacy month. The delivery aspect of the discovery-development-delivery research pipeline is broad territory, from the research that informs improvements in our health care delivery system; to connecting patients to the right treatments at the right time, the first time; to creating a platform for new discovery and development to keep the cycle in motion, and the patient foremost in mind. Delivery week has included a blog post with testimonials about living with hydrocephalus, a new fact sheet on chronic kidney disease (CKD) and lots of action on social media -- including Research!America staffers sharing selfies...
Dear Research Advocate: World-class athletes are getting ready to go for the gold in Rio. No one is going for copper, but researchers have found that in healthcare settings, this mineral is a champion when it comes to reducing the spread of antibiotic resistant bacteria (one of several public health threats that has received attention in the run-up to the Games). If you are looking for an example of the return on research, this article about the role of copper in reducing hospital associated infections provides an excellent one. Years of investment in research, from discovery science through to trials, can and will pay off for the public with every expectation of many more lives saved in...
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...
Dear Research Advocate: The news from the CDC this week is concerning. For the first time in over a decade the overall, all-cause mortality rate for the U.S. is higher than in the preceding year. This unexpected news comes on the heels of last week’s announcement confirming the first U.S. case of an E. coli infection resistant to colistin, a last-resort antibiotic, reminding us of just how important it is to curtail and outpace antimicrobial resistance. And we have word of the second baby born in the U.S. with microcephaly due to Zika, as well as a new estimate that 300 pregnant women in the U.S. have the virus. On their own, each of these stories should serve as a wake-up call for...

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Sidebar Quote

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