Dear Research Advocate:
Innovation will be the buzzword on Capitol Hill next week as Senate appropriators meet with experts, including National Institutes of Health (NIH) Director Francis Collins and National Science Foundation (NSF) Director France Cordova, for a hearing on April 29, entitled “Driving Innovation through Federal Investments.” As Research!America noted in its written testimony, there’s actually a two-part question underlying that theme: What is the significance of innovation to Americans? And, implicitly, does the return on our investment justify current or higher levels of spending? When it comes to medical innovation, the short answers are: 1) it bears on longevity, individual well-being, deficit reduction, national security, global leadership, etc.; and 2) the economic return on investment justifies robust federal funding levels for research. Chairwoman Barbara Mikulski and committee members are embracing the power of social media to engage the public. Join the conversation using the hashtag #innovation.
Advocates for research must seize this opportunity to underscore the importance of innovation by joining our Medical Progress NOW initiative. Take a moment to email your representatives and urge them to support a substantial increase for NIH in FY15. And take a few more minutes to call your representatives (here are phone lists for the House and the Senate) and make the case to their health legislative assistants. Here is a fact sheet that can help you frame your arguments. The Federation of American Societies for Experimental Biology (FASEB) has new data to help make the case for stronger federal support for innovation. FASEB recently updated their fact sheets highlighting the importance of NIH funding in the local economy of each state and many congressional districts. If you can go the whole nine yards — to secure $32 billion for NIH in FY15 — call, email, and visit your representatives or their state/district directors. Use social media to spread the word.
One more time-sensitive topic: Ask Your Candidates! Please consider partnering with Research!America and the terrific group of organizations who have already joined this national voter education effort. For more information, visit the Ask Your Candidates! website or shoot an email to Tim Tassa at firstname.lastname@example.org. Since we know how important it is to distinguish this non-partisan educational initiative from a campaign activity, we would be glad to provide a fact sheet about that, as well as materials your grassroots networks can use to get involved. The sooner the better.
The time for medical progress is never later. But there are opportunities to accelerate it now. Let’s make sure they’re taken.
This week’s letter was authored by Mike Coburn, Chief Operating Officer at Research!America.
The price of wasted time is too high
The Fiscal Year 2015 Appropriations process marks a period of crucial decisions on how to fund America’s top priorities, including combating deadly and disabling disease. The funding allocated to the National Institutes of Health (NIH), coupled with private-sector investment, saves young lives; empowers those with disabilities to maintain productive, fulfilling lives; and is an underappreciated force behind local and national economic growth, our national security and America’s status as a global economic and innovation leader. Appropriators can act this year to restore NIH to a growth path consistent with the significance of medical progress to Americans and the level of scientific opportunity.
The NIH budget is lower today than it was in 2012. How have we fallen so far behind? Is it no longer important to conquer diseases that kill children, to do more for wounded warriors or to stop devastating conditions like Alzheimer’s and cancer?
Congress needs to do something NOW to make up for the massive gap between the funding needed to reignite medical progress and the minimal funding allocated to this priority over the last several years. Will funding for NIH receive a real funding boost in FY15 or will medical progress continue to lose ground?
We need Congress to accelerate medical progress, not in five or ten years, but now. Tell Congress to treat medical progress like the American priority it is and give it the boost in funding for 2015 that it needs. 2012 is our past; 2015 is our future. Let’s keep moving. Medical progress NOW.
Dear Research Advocate:
Washington isn’t ignoring research; far from it. Legislation was recently signed into law that allows appropriators to reallocate federal funding from the Republican and Democratic conventions to children’s health research; proposals have been introduced that could ultimately provide supplemental federal funding streams for the National Institutes of Health (NIH), the Centers of Disease Control and Prevention (CDC), and several other health research programs; and some Members of Congress have once again launched an attack on the National Science Foundation, demonizing certain projects as a means of casting doubt on scientific freedom. Unless you’re playing Jeopardy!, answers do not precede questions. Science without freedom is not science. More on that in future letters.
Washington isn’t ignoring research, but the spotlight keeps missing the most pressing question: Will Congress do something now to accelerate medical progress, or will FY15 mark another year of neglect?
The NIH budget is lower today than it was in 2012. How have we fallen so far behind? Is it no longer important to conquer diseases that kill children, to do more for wounded warriors, to stop devastating conditions like Alzheimer’s and cancer? Continue reading →
by Amy Comstock Rick, CEO of Parkinson’s Action Network
Parkinson’s disease is a chronic, progressive neurological disorder and the second most prevalent degenerative neurological disease after Alzheimer’s. So far this year, people all over the country have honored loved ones with Parkinson’s disease by helping the Parkinson’s Action Network (PAN) and the other national Parkinson’s disease organizations spread awareness of the disease and its impact on our nation.
PAN, a nonprofit advocacy organization based in Washington, DC, would like thank the hundreds of grassroots advocates who have already asked their local and state governments to proclaim April as Parkinson’s Awareness Month. A sampling of all local proclamations can be found on the PAN website, and you can view images of our grassroots leaders receiving their proclamations from council members, mayors and governors around the country. PAN is also thrilled that our representatives in the U.S. Senate proclaimed April Parkinson’s Awareness Month.
So why is an awareness month important? Continue reading →
Watch backstage interviews with Research!America’s 2014 Advocacy Award winners talking about the importance of medical and health research to improve health and save lives.
“You don’t have to be a scientist in order to move mountains. People can advocate by running road races, by volunteering, by working towards legislation, it’s all essential, the science and all the rest of it. That’s the only way we are going to get to a point where we have a healthier nation in the future and it is doable,” said Leslie Gordon, MD, PhD, medical director of the Progeria Research Foundation, winner of the 2014 Paul G. Rogers Distinguished Organization Advocacy Award. The other winners — Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti, Glenn Close, Reps. Frank Wolf and Chaka Fattah — also describe why it’s important for policy makers and the public to champion medical innovation.
The deadline for nominations for Research!America’s 2015 Advocacy Awards is May 23, 2014. Click here to submit nominations.
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.
Public health is the backbone of our society. Without the contributions of public health initiatives, what new disease epidemic might we face and how many lives would be lost? Successful public health programs depend on research, an often underappreciated facet of the system. By taking a critical look at the data and bringing the right programs to the right communities at the right time, research can target and increase the effectiveness of public health interventions.
This year, celebrate National Public Health Week by talking to your candidates for Congress. Start a dialogue – tell them why research for medical progress and public health is important to you, and ask them where they stand. You can send an email message to your candidate, send them a tweet (include the #AYCresearch hashtag) or attend a town hall near you and ask in person. On Election Day, feel empowered to vote for the candidate who best reflects your priorities. If we don’t know where medical progress fits among the priorities of the people we elect, we will all pay the price. Visit the Ask Your Candidates! website to learn more.
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 →
Tell the House to Reject the House Majority’s Budget Plan
In response to President Obama’s budget proposal, House Budget Committee Chairman Paul Ryan (R-WI-01) released a budget plan titled, “The Path to Prosperity.” In this 10-year budget, Rep. Ryan proposes drastic cuts to the funding used to support medical progress among other national priorities. If this budget became law, it is a near certainty that our nation would lose its global lead in science and innovation, undermining jobs, sabotaging any progress toward economic stability, and stalling research that is addressing deadly and disabling health threats. Research reduced cancer deaths among children by 2.1% per year from 1975 to 2010 — an overall decline of more than 50%. Is that going to be the end of the story when cancer and other childhood illnesses still take the lives of hundreds of thousands of children each year? When the incidence of Alzheimer’s is exploding, when chronic conditions are proliferating, when Parkinson’s and ALS and MS and thousands of other illnesses are causing untold suffering? The Ryan budget laser focuses on one type of government spending, not even the largest or fastest-growing segment of the budget, and cuts it so deeply that it would place desperately needed medical progress on hold and our nation’s very future at risk. Send a message to your representative in the House and say NO to the Ryan budget.
Take action now!
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 →
By Bill Leinweber, President of the National Disease Research Interchange
The National Disease Research Interchange (NDRI) is a 501 (c)(3) national organization based in Philadelphia. NDRI is a national leader in the procurement and distribution of human organs, cells and tissues to support the advancement of medical and health research. The NIH has provided funding to NDRI since 1987, and the organization serves over 100 corporate partners. Researchers in academic medical centers, nonprofit research organizations, as well as pharmaceutical, biotechnology and medical device companies rely on NDRI for access to quality human biospecimens and data. NDRI distributes more than 20,000 biospecimens annually to over 500 researchers.
NDRI is a proud member of Research!America. We embrace the advocacy strategies and tactics of Research!America aimed at making investment in research a higher national priority. As an organization that exists to provide a research resource for use by investigators, we have a first-hand understanding of the impact of shrinking federal investment in research. The lack of growth in federal support for research is clearly the major challenge we are facing today. A continued lack of growth in research investment now is certain to erode the nation’s world leadership in science, have broad and deep economic impact and be devastating to patient populations.
We count on Research!America to be a leading voice in making the case for growth of public and private investment in research and to advance a policy agenda that is conducive to the private sector making the strongest possible investments in research.
Excerpt of a blog post by Dr. Tom Insel, Director of the National Institute of Mental Health.
The Research!America awards dinner is like a lot of DC galas, complete with members of Congress, celebrities, and speeches to honor those who have contributed to a cause. For Research!America, the cause is biomedical research and this year, as in each of the past 25 years, there were honors bestowed on advocates for cancer and rare diseases. Kathy Giusti, diagnosed with multiple myeloma in 1998, spoke passionately about the lack of research on this blood cancer and her singular fight to create a registry and clinical trials, leading to new treatments that have extended her own life and the lives of many others well beyond all predictions. The parents of Sam Berns, an icon for the rare disease progeria, spoke of their son’s commitment to find a cure for this disorder in which children age rapidly and die early. Sam died last month at age 17, but during his brief life, and partly through his efforts working with the world’s foremost genetics labs, the genetic cause was found and new treatments were developed that will almost certainly extend life for others with this rare mutation (see Sam’s inspirational Ted talk ).
For me, what made this event different from previous years was the recognition of advocates for people with mental illness. The actress Glenn Close was recognized for co-founding BringChange2Mind, a campaign to reduce negative attitudes toward those with mental illness. In her eloquent remarks accepting the award, Glenn introduced her sister, Jessie Close, and her nephew, Calen Pick, who each battle serious mental illness. Jessie has struggled with bipolar disorder and Calen with schizophrenia.
When Glenn invited Jessie and Calen to make a few remarks, the evening really became historic. Together, they described a journey undertaken with Deborah Levy and her colleagues at McLean Hospital and elsewhere over the past 3 years. The research team found that Calen and Jessie shared a rare genomic copy number variant resulting in extra copies of the gene for glycine decarboxylase. This gene encodes the enzyme that degrades glycine, a key modulator of the NMDA receptor, which has been implicated in psychosis. Having extra copies of this gene, it seemed possible that Jessie and Calen would be deficient in glycine, with less activity of the NMDA receptor.
Read the full post here.
Statement by Research!America President and CEO Mary Woolley on John Edward Porter Neuroscience Research Center Building Dedication
Research!America members and partners extend warm congratulations to Research!America Chair The Honorable John Edward Porter for his well-deserved recognition by the National Institutes of Health (NIH) with the dedication of the Porter Neuroscience Research Center. Our nation has benefited from Mr. Porter’s leadership in advancing medical and health research as chair of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education during his tenure in Congress, and as an indomitable force in the research advocacy community. As a U.S. representative, he worked across the aisle to cultivate champions for research, articulating the societal and economic benefits of medical innovation. Porter also spearheaded efforts to double the NIH budget, the largest funding increase in the agency’s history. As Research!America’s chair, he has propelled the organization’s mission forward by igniting a passion for medical research advocacy among scientists, patient advocates, industry partners and the academic community. His deep commitment to convincing policy makers that medical research must be funded at the level of scientific opportunity is unmatched, earning the respect of congressional colleagues and leaders in all sectors. For his dedication to making research for health a much higher national priority, we salute him.
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.
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.