Category Archives: Agency for Healthcare Research & Quality

Tell Congress to Protect Medical and Health Research

To protect medical and health research, policy makers must eliminate sequestration. This remains Research!America’s top-line message, because it is sequestration that poses the greatest threat to all discretionary funding, including medical and health research conducted by NIH, CDC, FDA, NSF, AHRQ, DOD … and the list goes on. Advocates for medical and health research have made a huge impact over the years on funding and policies supportive of medical and health research, including playing a key role in reducing sequestration in 2013. We are asking you to weigh in again to help address sequestration in FY14 and FY15.

On Wednesday, the co-chairs of the committee charged with establishing an overall budget number for FY14 struck a deal that would establish this top-line number for both FY14 and FY15. Under this agreement, the sequestration cuts would be reduced by $50-$60 billion over the two-year period (a reduction of approximately 30% each year). While this modest reduction is less than hoped for, it does signal progress in the fight against sequestration. The task now is to assure this or a better deal passes both the House and Senate by December 13.

Please contact your representatives in Congress and urge them to vote in favor of a significant reduction in sequestration for FY14 and FY15 as a down payment on eliminating sequestration.

Take action now.

Don lab coats

Letter to the editor by Research!America President and CEO Mary Woolley published in the Philadelphia Inquirer.

mary-woolley-webBy visiting a University of Pennsylvania research facility last week, Sen. Bob Casey (D., Pa.) underscored his commitment to making research and innovation an immutable national priority (“Scientists reeling from budget cuts,” Oct. 24). Adequately supported, research will allow us to overcome major health threats and drive the economy.

Americans have taken notice that research support is waning and, in addition, say they are concerned that officials in Washington are not paying enough attention to deadly diseases, polling done for our nonprofit advocacy alliance, Research!America, shows. If elected officials aren’t paying attention, who will lead the charge to assure robust funding for research now and in the future? Too many lives hang in the balance if we take medical progress for granted. Cures and treatments for deadly and disabling diseases can’t wait out nine more years of sequestration.

A Weekly Advocacy Message from Mary Woolley: Brink and Blink, and repeat…

Dear Research Advocate:

After 16 costly, wasteful days, the government has been funded through January 15 at post-sequestration, FY13 levels — hardly adequate for providing the solutions the American public awaits. A bicameral, bipartisan budget committee has been charged to develop a long-term deficit reduction plan by December 13. If these marching orders sound familiar, they should: We’ve been down this road before, only this time sequestration isn’t the threat at the end, it’s embedded in the negotiations. As tempting as it is to give in to brinksmanship fatigue and just tune out the process, advocates must seize the opportunity to make sure our issue remains front and center, that it becomes impossible for lawmakers to ignore. Sequestration must go; research and innovation must be an immutable national priority, supported at the level of scientific opportunity that will allow us to overcome health challenges and continue to drive the economy.

We are pursuing every opportunity to make the case on behalf of our alliance. Yesterday, I was privileged to join an impressive group of speakers, including Leon Panetta, at a “stop the madness and do your job” press conference sponsored by the Campaign to Fix the Debt. Among the strong points emphasized by former Secretary Panetta, who also served as White House chief of staff, congressman and OMB director, was a call for long-term — he suggested five years — thinking and budgeting for non-defense discretionary spending. Continue reading →

A Weekly Advocacy Message from Mary Woolley- Warning: A government shutdown could be dangerous to your health

Dear Research Advocate:

Congress is on the brink of forcing a government shutdown on Tuesday, October 1. The implications of a shutdown are being subsumed by coverage of the political theater taking place. That is an injustice to Americans, who will be affected.  History is illustrative on this point.

During the 1995 and 1996 shutdowns, the NIH turned away new patients at the Clinical Center. Research studies housed at federal institutions ceased for the duration of the shutdown; researchers and leaders of industry, academia as well as in government agencies were unable to plan effectively, wasting time and money; the CDC was forced to stop disease surveillance programs, leaving us unacceptably vulnerable to emerging health threats and even pandemics; NSF could not release grant funds, resulting in a backlog of thousands of proposals, and those were just a few of numerous effects. Compounding the impact this time around is the costly toll that sequestration — on top of a decade of stagnant funding — has already taken in undermining the promise of research and innovation.

A recent New York Times op-ed by Thomas Friedman that was published in other newspapers underscored for me exactly how high the stakes are right now, and a Roll Call op-ed by Morton Kondracke provides additional context.  These two voices are prominent among this week’s sampling from an increasing number of informed individuals who are articulating what all the trends show:  the US is on a path to scientific, and potentially general, decline.  Add to this that the US is already ranked far below where we should and aspire to be in health indicators.  The question is:  why are these twin realities not receiving more attention from our elected officials? Too few Americans are demanding common sense from Washington; please raise your voice louder and longer, and do it now. Then urge everyone in your network to do the same.  Help us deliver this message to your members of Congress — we want #curesnotcuts! Continue reading →

A Weekly Advocacy Message from Mary Woolley: The Congress of Today and the Congress of the Future

Dear Research Advocate:

With only eleven days until the end of the fiscal year, Congress has yet to pass a continuing resolution (CR) to fund the government past September 30. The House is expected to vote on, and pass, a bill that does not include funding to administer Obamacare as part of their “CR;” the Senate and the President will not agree, thus almost certainly forcing a government shutdown.

The issue of what to do about sequestration is almost certainly not going to be resolved as part of negotiating this short-term CR. That means we must continue to fight for action, and there has been a flurry of advocacy on Capitol Hill. This included, but was certainly not limited to the inaugural class of our Postdoctoral Advocacy Academy, who visited their Members’ offices to share stories of how sequestration has impacted their work and careers. And yesterday, Research!America’s Chair, former Congressman John E. Porter, gave the “go get ‘em” charge at the Rally for Medical Research Hill Day. Thanks to the leadership of the American Association of Cancer Research (AACR), the day attracted more than 150 organizations, with more than 225 survivors and other advocates from more than 40 states descending on Washington. Also this week, the AACR released their third annual Cancer Report, demonstrating the tremendous return on the nation’s investment in basic research. Continue reading →

Highlights of the 2013 National Health Research Forum

Research!America’s National Health Research Forum — held September 12 at the Newseum’s Knight Conference Center in Washington, DC — examined the current and future state of research to improve health. This year’s theme was “Straight Talk about the Future of Medical and Health Research.” Three expert panels delved into different aspects of the research ecosystem.

_DSC5052Reseach Amercia NatHealth Research Forum 9.12.13 BarrettResearch!America’s president and CEO, Mary Woolley, and chair, The Honorable John Edward Porter, opened the program. Porter introduced Bart Peterson, JD, senior vice president of corporate affairs and communications at Lilly who delivered a brief keynote speech.

“We developed an innovation ecosystem, and that ecosystem requires sound public policy. From the private sector perspective, that includes solid intellectual property protection; a fair, rigorous, transparent regulatory system; a market system of health care delivery and pricing that offers choice for patients and health care providers,” Peterson said. “But the public sector has a role far beyond just producing sound public policy … Public funding for research, which is so threatened today, is absolutely critical to the future and we care about that as much from the private sector perspective as anybody else does.”

R!A 2013 Forum

The first panel, focusing on biomedical research and development, was moderated by journalist Eleanor Clift of Newsweek and the Daily Beast and featured John Crowley, president and CEO of Amicus Therapeutics and a patient advocate; William Hait, MD, PhD, global head of R&D at Janssen Pharmaceuticals; Margaret Hamburg, MD, commissioner of the Food and Drug Administration (FDA); and Peterson. The discussion centered on innovation within the pharmaceutical industry and the relationship between companies and regulators. Continue reading →

A Weekly Advocacy Message from Mary Woolley: A “dark future for science?”

Dear Research Advocate:

Although Congress officially returns next week, many Members are back in Washington as the debate about the crisis in Syria commands center stage. Members also face looming fiscal deadlines, with only nine legislative days scheduled in September to act on those and a large backlog of other legislation. Given all this, it is not hard to predict how Congress will handle the long- or short-term budget resolutions, debt ceiling, the future of sequestration, tax and entitlement reform, and a myriad of other interconnected items: They will put off decision-making.

Thus a continuing resolution (“CR”), extending FY13 budgets, looks likely, once again kicking the can down the road and, in doing so, kicking patients and researchers alike into the ditch. And things will be worse than the terrible FY13 numbers, given that the Budget Control Act mandates less discretionary spending in FY14 than in FY13 — almost certainly prompting agencies to further decrease their spending while waiting for what might well be a still-lower final appropriations bill (more details here.)

This adds up to “a dark future for science” according to NIH Director Francis Collins. He and other leaders of science believe that the nation is increasingly underprepared to meet existing — not to mention emerging — health threats. Now is the time to hold Congress accountable for avoiding a dark future by making your voice heard. Click here to send a message to your representatives that medical research at NIH, CDC and our other health research agencies must be championed in the upcoming fiscal debates — not cut, not put on hold, but prioritized, championed. After participating online, magnify your voice as a broad coalition joins forces on September 18 to participate in the American Association for Cancer Research’s Hill Day, urging Congress to champion the National Institutes of Health. Continue reading →

Members of Congress Need to Make a Commitment to Medical Research

We Need to Make that Happen

Congress will be making funding decisions for all or part of FY14 in September, and it may also decide whether to eliminate, modify or simply leave in place the annual, arbitrary budget cuts known as sequestration. If we want the federal government to continue to adequately seed the research pipeline so that researchers can find treatments and cures for deadly diseases like cancer and Alzheimer’s, Congress needs to hear from us. Now. Tell your representatives in Congress to speak out and fight for the National Institutes of Health, the Centers for Disease Control and Prevention, and the other health agencies that spur medical progress and safeguard the health and safety of Americans day in and day out.

Take action here.

A Weekly Advocacy Message from Mary Woolley: America can do better

Dear Research Advocate:

The 50th anniversary of the March on Washington and the clarion call for equality for all Americans brings to mind the work still to be done to address health disparities. For example, cancer incidence and death rates are significantly higher for African-Americans than for all other ethnic groups, and Hispanic and African-American adults are 1.5 to 2 times more likely to have diabetes than white adults. Our polling shows that nearly 75% of Americans believe it is imperative to conduct research to understand and combat health disparities. As a community of advocates, we need to press policy makers to keep this unacceptable gap in health care and health outcomes in their sights. America can do better.

As September nears, Congress returns to Washington with a looming fiscal debate. Treasury Secretary Jack Lew reports that the debt ceiling will need to be raised earlier than anticipated, possibly as soon as mid-October. The urgency of this deadline takes away any buffer time on which congressional leadership may have hoped to rely. A funding measure for FY14, sequestration, the debt limit, reforms and a government shutdown may well be contenders in the upcoming debate. It will certainly keep advocates for medical and health research busy — fighting sequestration, pushing for greater research funding, pressing for the exemption of user fees from sequestration (should the across-the-board spending cuts remain in place), and even weighing in on the impact of tax and entitlement reform on medical innovation, although it is unlikely that such a reform effort would happen now. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Is a do-nothing Congress a public health threat?

Dear Research Advocate:

Last week, I wrote about the international trade deficit our country faces. This week, I’d like to focus on the budget deficit. From 2003 to 2011, Medicare and Medicaid spending grew 74% while our economy only grew 35%. With that kind of differential, no government can balance its budget. We need research to address disabling and costly illnesses, but that won’t be enough in and of itself to bridge the gap. We also need tax and entitlement reform that preserves needed services, squeezes out waste and inefficiency (by the way, that’s why we must also fight to protect health economics research, health services research and other research that optimizes health care financing and delivery) and promotes pro-innovation tax changes that are designed to sustain a prosperous nation.

One vocal advocate for a long-term view of the steps our nation must take to secure human and economic progress, including committing to ample and stable public support for medical research, is The Honorable John Porter, Research!America chair and former U.S. representative. He recently penned an op-ed published on CNN.com and elsewhere titled “A do-nothing Congress isn’t healthy.” Mr. Porter makes it clear that we must “view research through the prism of future generations” to properly set a legislative course towards prosperity and good health, and we must not delay. Continue reading →

A do-nothing Congress isn’t healthy

Op-ed by The Honorable John Edward Porter, Research!America Chair and former U.S. Representative (1980 – 2001) published in CNN.

John Edward PorterAt every congressional recess, the question remains: What has Congress accomplished to advance medical innovation, or for that matter any of our national priorities?

A ritual of leaving town with no meaningful action on pressing issues seems to have taken hold as lawmakers once again meet with voters in their districts. Indeed, much will happen during this break, but as elected officials hold yet another town hall meeting, Facebook or Twitter chat or public event, thousands will be diagnosed with cancer or get the dreaded confirmation from a physician that they or a loved one has Alzheimer’s disease. Thousands will suffer a heart attack or stroke, and thousands of parents will learn that their child has a rare disease.

Researchers are racing against the clock to identify a new gene or molecule that could lead to the next medical breakthrough and bring us closer to cures and new therapies to halt disease.

Time is of the essence in the scientific community, but unfortunately, our elected leaders continue to squander precious time in political, ideological battles that yield little or no results. Is this the Congress you elected? This is not the first elected body to tackle formidable challenges, but it may be the first that has failed miserably in addressing critical issues that will have short- and long-term implications for the health and well-being of Americans.

Spending bills to fund the National Institutes of Health, the Centers for Disease Control and other agencies in the next fiscal year remain in limbo as sequestration, across-the-board spending cuts enacted in March, tightens its grip on medical innovation. As a result of these mindless budget cuts, researchers are delaying or scrubbing promising studies. Institutions across the country have closed labs, reduced their work forces and implemented hiring freezes. Young scientists are rethinking their career paths or moving abroad to countries that have accelerated investments in research. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Are we entering “A Dark Age for Science in America”?

Dear Research Advocate:

The Commerce Department’s report of the U.S. trade deficit narrowing to its lowest level since October 2009 is welcome news, but the devil is in the details. Despite the economic progress, our trade deficit with China is nearly as large as our overall trade deficit. Put that together with the fact that China is rigorously investing in R&D while our nation stifles it, and you can see the handwriting on the wall. U.S. export capabilities will be stymied while China’s are bolstered. It’s not a recipe for a strong and stable economy going forward.

China is not the only nation steadily increasing investment in R&D, taking a page from what used to be the U.S. playbook. As I shared with Jonathan Cohn of The New Republic for his article today, “If federal funding continues to decline, our leadership status in the short-term will be tenuous at best.” Research!America’s polling on international competitiveness shows that Americans are acutely aware of our declining leadership status: More than half believe that a country other than the U.S. will be the global leader in science and technology by 2020. A quarter of respondents say that China will be the next world leader.

Sam Stein of The Huffington Post portrays the consequences of short-sighted budgets for science. His story’s dramatic headline — “Sequestration Ushers In A Dark Age For Science In America” — is illustrated with economic points and also stresses what may be lost in terms of scientific discovery. Claire Pomeroy, MD, president of the Albert and Mary Lasker Foundation, reinforces the sentiment in her piece on the importance of research advocacy, also in The Huffington Post yesterday. Please join us in being sure your elected representatives receive the message carried in these articles, and then urge everyone in your networks to do the same! Continue reading →

A Weekly Advocacy Message from Mary Woolley: Finally, a breakthrough in classification of R&D

Dear Research Advocate:

The Bureau of Economic Analysis has reclassified research and development costs from an “expense” to an “investment” when calculating GDP. We think Members of Congress should do the same. Common sense tells us R&D is an investment, not an expense; in general conversation we all talk about R&D as an investment, but it isn’t accounted for that way on the federal books. The arguments we’ve been making are now further bolstered by the BEA’s decision. Spread the word!

One hundred and sixty five university presidents and chancellors, representing all 50 states, have called on the president and Congress to reverse the pending “innovation deficit” in an open letter published last week in Politico before the August recess. With more than half of the economic growth in the U.S. since WWII attributable to innovation — largely due to the nation’s commitment to higher education and federally supported research — our society and our economy are at risk if we continue on today’s trajectory.

These are arguments to use as we work to keep research and innovation in the conversation during the August recess. We have launched a reprise of our social media campaign using the hashtag #curesnotcuts. Please take part, so that policy makers, at home in their districts this month, get the message loud and clear that Americans want medical research to be protected from indiscriminate cuts; so they hear that research and innovation require committed, robust investment. Earlier this week, I was on “Radio Smart Talk” on WITF-FM, a Pennsylvania NPR affiliate. During that show I spoke about the damaging effect of the sequester and fielded questions from listeners. When making your case, you might find it useful to pull from those radio soundbites or from the points we contributed to an editorial that appeared in the The (Newark, NJ) Star-Ledger. Continue reading →

VA Health Care

Last week, a briefing sponsored by the Friends of VA Medical Care and Health Research (FOVA) brought the Department of Veterans Affairs (VA) Research and Development program to Capitol Hill.  Two researchers – John McQuaid, Ph.D., of San Francisco VA Medical Center and Daniel Gottlieb, M.D., M.P.H., of VA Boston Healthcare System – shared their work to advance health outcomes for veterans.   The topics discussed varied, including substance abuse, phantom pain, depression, and sleep apnea, and represented just a small fraction of the research conducted by VA Research and Development. The mission of the VA research team was clear: we as a nation have the responsibility to apply science to veterans’ care in order to achieve the highest level of care for those who served this country.

In order to reach that goal, the many players in the health research ecosystem need to work together.  The speakers described the system as interdependent, highlighting the “cross-pollination” across the various public, private, and academic research systems.  VA Research and Development has successfully partnered with other government agencies – including the Department of Defense, the National Institutes of Health, the Centers for Disease Control and Prevention and the Agency for Research and Healthcare Quality – in order to maximize the reach and scope of their research.  Examples from the San Francisco VA Medical Center model promoted the unique role of non-governmental organizations, such as non-profits, in linking federal and private research partnerships.  Strategic collaboration can leverage collective resources for research during this era of tight budgets and allow for improved health outcomes for our veterans.  To learn more about the important research conducted through the VA Research and Development program, please click here.

Join us (again!) for a Social Media Engagement Campaign for August Congressional Recess

The August congressional recess is here! Members of Congress are back home for the month long break. Now’s the time to speak up and urge policy makers to make research for health a higher national priority before they return to Capitol Hill and make decisions that will affect the health and prosperity of our nation. Join Research!America’s social media congressional recess campaign, Medical Research is at Risk. We Need Cures, Not Cuts! Customize your messages with statistics, patient/researcher stories, examples of innovative research, and descriptions of the impact of sequestration to help make research part of the national conversation on social media and beyond.

Follow us on Twitter @ResearchAmerica and use the hashtag #curesnotcuts. We will also be posting updates on our Facebook page and we encourage you to engage your representatives on social media channels as well.

Sample Twitter messages:

  • .@RepJohnDoe, sequestration=fewer doses of vaccines for the flu, measles, whooping cough & hepatitis. We need #curesnotcuts!
  • If we don’t act soon, #sequestration & additional cuts will endanger private sector innovation. #curesnotcuts  http://bit.ly/19dKiHZ
  • .@AHRQNews is the lead agency funding research that has reduced deadly hospital infections, which kill 100,000 each year. #curesnotcuts
  • Impact of #sequestration & other budget changes to @CDCgov = $40 million reduction in HIV prevention. #curesnotcuts http://1.usa.gov/18vU19O
  • If user fees paid by industry are subject to sequestration, @US_FDA’s budget will lose $85M, slowing access to breakthroughs. #curesnotcuts Continue reading →