Tag Archives: CDC

Americans Say Congress Should Take Swift Action to Assure Patients Benefit from Treatments and Cures for Diseases

New Poll Data Summary booklet reveals concerns among Americans about the pace of medical progress

AS15Majorities across the political spectrum say it is important that the new 114th Congress takes action on assuring the discovery, development and delivery of treatments and cures for diseases in the first 100 days of the legislative session (75% Democrats, 64% Republicans and 60% Independents), according to America Speaks, Volume 15, a compilation of public opinion polls commissioned by Research!America. As Congress considers numerous proposals in support of research, including the 21st Century Cures draft legislation aimed at speeding the delivery of lifesaving treatments to patients, it is notable to see public support in favor of accelerating medical progress.

“The new Congress has the opportunity to reinvigorate our research ecosystem and enact policies that will enable the private sector to expand innovation,” said Research!America Chair John Edward Porter. “Congress must work in a bipartisan fashion to realize the potential of promising studies to prevent and treat disease.”

An increasing percentage of Americans say the U.S. Food and Drug Administration (FDA) should move more quickly in order to get new treatments to patients, even if it means there may be risks. In 2015, 38% favor faster regulatory review, compared to 30% in 2013. Meanwhile, 25% say the FDA should act more slowly in order to reduce risk, even if it means patients may wait longer for treatments.  Another 19% are undecided on this question and 18% do not agree with either position.   Continue reading →

Statement by Research!America president and CEO Mary Woolley on President Obama’s State of the Union Speech

In his State of the Union address, President Obama highlighted the important role of research and innovation in growing a more prosperous and healthier nation. We’re excited about the launch of the Precision Medicine Initiative, which comes at a time when the challenge of conquering disease – all along the research spectrum, from discovery to translation to innovation and application – has never been more within our grasp. The inspiring story of William Elder, Jr. a medical school student and cystic fibrosis survivor, shows that science can deliver breakthroughs for patients with cystic fibrosis, cancer, Alzheimer’s and other diseases. The remarkable ability of our nation’s researchers to advance precision medicine to hone targeted treatments to improve individual patient outcomes is a compelling example of what can be accomplished with federal support. We’re getting closer and closer to achieving treatments that save time, save money and save lives because they are right the first time.

We can’t afford to ease up on our commitment to research, to assure we can put a whole range of diseases in the history books. A further reason, noted by the President, is that we need robust funding and policies to ensure we’re not behind the eight ball addressing domestic or global outbreaks like Ebola. Current funding levels for federal health agencies put researchers at an extreme disadvantage in pursuing studies that have the potential to cure disease and improve quality of life, and tax policies have stymied the development of new drugs. Policymakers must pivot from short-sighted thinking to formulating a long-term strategy that will bring new treatments across the finish line and spur growth in quality jobs. We think it’s past time to adopt a national strategy that will assure the U.S. retains its world leadership in science and innovation. A new Blue Ribbon Commission established by Congress to explore how science is perceived by the public will help stimulate a meaningful conversation with Americans about the societal and economic benefits of science. Continue reading →

Research!America urges the 114th Congress to Advance Top 5 Science Priorities in First 100 Days

Today, Research!America urged the 114th Congress to take action on five science priorities in the first 100 days of the legislative session in order to elevate research and innovation on the nation’s agenda:

  • United States Capitol BuildingAdvance the 21st Century Cures Initiative. Spearheaded by Representatives Fred Upton (R-Mich.) and Diana DeGette (D-Colo.),the initiative is a promising step in the right direction, focusing on speeding medical progress from bench-to-bedside by integrating patient perspectives into the regulatory process, modernizing clinical trials, and reducing red tape, among other things.
  • Repeal the medical device tax. A provision in the Affordable Care Act, efforts to repeal the medical device tax have garnered bipartisan support as policymakers and industry leaders raise concerns about the tax’s impact on jobs and innovation.
  • Enhance and make the R&D tax permanent. The credit, established in 1981, allows companies to deduct certain research expenses, but the short-term extensions have created uncertainty for businesses that rely on long-term planning for research investments.
  • Eliminate Sequestration. As part of the 2011 Budget Control Act, sequestration has taken a significant toll on the research ecosystem, forcing institutions to scale back or eliminate important studies and cut jobs.  A two-year bipartisan budget deal for FY14 and FY15 reduced the cuts for those years, but the full sequester returns in FY16.

Continue reading →

A Weekly Advocacy Message from Mary Woolley: 2015: Pragmatism over politics

Dear Research Advocate:

As America rings in the New Year, many of us will be reflecting on the past and making resolutions for the future. To get a feel for the numerous ways in which NIH, CDC, AHRQ, NSF and FDA contributed to the well-being of Americans and others throughout the world in 2014, click here. I hope lawmakers are taking time now to establish New Year’s resolutions and set priorities for the new Congress, which convenes one week from today. My biggest wish for the new Congress?  Pragmatism over politics. If pragmatism rules, the next Congress will shake off the stultifying complacency that is weighing our nation down and act to reignite U.S. innovation. More here.

One reason pragmatism is so crucial is that it accommodates complexity. It would be terrific if the benefits of medical research and innovation could be catalogued like books in the library, but as Norm Augustine explains in The Journal of Clinical Investigation, no can do. The quantifiable benefits of research can stretch so far into the future and be so wide-ranging that it is nearly impossible to fully capture them. And not all the benefits are quantifiable. Policymakers are understandably interested in hard data to help predict the return on federal investment, but that doesn’t mean the value of science can’t be meaningfully conveyed to them. Norm’s commentary is an important reminder that as advocates, we should be prepared to defend science against inadequate estimates of its impact. It also speaks to our role in bridging the distance between scientific progress and such human values as compassion, empathy and curiosity. Pragmatic means logical and reasonable, not “monetizable.”  Continue reading →

A Weekly Advocacy Message from Mary Woolley: “Congress: Strong letter follows… “

Dear Research Advocate:

So much is troubling our nation – evidenced in protests of recent grand jury decisions and the controversy over release of the Senate’s report on the CIA – that most people probably haven’t noticed or cared that the Congress is delaying and may even abort action on the long overdue funding of the federal fiscal year that began on Oct. 1.  People have grown tired of Congress missing self-imposed deadlines, only to say they can only act in the face of those deadlines, and now they are talking of doing it again.  And thus we are lulled into thinking it doesn’t matter what the Congress does.  But that would be wrong: priority-setting by the Congress plays a major role in determining the economic security and health status of the nation and everyone in it.

Right now, Congress is keeping the nation in limbo, and not just when it comes to funding deadlines. “How low can we go” does seem to be the theme of the appropriations process. If the currently negotiated plan is adopted and signed into law – and that is a big if – the good news is that one-time supplemental funding will be allocated to NIH, CDC and other agencies to work on advancing Ebola-related research and clinical trials. That aside, NIH and CDC would receive razor thin increases compared to FY14, as noted in our statement about the “Cromnibus.” NSF and FDA fare slightly better with increases reaching the level of full percentage points, 2.4 percent and 1.4 percent, respectively. AHRQ is slated to receive a decrease of .08 percent, but, importantly, the agency will at long last be given budget authority, i.e., will not have to rely on passing the hat, so to speak, to other agencies to help fund it. Now Congress must take AHRQ to a higher level of support if we are ever to get our arms around inefficiencies in health care delivery. Continue reading →

Statement by Research!America President and CEO Mary Woolley on FY15 Cromnibus Spending Bill

The tiny increases included in the “Cromnibus” bill for the National Institutes of Health (NIH) and our nation’s other health research agencies are just that. The underwhelming support for the NIH, the Centers for Disease Control and Prevention, the National Science Foundation and the Food and Drug Administration following years of stagnant funding and budget cuts begs the question – how low can we go, given health threats the likes of which stand to bankrupt the nation?  And the decision to flat-fund the Agency for Healthcare Research and Quality does not provide what it takes to reduce the much-complained of inefficiencies in our health care system. The pain and economic drain of one disease alone – Alzheimer’s – is not going to be effectively confronted without stronger investments in research. Every American who wants to see our nation overcome health threats, create jobs and shore up our economy for sustained prosperity must make it clear to the next Congress that it can and must do more, making research and innovation a strategic national priority.

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World AIDS Day 2014: Focus, Partner, Achieve: An AIDS-free Generation

World AIDS day, commemorated each year on Dec 1, aims to raise awareness about the virus, encourage advocates to redouble efforts to fight the epidemic, and remember those who have died and continue to suffer from the disease.

Photo credit: cdc.gov

Photo credit: cdc.gov

The 2014 World AIDS day theme “Focus, Partner, Achieve: An AIDS-free Generation,” speaks to how combined efforts and collaborations can bring us closer to a cure or vaccine. For example, public and private-sector funded research led to the development of Highly Active Antiretroviral Therapy (HAART), which revolutionized the battle against HIV/AIDS according to Research!America’s HIV/AIDS fact sheet.

Medical research has played a critical role in reducing the risk of transmission and has led to new drugs that have transformed HIV/AIDS from a fatal to a chronic illness for millions worldwide. Patients like Maria Davis, professional entertainer and HIV/AIDS advocate, has benefited from advances in HIV/AIDS treatments.

Research!America member, amfAR, The Foundation for AIDS research and The Centers for Disease Control and Prevention are raising awareness on World AIDS Day by providing up-to-date resources and information describing the human and economic impact of HIV/AIDS. In FY14, U.S. federal funding to combat HIV/AIDS here and abroad and assist those affected by the disease totaled $29.5 billion, but more resources and funding are needed to tackle this global epidemic. Tell Congress that we need more funding for HIV/AIDS research today!

To find out more about the events happening on Dec. 1, visit http://aids.gov/

Early-Career Public Health Professional: Sasha McGee

In honor of Public Health Thank You Day we will be highlighting public health professionals throughout the day today.  Our first professional is Sasha McGee, Ph.D., M.P.H., epidemic intelligence service officer at the Centers for Disease Control and Prevention, assigned to the District of Columbia Department of Health.

SashaWhat drew you to a career in public health?

My earliest educational and research experiences were guided by my passion to pursue a career in which my work would contribute to the improvement of health. After completing my doctoral training, I knew that I did not just want to conduct research but to participate in the translation of data into interventions that would benefit large populations. The field of public health seemed to be the perfect choice in terms of having the opportunity to both investigate and address health challenges.

What do you enjoy most about your current position as an early career public health professional?

What I enjoy most about my current position is the opportunity to participate in projects on a wide range of topics — I am always learning something new and no day is ever the same. I also appreciate the collaborative nature of my work. Continue reading →

Research!America and Partners Salute Heroes on the Front Lines of Public Health

Public Health Thank You Day, November 24, 2014

ALEXANDRIA, Va.-November 20, 2014-As Thanksgiving approaches, Research!America and leading U.S. public health organizations urge Americans to salute public health professionals who go above and beyond to protect the health of our nation. Public Health Thank You Day honors all those unsung heroes who keep our drinking water safe and air clean, develop vaccines, track and investigate infections, and protect us against  threats  such as influenza, the Ebola and Enterovirus D68 outbreaks and natural disasters.

“Every day, public health professionals here and around the world work in challenging and sometimes dangerous situations to protect our health.  The Ebola epidemic in West Africa and cases of Ebola in the U.S. are a reminder of the global nature of public health threats,” said Thomas R. Frieden, M.D., M.P.H., director of the Centers for Disease Control and Prevention (CDC). “Whether they are working to keep us safe from infectious disease threats, or finding ways to promote healthy opportunities, thanks to all the dedicated public health professionals who work to keep us safe and healthy.”

These everyday heroes include our health inspectors, environmental health scientists, laboratorians, epidemiologists, public health researchers, sanitation workers, nurses and many other dedicated workers. The CDC, local health departments and various institutions within our public health infrastructure have come together to address recent outbreaks, and public health professionals are tackling these threats head-on – as they do with other health challenges on a daily basis. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Time to be honest with ourselves

Dear Research Advocate:

This week’s CDC announcement of the worst-case Ebola scenario is staggering. Saying, “Let’s be honest with ourselves …” President Obama addressed the UN this morning on the escalating threat posed by Ebola, urging world leaders to work together to address this truly global crisis. The Biomedical Advanced Research and Development Authority (BARDA) program, which received additional funding for Ebola drug development as part of the recently passed continuing resolution (CR), is a terrific example of how the public and private sectors can work together to develop drugs for national and global health threats like Ebola. BARDA provides market incentives so that private sector innovators can work on noncommercial emergencies. It’s a cost-effective strategy since it precludes the need for government to build drug development capacity the private sector already has, and it’s a good reminder that medical and health research is not about government funding, academic research, or private sector R&D. It’s about all of these things and all of us, working together to save lives.

Let’s be honest with ourselves about something else: policies that cripple private sector investment in research are stifling science.  One such policy involves the research and development (R&D) tax credit, which – despite historical bipartisan support – expired at the end of 2013 and has not been reinstated. Businesses of all sizes across a wide swath of scientific sectors rely on predictable, annual extensions of this tax credit (not that annual extensions are ideal; Congress would also be wise to finally make this credit permanent). Please consider sending a message to your representatives about the importance of reinstating and enhancing the R&D tax credit. Here are two good resources, one nationwide quantitative analysis from the National Association of Manufacturers and one qualitative account of the effects on businesses in Pennsylvania. Members of Congress must work together and quickly upon their return to Washington after the election to not only reinstate the R&D tax credit, but to enhance its reach and effectiveness. And they must pass an appropriations package that recommits to scientific innovation. Note I use the word “must,” not “should.”  When one assumes the role of leader, displaying leadership should not be an option.

And let’s be honest that we are under-investing in our federal research agencies. Determined to alter this state of affairs, Rep. Brian Higgins (D-NY-26), along with Rep. Rosa DeLauro (D-CT-03), recently introduced the Accelerating Biomedical Research Act in the House. The congressman is using some of his district work period/campaigning season to tour institutions that receive NIH funding in his district. If only more incumbents and challengers followed his example!  Rather than despairing that there aren’t more like Mr. Higgins, now is the time to work toward the day that there will be! Candidates who hear voters like you speak passionately now about the importance of advancing medical progress are more likely to become champions for research when they enter Congress next January. Personal stories about why research matters in your life and in your community make for some of the most persuasive advocacy tools.

Let’s be honest that along with personal stories, data truly is important (my advice: tell your story first, after that, add data). Consider the new easy-to-use district-level federal research funding fact sheets from the Federation of American Societies for Experimental Biology (FASEB). These local, by-the-numbers summaries provide information about the number of grants received in nearly 400 congressional districts from the NIH, NSF, DOE Office of Science, and Agriculture and Food Research Initiative in the Department of Agriculture and are useful additions when making your case for research.  We urge you to share this data as well as your commitment to voter education with five of your friends and family!  Join us in the “5 this Fall” campaign on social media.

Final note of honesty about social media … it works! Think “Ice Bucket Challenge” and think about the new ACT for NIH campaign, which is using “selfies” as a way to remind voters and policymakers that research is for everyone, leading to better lives for ourselves, our friends and our loved ones. Reaching an ever-expanding audience via social media is critical. I hope you’ll join Act for NIH by sharing a selfie on social media with the hashtag #ACT4NIH.

Mary Woolley

Federal Health Agencies Ramp Up Efforts to Fight Ebola

Colorized transmission electron micrograph revealing some of the ultrastructural morphology displayed by an Ebola virus virion. Photo credit: Frederick A. Murphy

The Centers for Disease Control and Prevention (CDC) sent more than 50 disease detectives and other highly trained experts to West Africa to battle Ebola. While here in the U.S., more than 350 CDC staff are working on logistics, communications, analytics, management and other functions to support the response 24/7 at CDC’s Emergency Operations Center.“We are fulfilling our promise to the people of West Africa, Americans, and the world, that CDC would quickly ramp up its efforts to help bring the worst Ebola outbreak in history under control,” said CDC Director Tom Frieden, MD, MPH.  “We know how to stop Ebola.  It won’t be easy or fast, but working together with our U.S. and international partners and country leadership, together we are doing it.” Read more here.

Meanwhile, researchers at the National Institutes of Health (NIH) and the National Institute of Allergy and Infectious Diseases (NIAID) are studying Ebola and seeking better ways to diagnose and treat the disease. In 2013, the NIAID reported spending $42.49 million on Ebola research. Public-private partnerships are critical to containing and preventing such deadly outbreaks. The NIAID is collaborating with Okairos, a biotech company, to develop Ebola vaccines. The NIH is working with the drugmaker Mapp Biopharmaceutical to scale up production of its Ebola drug Zmapp and partnering with BioCryst to advance the company’s experimental treatments. 

Sustained and robust federal funding is needed to respond to global health threats, and to support the development of vaccines to combat Ebola and other deadly diseases. Policymakers must assign a higher priority to medical research to ensure the health and wellness of Americans.

Click here to urge your representatives to support increased funding for federal health agencies in FY15.

 

A Weekly Advocacy Message from Research!America: Flat won’t get the job done

Dear Research Advocate:

Today, Chairwoman Barbara Mikulski (D-MD) released the Senate’s 302(b) allocations, which were approved by the Appropriations Committee. As you know from last week, the House 302(b) allocation for the Labor-HHS subcommittee is approximately $1 billion less in fiscal year 2015 than it was in FY 14.The Senate’s allocation for FY 15 is roughly the same as it was in FY 14. The bottom line is that, as expected, we have our work cut out for us to achieve the increases needed for the National Institutes of Health (NIH) and our nation’s other health research agencies. Fortunately, Senator Mikulski and other leaders from both sides of the aisle understand the importance of investing in research to drive U.S. innovation.  That doesn’t reduce advocates’ workload, but it makes success more than a longshot.

Earlier this week, both the House and the Senate Appropriations subcommittees on Agriculture considered bills that would fund the Food and Drug Administration (FDA) in FY 15. The House version calls for a $23 million increase (less than 1%) while the Senate version provides a $36 million increase. While appropriators deserve credit for finding additional dollars for the FDA given overall FY 15 budget constraints, this agency’s responsibility for protecting the very safety of Americans requires more dollars than this.  Continue reading →

A Weekly Advocacy Message from Research!America: The good, the bad, and the ugly

Dear Research Advocate:

Congress continues to pay particular attention to – and make decisions bearing on – the pace of medical progress. To briefly count the ways:

The Senate Labor-HHS Appropriations subcommittee heard testimony yesterday from agency heads within HHS about the significance of health-related spending, including spending on medical and health research. Read our written testimony here.

Congressman Upton (R-MI-06), the Chair of the House Energy and Commerce Committee (which has jurisdiction over authorizing legislation for NIH, CDC, FDA and AHRQ) and Congresswoman Diana DeGette (D-CO-01), a member of the Committee, launched their 21st Century Cures initiative with a roundtable discussion focused on identifying what actions are necessary to maintain our nation’s place as the world’s innovation leader. While Reps. Upton and DeGette are champions of research who should be commended for working to strengthen U.S. medical innovation, there is always the risk that Congress will veer into micromanagement of NIH, stymie FDA’s efforts to ensure that private sector innovators are rewarded for ensuring the safety and efficacy of their medical advances, or “hold off” on providing the funding needed to accelerate medial progress until  longer-term strategies are in place. Your participation can help make this effort a success, and the initiative has established an email address you can use if you wish to give input: cures@mail.house.gov.

So that’s the good. Continue reading →

A Weekly Advocacy Message from Research!America: Talk is cheap; bipartisanship is priceless

Dear Research Advocate:

The doubling of the National Institutes of Health budget between FY99 and FY03 is an example of Congress at its most productive … and it hinged on bipartisanship. A small group of Republicans and Democrats recognized the power of medical progress, and they worked together to increase the budget baseline for NIH by nearly $11.5 billion. Without that doubling, and with the stagnation of virtually all non-defense discretionary funding that followed on its heels, which groundbreaking medical discoveries would still lie dormant? Which of those we hold dear would not be alive today?

Research!America Chair and former Congressman John Porter, who chaired the House Labor-HHS Appropriations Subcommittee, was one of a relatively small group of champions on that bipartisan team. On Monday, March 31, the National Institutes of Health held a dedication ceremony for the John Edward Porter Neuroscience Research Center. NIH Director Dr. Francis Collins, Senators Tom Harkin and Mark Kirk, renowned researchers and NIH alumni Dr. Gerald Fischbach and Dr. Steven Hyman, and other distinguished leaders paid tribute to Congressman Porter, acknowledging his staunch commitment to bipartisanship and his extraordinary contribution to advancing medical research. As Congressman Porter emphasized during his remarks, the two are not unrelated. The severe partisan divide in Congress has served to perpetuate the stagnation of NIH resources, both by compromising the deliberative process that is meant to inform the prioritization of appropriated dollars and by stymying tax and entitlement reform. Scientists must fight back, buoyed by the high esteem in which they are held by the public and armed with unique insights into the societal benefits of investing in research. View photos of the dedication ceremony here and our statement here. Continue reading →

A Weekly Advocacy Message from Mary Woolley: The role of advocates in the appropriations process

Dear Research Advocate:

There is still time — if you act quickly — to urge your representative to sign on to the House letter authored by Representatives McKinley (R-WV-01), Davis (D-CA-53), Carson (D-IN-07) and King (R-NY-02) urging more support for NIH — it will be finalized by close of business today. A similar Senate letter, authored by Senators Casey (D-PA) and Burr (R-NC), will be finalized Tuesday, April 1; ask your senators to sign on today!

An appropriations mechanism known as a “tap” made the news Tuesday when, during a hearing on NIH, Members of Congress asked advocates questions about the use of a tap by the Department of Health and Human Services (HHS) to move money from the NIH appropriation to fund the Agency for Healthcare Research and Quality (AHRQ) and for other uses. While it can sound as though HHS makes this allocation on its own initiative, actually it is the Appropriations Committee that has determined to fund AHRQ in this way, rather than funding it as an independent agency or otherwise. Bottom line, the funding mechanism isn’t what’s at issue here — the real question is whether AHRQ serves the interests of Americans. And it certainly does. As noted in our testimony submitted for the hearing at which the tap issue was raised, AHRQ supports lifesaving, quality and efficiency-enhancing health care research. Like NIH, AHRQ meets our nation’s need for basic non-commercial knowledge, while the private sector finances the critical, commercial R&D that brings final products to the market.

Continue reading →