Category Archives: National Institutes of Health

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 →

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A Wish List for the 114th Congress to Consider

By Caleph B. Wilson, Ph.D., a biomedical researcher at the University of Pennsylvania, logistics director of the National Science Policy Group, science communicator and STEM outreach advocate. Follow him on Twitter as @HeyDrWilson.

CalephWith the 114th Congress underway, the scientific community is looking forward to sharing new research breakthroughs and advocating for STEM during a series of congressional visits to Capitol Hill. In some instances, scientists and trainees will assist writing congressional briefs and give testimony to House and Senate committees on science, technology and health.

While Congress is considering science policy initiatives, positions and funding, there are a few things in the early-career scientist “wish list” that would make improvements and maintain the United States’ leading position in the scientific enterprise.

Throughout 2014, early-career scientists discussed specific issues in science policy groups, on social media and in articles that need to be addressed. These are some of the highlights of the conversations that have been put in a “Wish List” that hopefully Congress and policymakers will strongly consider.

  • National Science Foundation (NSF) and National Institutes of Health (NIH) funding that is predictable and keeps pace with inflation.

In the early 1990s, the NIH budget increased dramatically. However, over the last 10 years the NIH budget has flat-lined and even decreased at times. Unfortunately, the budget has not kept pace with inflation and rising costs of executing experiments. With changes in the economy and the sweeping budget cuts that came in with sequestration, government agencies, institutions and investigators can better plan with predictable budget appropriations that keep pace with scientific opportunity. Continue reading →

Federal Health Agencies 2014 Year in Review

Photo credit: NIH.gov

Photo credit: NIH.gov

From advances in diabetes research to record approval of drugs to treat rare diseases, taxpayer funded research and the effective employment of regulatory tools played a significant role in improving the health and wellbeing of Americans in 2014. Below is a year-end roundup of research highlights and scientific achievements from the National Institutes of Health, Centers for Disease Control and Prevention, National Science Foundation, Food and Drug Administration and Agency for Healthcare Research and Quality.

To fuel this momentum in scientific discovery and development, policymakers must commit to robust funding for the federal health agencies and policies that support private sector innovation. Take action today and tell your elected officials to make research for health a higher national priority in the 114th Congress.

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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Chilling Reality. What’s next for ALS?

The Ice Bucket Challenge raised more than $100 million for ALS research, but turning money and enthusiasm into therapies and cures for the deadly disease is an entirely different type of challenge.

Research!America President and CEO Mary Woolley was among the guests on BioCenturyTV This Week on October 19 to discuss the ALS Ice Bucket Challenge, our national voter education initiative Ask Your Candidates! and the need for stronger support for medical research.

We need to make sure to tell the people we’re hiring to serve in Congress that it’s really important to fund research for health, and right now is a good time to be doing that,” said Mary Woolley.

Other guests included:

  • Dr. Brett Morrison, a physician and assistant professor of neurology at Johns Hopkins University
  • Richard Garr, CEO of Neuralstem, a company that is conducting trials of a stem cell therapy for ALS
  • Benjamin Corb, director of public affairs at the American Society for Biochemistry and Molecular Biology

MW BioCenturyTV

Fear of vision loss top concern among Americans across all racial and ethnic groups

Stagnant funding could threaten progress in eye research

AEVR eventAmerica’s minority populations are united in the view that not only is eye and vision research very important and needs to be a national priority, but many feel that current federal funding ($2.10 per person, per year) is not enough and should be increased. This may stem from the evidence that most minority populations recognize to some degree that individuals have different risks of eye disease depending on their ethnic heritage.

And while these Americans rate losing their eyesight as having the greatest impact on their daily life and having a significant impact on their independence, productivity and overall quality of life, 50 percent of Americans who suffer from an eye-related disease are not aware of it.

These statics and more were the topic of discussion at a press event in Washington, D.C., today, where members of the media and leaders in the eye and vision research community gathered to interact with a panel of experts and weigh in on the topic of The Public’s Attitudes about the Health and Economic Impact of Vision Loss and Eye Disease. Continue reading →

Promising Research Can’t Stall for Lack of Funding

Excerpt of a joint op-ed by Research!America President and CEO Mary Woolley and Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.

MW & JSFebruary 23, 1954, was a milestone in the history of American medical research. That day, children at Arsenal Elementary School in Pittsburgh lined up to receive injections of a promising vaccine. Within months, schoolchildren all over the country were doing the same, and polio was on its way to being eradicated in the United States. The disease, which had killed and paralyzed children and adults alike, would no longer be a threat.

This remarkable achievement would not have been possible without the work of Dr. Jonas Salk and his team at the University of Pittsburgh, and — equally significant — grant support from the National Foundation for Infantile Paralysis, now known as March of Dimes. Policymakers played a role, too, when the Polio Vaccine Assistance Act of 1955 made possible federal grants to the states for purchase of the vaccine and for the costs of planning and conducting vaccination programs.

A generation or two later, millions of individuals worldwide benefited from another major medical breakthrough. Remember when being diagnosed as HIV-positive was an automatic death sentence in the 1980s? Accelerated research supported by the National Institutes of Health (NIH), in partnership with Burroughs Wellcome and Duke University, resulted in the development of AZT, the first drug that slowed the replication of HIV. By 1987, the drug won FDA approval and marked the first major treatment in extending the lives of HIV/AIDS patients. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Deep thoughts occasioned by ice buckets

Dear Research Advocate: 
 
You have by now heard about the ALS “ice bucket” challenge (show support for ALS research by dumping a bucket of ice water over your head and/or writing a check for $100 to the ALS Association, then challenge three others to do the same.)  Whether viewed as a welcome late-summer distraction from imponderables like conflict in the Middle East, on-going clashes in Ferguson, Mo., or the mounting death toll from Ebola, or, rather, as the emergence of a new kind of advocacy similar to what produced the walks, runs and bike-rides for research that are ubiquitous today, the “ice bucket challenge” is worthy of attention.

I think that public attention to the “ice bucket” challenge is not only good for ALS research (and all the patients and their families who cope with this devastating illness), but is an opportunity to engage a newly-interested sector of the public, including all those members of Congress who have accepted the challenge. Think about those freely written $100 checks and consider that the NIH budget buys only about $100 worth of medical research per American, per year, on all diseases as well as vital basic research.  Add to that other federal agencies’ budgets, the private sectors’ expenditures (industry, academia, philanthropy, patient groups) and we can maybe triple that amount (generously computed, and including development along with research). Is that enough to assure better health and prosperity for our nation? I’d say not even close.  Not when brilliant young people are discouraged to the point of leaving the country if they want to work in science;  not when other nations are poised to take over U.S. leadership in R&D; not when we are looking at ALS heartbreak and huge federal debt associated with the costs of Alzheimer’s, as just two crises we should be focused on intently, with all the resources we can bring to bear.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Can we put a dent in the costly toll of suicide?

Dear Research Advocate: 
 
The loss of American Icon Robin Williams has riveted national attention on suicide, one of the 10 most common causes of death in the United States. Today, we are releasing our updated fact sheet on suicide that you can use when meeting with lawmakers and educating others about the impact research can have. Efforts to prevent suicide rightly draw on research findings. But progress has been painfully slow, stymied by serious gaps – partly due to severely limited funding – in the basic research base that precedes private sector development, and stymied by the equivalent of handcuffs placed on social science research.

The notion promulgated by some in the Congress that social sciences research doesn’t add enough value to merit federal funding is not just unfounded, it’s holding us back. Social sciences research saves lives. Case in point: behavioral research guided the development of a suicide intervention that was pilot tested in schools in Georgia and Connecticut and resulted in a 40% reduction in attempted suicides. It has since been implemented in schools across the country. This is just one example of social sciences research at work.

Research moves faster when patient advocates engage. This is the history of the nation’s commitment to defeating polio, to ramping up HIV/AIDS research, to prioritizing breast cancer research and women’s health research overall. Writing in the New Yorker last month, Seth Mnookin described the impact that “dedicated … well-informed families” can have in pushing progress. In his responsive letter to the editor, Peter L. Saltonstall, CEO of the National Organization for Rare Disorders, focused on the use of social media by patient groups to establish global registries, taking full advantage of abilities we didn’t have just a few years ago, and in so doing, saving lives. But there is another message here. The research community must work more closely with patient advocates in order to drive medical innovation. As one of the researchers in the Mnookin article said, “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’” Continue reading →

A Weekly Advocacy Message from Mary Woolley: Behind the headlines

Dear Research Advocate:

News of the rising death toll from the Ebola outbreak in West Africa has captured attention in the U.S. With the arrival of two American patients for treatment in Atlanta earlier this week, we are reminded of our truly global society and the importance of a nimble research ecosystem. Complex global disease threats exemplify the importance of both the public and private sectors in protecting our health.  Why, then, are we not fully funding the NIH, CDC and FDA to ensure the  robust public health infrastructure needed to respond to population-wide threats, to pursue vaccine development and other prevention strategies, and to develop new treatment options for Ebola and a host of other threats?  Why have we not truly empowered industry and public-private partnerships with a regulatory and tax environment worthy of the 21st century?  Readers of these letters don’t need to be persuaded, but can be the persuaders of those who are resisting. Persistent, ill-informed arguments include: we can’t afford more federal support, when in fact we can’t afford the lack of it; our nation’s tax structure need not be competitive with that of peer nations; or industry can act alone.  Our job is to effectively refute them.

Speaking of Africa, the Africa Summit held here in Washington, D.C., earlier this week provided another sort of attention to that continent, which has a swiftly emerging middle class, the youngest population in the world and which, by 2050, will have a population twice the size of China!  Those who are stuck in the “aid” model for assuring that Africa realizes its potential — including its potential as a market — may not realize that there is a crying need for robust science, technology and STEM education as a component of African development if we expect to see self-sustaining economies.  Read more in a pre-Summit op-ed published in last week’s New York Times. Continue reading →

A Weekly Advocacy Message from Mary Woolley: No recess for advocates!

Dear Research Advocate:

As I write, most members of Congress are on the way home for August recess. As anticipated, no further action has been taken on the appropriations front – or much else, for that matter. In terms of issues we care about: no movement on tax reform, which means no much-needed enhancement of the research and development tax credit; no repeal of the medical device tax; and no final passage of Fiscal Year 2015 appropriations bills.  In upcoming letters I will talk in more detail about Capitol Hill-focused advocacy strategies through the election and beyond.

In the absence of legislative action, some attention – in a bipartisan manner – is being given to research for health. In previous letters, I’ve talked about an effort spearheaded by House Energy and Commerce Chairman Fred Upton (R-MI-06) and Ranking Member Diana Degette (D-CO-01) called the 21st Century Cures Initiative that will remain active over the recess. Public input is being sought as central to this initiative. The truly engaged and whip-smart congressional staff coordinating this initiative have indicated that they would welcome your thoughts at any time. They are particularly interested in the National Institutes of Health, the Food and Drug Administration and public-private partnerships. If you believe the key to faster medical progress is increased funding, tell them. If you feel that bottlenecks in the clinical trials process are the priority concern, tell them. This is not only an opportunity to seed positive change; it is an opportunity to elevate the priority of medical progress going forward. When you think about it, the volume of comments is nearly as important as their content. Issues with an army behind them get attention. To submit comments, e-mail cures@mail.house.gov. Continue reading →

Support NIH

Ask Your Senators to Support the Accelerating Biomedical Research Act

Funding to the National Institutes of Health (NIH) has remained flat in recent years, and uncertainty is growing over the ability of universities and other research institutions to conduct the noncommercial medical research underlying new preventative measures, diagnostic tools, treatments, and cures. In response to significant concerns about the erosion of NIH’s purchasing power, Senator Tom Harkin (D-IA) has introduced legislation, the Advancing Biomedical Research Act, that empowers Congress to provide up to 10% increases in NIH funding for FY 2015 and FY 2016, and up to 5% increases through 2021. These increases are more than justified by the scientific opportunity unleashed when the human genome was sequenced. And that’s just one of the developments that has set the stage for accelerated medical progress. We need to conquer Alzheimer’s Disease, cancer, Parkinson’s Disease, and other deadly and disabling health threats…and we can. Show Congress that you support Senator Harkin’s efforts to fuel medical progress. Urge the senators who represent you to support the Accelerating Biomedical Research Act now!

Take action.

A Weekly Advocacy Message from Mary Woolley: A long letter with timely news

Dear Research Advocate:

Today, Senator Tom Harkin (D-IA) — one of the most effective and dedicated champions of medical and health research ever to serve in public office — introduced major new legislation, the Accelerate Biomedical Research Act.  This visionary legislation would increase the budget caps in order to boost National Institutes of Health (NIH) funding to $46.2 billion by FY 2021, a strategy for restoring NIH purchasing power without cutting into funding for other national priorities. You can view my statement on the legislation here and our thank you letter to the Senator here.  It would be terrific if you would write a letter of support for the legislation and send a message encouraging your Senator to sign on.

There’s more good news to share! The Senate Labor-H bill and accompanying report language were released today.  We are grateful to Appropriations Committee Chairwoman Barbara Mikulski (D-MD) and Labor-H Subcommittee Chairman Harkin for helping to conceive of, and agreeing to include, report language to fund a Blue Ribbon Commission on science literacy and public appreciation of science. We’re pleased to have played a role in making this happen but every science advocate deserves credit when federal leaders take a step like this.

In terms of FY15 funding, you may recall that the Senate Labor-H subcommittee proposed NIH be funded at $30.5 billion, a $605.7 million increase, or about a 2% bump over FY14 levels.  The proposed measure also funds CDC at nearly $6 billion, a 3.3% increase from FY14 and funds AHRQ at $373.3 million, a mere .6% increase from FY14.  With the appropriations momentum stalled, rumors are floating around the Hill that the House will soon consider a Continuing Resolution or CR (extending current spending levels) through the election and potentially into December.  Continue reading →

Statement by Research!America President and CEO Mary Woolley on the Accelerate Biomedical Research Act

Research!America applauds Senator Tom Harkin for taking bold, decisive action to heal fissures in our nation’s research pipeline with legislation that will strengthen the National Institutes of Health (NIH) budget over the next six years. The Accelerate Biomedical Research Act will establish a pathway for sustained growth in the NIH budget. That budget has remained virtually stagnant over the last decade, jeopardizing promising research to combat disease and deflating the aspirations of early career scientists. NIH-funded research fuels the development of lifesaving therapies and treatments, and creates opportunities for public-private partnerships to better understand Alzheimer’s, cancer, heart disease and other major health threats here and abroad.

Senator Harkin and other congressional leaders recognize the potential of innovative research, but it is Senator Harkin who is taking the lead at a time when too many elected officials appear to have taken their eyes off the ball with our global leadership in science and technology at risk. China and other countries are aggressively increasing their research and development investments, luring scientists to their shores and challenging our dominance in medical research and innovation. According to polling commissioned by Research!America, a majority of Americans are skeptical that the U.S. will maintain its pre-eminence in science by the year 2020, and many policy experts agree. We urge Congress to support the Accelerate Biomedical Research Act to improve the health of Americans and ensure our global competitiveness.