Category Archives: Agency for Healthcare Research & Quality

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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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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A Weekly Advocacy Message from Mary Woolley: Who has a stake in science?

Dear Research Advocate:

A continuing resolution to fund the federal government at just under Fiscal Year 2014 levels – it now includes supplemental funding to help combat the escalating Ebola epidemic – is on its way to the President’s desk, and members of Congress will soon be on their way home. Where does that leave us? At the very least, with something to talk about.

Today in Kentucky at the Research!Louisville program, now in its 19th year of celebrating science and scientists and engaging the broader community, I talked about the way the nation’s decision-makers have failed us all by setting our nation’s innovation engine on idle, dismissing the fundamental importance of research and innovation at the expense of our health, our national security, our fiscal stability, our economic strength, and our global leadership. And they are sending a message to talented young people like those at the University of Louisville that science is a risky career choice. Yet a “can do” attitude is very much alive here. A group of graduate students has organized a science policy outreach group, determined to bridge the gap between scientists and policymakers. This is an initiative that should be replicated nationwide!

A few days ago at our National Health Research Forum, Dr. Tom Frieden, director of the Centers for Disease Control and Prevention (CDC), himself a global leader in combating Ebola, emphasized how public health is a “best buy,” one that is ignored at our peril. And Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Disease (NIAID) asserted: “we need a complete transformation of how we look at science.” That sentiment was echoed by other panelists in a no-holds-barred conversation about what is right, and wrong, with the research ecosystem. Here are links to video from, news coverage about, and a transcript of, the Forum. We are taking the Forum messages to the Hill and to the public; please join us! Continue reading →

A Weekly Advocacy Message from Research!America: 5 by June 5

Dear Research Advocate:

Today, June 5, is a milestone in our Ask Your Candidates! (AYC!) voter education initiative. Today is the culmination of 5 by June 5, a nationwide push to encourage voters to ask their candidates about the priority of medical progress and encourage five others to do the same. There is still time for you to join us! Click here to send a message to the candidates running for House and Senate in your district. You can customize the message to include your personal reasons for supporting medical research or you can just click send on the message we’ve provided. In this case, it doesn’t just take a village, it takes a nation. Please help us reach voters in every state and every congressional district. Should accelerating medical progress be a higher national priority? If our future leaders understand that their answer to that question is truly important to Americans, perhaps they will enter office as research champions.

Last week, we shared a fact sheet about John Hudson Dilgen, a child with a debilitating and potentially deadly disease called Epidermolysis Bullosa. Medical research is about John. It is also about Carrie, a woman living with a severe form of Multiple Sclerosis. We hope you will find this fact sheet about Carrie useful in your advocacy. When we sent John’s story to Congress, the response was truly overwhelming. Carrie’s story will no doubt have the same impact.

Two articles, one in the Washington Post on June 1, and one in today’s New York Times, offer profound examples of the power of medical research. The Post article discusses accelerated approval of a new medicine that can extend life for a subset of patients with lung cancer, and the Times article describes DNA testing that led to the rapid diagnosis and successful treatment of a little boy whose life hung in the balance. Both of these stories involve precision or personalized medicine, a hallmark of modern medical progress.  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: Are we on the right path to protecting innovation?

Dear Research Advocate:

The budget and appropriations process typically reveals stark differences in funding priorities among the two parties. And this year is no exception. House Budget Committee Ranking Member Chris Van Hollen (D-MD-08) introduced the Democrats’ 10-year budget plan this week, which stands apart from the Republican proposal introduced by Chairman Paul Ryan (R-WI-01) most notably by ending sequestration. The Ryan budget, which won House approval today, is on its way to the Senate but is considered dead on arrival. Note that there’s still time to urge your Members of Congress to support medical and health research as this year’s appropriations process continues!

Teen “whiz kids” profiled in the latest issue of People magazine personify the future of science and medical innovation. Among them, Jack Andraka, who at age 15, created an affordable diagnostic test for pancreatic cancer that provides results in five minutes. He faced tremendous obstacles securing funding for his breakthrough innovation, a problem we see all too often in medical and health research. Such ingenuity propels our best and brightest to take risks but the funding to support their revolutionary ideas is not within their grasp.

Discussing these innovative projects with candidates and elected officials is key to elevating science and technology in the national conversation. In Research!America’s newly released poll data summary booklet, America Speaks, Volume 14, two-thirds of Americans (66%) say it’s important for candidates running for office to assign a high priority to funding medical research. Now is the time to ask future and returning Members of Congress if they believe that medical progress is a high national priority as part of our new national voter education initiative Ask Your Candidates!, which was formally launched this week. More details about America Speaks and the campaign can be found here. As the number of lawmakers with a background in science diminishes, it’s more important than ever to engage with your representatives. Michael S. Lubell writes in Roll Call that if we don’t elect a new scientist in the upcoming elections, it will mark a six-year decline from five to two Members of Congress who have a PhD in a natural science.

National Public Health Week, which wraps up tomorrow, provides another opportunity to engage policy makers about the benefits of health research. Don’t miss our recent blog post celebrating public health — an often underappreciated facet of our research ecosystem.

A new video highlighting backstage interviews with our 2014 Advocacy Award Winners illustrates the passion and drive of these extraordinary leaders who have contributed greatly to medical progress. We encourage you to nominate individuals and organizations whose leadership efforts have been notably effective in advancing our nation’s commitment to research for the 2015 Advocacy Awards.

As you’re aware, members of Research!America’s management team will guest-author this letter in Mary’s absence. This week’s author is Research!America’s vice president of communications, Suzanne Ffolkes.

Sincerely,

Suzanne Ffolkes

Few Americans Know Where Elected Officials and Candidates Stand on Government Support for Research and Innovation, New Polling Booklet Reveals

Research!America and partners launch national voter education initiative to elevate the priority of medical progress

ALEXANDRIA, Va.April 8, 2014—Two-thirds of Americans (66%) say it’s important for candidates running for office to assign a high priority to funding medical research, according to America Speaks, Volume 14, a compilation of key questions from public opinion polls commissioned by Research!America. Polling shows that Americans place a high value on U.S. leadership in medical innovation, yet only 12% say they are very well informed about the positions of their senators and representative when it comes to their support of medical and scientific research. www.researchamerica.org/poll_summary.

To help close this knowledge gap, Research!America and partner organizations are launching a national voter education initiative, Ask Your Candidates! Is Medical Research Progress a Priority? Through online and grassroots activities, social media strategies and on-the-ground events, congressional candidates will be urged to share their views on government policies and support for medical innovation conducted in both the public and private sectors. www.askyourcandidates.org.

“Candidates must do a better job articulating their vision for medical progress, clarifying what level of priority they assign to research as a way to assure improved health, well-being and economic security of all Americans,” said Mary Woolley, president and CEO of Research!America. “Voters need to know whether their candidates view lifesaving medical research as an imperative or an afterthought.”

During election season, Americans want candidates to talk about medical progress. Nearly three-quarters (74%) say it’s important to know whether their candidates for Congress are supportive of medical and scientific research. Notably, more than half of respondents (53%) do not believe elected officials in Washington are paying enough attention to combating the many deadly diseases that afflict Americans. 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 →

Testimony to the House Appropriations Labor-HHS-Education subcommittee

On March 25, Research!America submitted testimony to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and related agencies concerning FY15 appropriations for the National Institutes of Health, Centers for Disease Control and Prevention and Agency for Healthcare Research and Quality:

The National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Agency for Healthcare Research and Quality (AHRQ) play pivotal roles in combating disabling and deadly health conditions. Moreover, the funding, or lack of it, allocated to these agencies will bear on our nation’s ability to compete in key export markets within the global economy, foster business development that grows and maintains jobs across the country, meet our solemn obligations to wounded warriors and support troops on the ground, combat deadly medical errors, and protect our nation against pandemics and emerging health threats. The stakes truly are that high.

Read the full testimony here.

A Weekly Advocacy Message from Mary Woolley: We’re all in this together

Dear Research Advocate:

Fostering research and innovation has long been a multi-pronged effort — government, industry, academia, patients and patient organizations, foundations, and individual philanthropists — all working to advance research. The current interest shown by private philanthropists in advancing science is an echo of a phenomenon witnessed a century ago — and a sign of the opportunity available in some way to all of us to accelerate medical progress and maintain our nation’s competitive edge. As reported in a recent front page New York Times article, private donors are stepping up in a big way at a time when scientific opportunity has never been greater. But it is worth noting that even as philanthropic spending is surging, and while it has historically been an important, often energizing component of U.S. leadership in science, the most robust philanthropic support imaginable would still not be sufficient — nor is it intended to — replace federal support.

In tracking medical R&D spending across all sectors over time, Research!America’s annual investment reports not only support the NYT finding that philanthropic spending is growing, but place that spending in perspective. For example, in 2011, NIH spending dwarfed medical- and health-related philanthropic research spending by nearly $29 billion. That does not mean philanthropic giving isn’t important; rather, it demonstrates that the magnitude of funding needed to drive medical progress is too large to rely on individual or foundation giving. Public and industry dollars are quite simply indispensable to the research pipeline. We call on every sector, every individual (including you billionaires out there!) to step up and increase support. We urge you to fund basic as well as translational research, to identify new approaches and new partnerships, to show us all how to take risks and demand accountability, and to work with and for the overall research enterprise. And — perhaps most important of all — commit to giving confidence to young scientists that their work is valued and will be sustained.

There’s no question about it: We all play a role in achieving better health and quality of life, very much including those who volunteer to participate in clinical trials. We are proud to spread the word about a new campaign initiated by the Pharmaceutical Research and Manufacturers of America (PhRMA) and the National Minority Quality Forum (NMQF). The “I’m In” campaign aims to increase diversity in clinical trials and give patients the opportunity to connect with trials in their communities. Research!America polling shows that while Americans are interested in clinical trials, levels of participation are low, especially among African-American, Asian and Hispanic populations. Advancing medical progress means participating! Our newly released America Speaks, Volume 14 poll data summary booklet includes relevant information on public attitudes about clinical trials.

One time-sensitive way you can exercise your responsibility for advancing medical progress is by asking your representatives in Washington to join the chorus of legislators who support strong, continued funding for research. Members of the House and Senate have the opportunity to share their priorities with the appropriations committees until April 4. Send a note to your representatives urging them to submit appropriations requests that support robust medical research funding in FY15.

Finally, I encourage you to review our just-released 2013 Annual Report, which thanks all our members and supporters — you! — for working with us to inform and engage policy makers, media and the public.

Sincerely,

Mary Woolley

2014 Advocacy Awards Dinner

trofeoOn March 12, Research!America honored extraordinary leaders in medical and health research advocacy during the 2014 Annual Advocacy Awards at the Andrew W. Mellon Auditorium in Washington, DC.

We extend our congratulations to the honorees: Reps. Frank Wolf (R-VA) and Chaka Fattah (D-PA); actress Glenn Close and her family for their work to end the stigmas and misunderstandings surrounding mental illness; Leroy Hood, MD, PhD, president of the Institute for Systems Biology; Kathy Giusti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director of Tuckson Health Connections; and The Progeria Research Foundation (PRF).

While much has been done to advance research, we have a long way to go.

13130132595_bc0c860475_o“Few out there seem to connect the dots to understand that federal funding is essential to develop the foundation of knowledge which is essential for American enterprise in developing the products and therapies that make our lives longer, healthier, and happier,” said Research!America Chair and former Member of Congress The Hon. John E. Porter in remarks at the Dinner. “There’s nothing more important to our future than investments in science, research, innovation and technology.”

And we agree! Contact your representatives and tell them to make research funding a higher priority.

Distinguished guests included current and former members of Congress and administration officials. Sen. Angus King (I-ME), Rep. David Price (D-NC), Rep. Nita Lowey (D-NY) and Rep. Scott Peters (D-CA), joined the celebration. Research!America board members,  The Hon. Mike Castle, The Hon. Kweisi Mfume and The Hon. Patrick Kennedy also attended the event along with former Congresswoman Mary Bono , former HHS Secretary The Hon. Dr. Louis Sullivan, NIH Director Dr. Francis Collins, NSF Acting Director Dr. Cora Marrett, and PCORI Executive Director Dr. Joe Selby.

Click here to see photos.

Tell Congress to Make Medical Progress a High Priority in the 2015 Appropriations Process

The House and the Senate have begun deliberations on funding levels for NIH, CDC, AHRQ, NSF and FDA for FY15. Pressure to cut federal spending this midterm election year is enormous, and we need advocates to reach out to their representatives. Members in both houses of Congress are accepting input from constituents on which priorities they should fight for. Let your representatives know that combating disabling and deadly diseases is a national imperative, and funding for the agencies committed to this fight should be included on their list of appropriations priorities. Contact them TODAY and share this alert on Facebook, Twitter and with your networks.

Take action!