Tag Archives: advocacy

Medical Research: It’s about you and me

collage fact sheetResearch!America’s newest fact sheet series highlights the personal stories of medical research and the importance of increasing the NIH budget in FY15. We hope you will share these fact sheets with your representatives or congressional candidates, or take it with you on Hill or in-district visits. No one who reads these stories can doubt the significance of medical progress. A stronger investment in research is needed now more than ever!

Here are their stories:

What new discoveries are we delaying and missing when we slow the pace of medical and health research?

We’ve made progress. But the funding to sustain it is eroding.

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A Weekly Advocacy Message from Mary Woolley: American values at stake

Dear Research Advocate:

My colleagues at Research!America have shared the role as author of our weekly letter during my recent sabbatical. My thanks to them for providing timely and actionable information to our wide network. As I am “re-entering” the Washington space, I have been struck by (1) the significantly worse condition of the roads — potholes everywhere, and now even sinkholes in DC! I’ve been in several global capitals this spring, including in less-developed countries, and DC doesn’t look good in comparison. Via recent domestic travels, I can attest to the poor condition of our roads nationwide, taking a toll on vehicles and our economy, while eroding public confidence in government. Public goods — like infrastructure, education and science — that we have long nurtured through steady investment cannot continue to be resource-starved without dire consequences. No wonder the American public is angry at Washington! (2) I have come back just in time to witness the appropriations process grind to a halt. The clock is ticking down toward August recess, and appropriators have a new excuse for failure to take action, i.e., the migrant children emergency. There will always be national emergencies. By definition they are unpredictable, and some are more complex than others; it nonetheless cannot be acceptable for Congress to grind to a halt when one occurs. Continue reading →

Statement by Research!America Chief Operating Officer Michael Coburn on Public Welfare Medal Recipient John E. Porter

Research!America salutes Board of Directors Chair John Edward Porter, the 2014 recipient of the Public Welfare Medal from the National Academy of Sciences (NAS), the Academy’s most prestigious award to honor the extraordinary use of science for the public good. Porter’s leadership in advocacy for research has strengthened our nation’s global competitiveness in science and technology and advanced medical innovation to new heights.  As chair of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education, Porter demonstrated tremendous foresight, calling on policymakers to support robust investments in research to improve quality of life, combat debilitating and deadly diseases and stimulate private section innovation. With the doubling of the National Institutes of Health budget (FY99 – FY03), Porter helped usher in a new era of improved health and longevity for all Americans. A lifelong public servant, Porter continues to champion biomedical research in the U.S., urging researchers, patients and the public at large to become stronger advocates for science.  As an inspirational force in the scientific community, Porter joins a distinguished group of medal recipients who leave a strong legacy for future generations.

 

April is Parkinson’s Awareness Month

by Amy Comstock Rick, CEO of Parkinson’s Action Network

Amy Comstock Rick Headshot (2)April is now about halfway over but there is still plenty of time to help raise awareness for Parkinson’s disease and the millions affected.

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 →

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 →

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.

 

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 →

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

Urge Your Representative to Support NIH

by Signing the McKinley-Davis-Carson-King Letter for Medical Research    

Given that the budget allocated to the National Institutes of Health (NIH), which funds the non-commercial, basic medical research required to develop new medical treatments and cures, is actually lower this year than it was in 2012, it has never been more important to fight for NIH funding. To help ensure that this unique federal agency receives the resources needed to support research at universities, hospitals and other research institutions across the country, Representatives Peter King (R-NY), Susan Davis (D-CA), Andre Carson (D-IN), and David McKinley (R-WV) are circulating a sign-on letter in support of critically needed funding for NIH.

Take action now! Contact your representative and urge them to sign on to this bipartisan letter.

Take Action!

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.

Meeting with Legislative Staff Members

Excerpt of a guest post by Research!America Manager of Policy and Advocacy Caitlin Leach, published in the Fight Colorectal Cancer blog to help prepare their advocates for their Hill day, Call-on Congress, on March 18.

CLAs you prepare for your trip to Call-on Congress in Washington, make room in your luggage for your stories, your experiences and your hope for the future. Your perspectives bring legislative issues to life. Anecdotes about colorectal cancer’s impact on you and your community are essential for your representatives in Washington and their staff members to hear.

Members of Congress make decisions by weighing the facts and evidence, but also based on the insights their constituents share about how policy impacts their lives. Adding your voice to the conversation is critical to successful advocacy.

Meeting with Legislative Staff

While you are in Washington this week, many members of the House and Senate will be in recess — meaning the Members are back home working in their districts. Advocating on the Hill during a congressional recess is just as important as advocating during a busy in-session week.

While you might not get to meet your representative and have a photo-op shaking hands, you will get to meet with the brain trust – congressional staff members. This will be during a time when they have less-hectic schedules and more time to devote their attention to the issues.

Members of Congress are supported by a team of outstanding staffers who advise them on a variety of policy areas covering everything imaginable. You are likely to meet with a staffer; often a legislative assistant (LA), who handles health or related issues. These individuals are part of a legislative staff who work tirelessly behind the scenes to propose ideas for new policies, brief the representative on issues and take dozens of meetings each week with interest groups and constituents.

These are the policy experts.

Read the full blog post here.

A Weekly Advocacy Message from Mary Woolley: Back to regular order, sort of?

Dear Research Advocate:

Following the lead of Budget Chairs Murray (D-WA) and Ryan (R-WI-01), Appropriations Chairs Mikulski (D-MD) and Rogers (R-KY-05) are trying to end the recent string of continuing resolutions and craft a funding compromise that advances the nation’s best interests. Congress may miss its January 15 deadline for appropriations, but it won’t likely shut down the government. We anticipate a short-term extension of the deadline while appropriators in both chambers work to craft an omnibus bill that reflects today’s priorities instead of blind, across-the-board cuts. It’s about time, you’re thinking (and I agree!) that Congress gets back to “regular order.” Regular order includes listening to constituents, content experts and advocates. That’s where you come in. Here is a link to the appropriators and the contact information for their legislative directors (LDs). Emailing their LDs may be the fastest route to reaching the members themselves. Tell them that you endorse their determination to appropriate in keeping with national priorities — and tell them what your priorities are. Continue reading →

A Weekly Advocacy Message from Mary Woolley: No Longer the Envy of the World (Part 2)

Dear Research Advocate:

Yesterday I learned that China is offering to pay full freight for students from developing countries who are interested in receiving their university degree in China. China is also, as you know, investing hand over fist in research and development, life science research in particular. Juxtapose China’s science, STEM education and science-diplomacy policies with U.S.policies: we don’t seem to have them!  And contrast their funding strategy with ours: we’re disinvesting while they’re planning to outspend us within the next five years.

So why does it matter where science is pursued? Why does it matter if the U.S. focuses on other priorities for awhile or forever, given the way we’re going? You can fill in the answer as easily as I can. We need jobs; innovation produces them. We need to cut the deficit; tackling chronic disease is imperative to that goal, as is a healthy industrial base — and without innovation, neither is possible. And so on and so on.

The question is how to wake up policy makers to the havoc they are wreaking on our nation. As regards to the big picture, there is a glimmer of hope in that a group of Republican lawmakers have sent a letter to the Budget Conference Committee asserting the need for a return to an actual appropriations process so that government funding will once again reflect American priorities. Consequence-blind, across-the-board cuts (aka sequestration) are not the only threat to research, but they are the biggest. Appropriating, rather than bickering, is a good first step toward prioritizing R&D funding. A second letter, initiated by Research!America ‘s 2013 Whitehead awardees Senators Bob Casey and Richard Burr, and signed by 33 Members representing both sides of the aisle, urges the Conference Committee to assign NIH funding the priority it deserves.

Our goal is that 100 Senators would sign such a letter and that it would cover much more than NIH funding! Realizing such a goal for all members of Congress is what motivates us in our election year voter education work. We will soon launch our 2014 national voter education initiative with inside- and outside-the-Beltway strategies designed to ensure that both voters and candidates know that Americans’ way of life depends on research and development, which in turn depends upon a governing process that works. The people who report to Americans should do right by them, putting research and innovation to work to find the solutions to the nation’s ills; dismantling our innovation infrastructure and discouraging the talented women and men who make use of it is taking us in the wrong direction as a nation.

Thanksgiving is approaching, and one of the many reasons to give thanks is that I am blessed to partner with visionaries with the drive, dedication and talent to reverse the decline in U.S. science. Research champion Paul Rogers said, “Without research, there is no hope.” You are literally keeping hope alive, and for that I am so grateful.

Grateful and asking for your partnership once again. Please add your voice to the growing chorus promoting Public Health Thank You Day (Monday, November 25th) and heeding its message. The York (PA) City Bureau of Health director, Barbara Kovacs, was outspoken in her letter to the editor of the York Daily Record honoring the unwavering efforts of public health professionals to protect our nation every day. The Beaufort County (NC) Health director, James A. Madson, weighed in with his letter to the editor as well. The Vanderburgh County (IN) Health Department will be hosting a Health Fair to provide free screenings for all residents. Please follow their lead and host an event — large or small, it will matter — or write an LTE, press release or social media post. Our online toolkit will help you craft your Public Health Thank You Day messages. And speaking of critical public health work: If you weren’t able to join last week’s event surrounding Chagas disease research and development, check out PAHO’s full video coverage of it here. Chagas isn’t some remote threat to our nation; it’s one of many emerging challenges that we rely on our public health infrastructure, as well as our talented scientific community, to confront and defeat.  We can’t take the public’s health for granted for another day.

We’re taking a few days off next week to spend with family. I’ll be in touch again the first Thursday of December. A Happy Thanksgiving to you and yours,

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Winning Hearts and Minds and Votes

Dear Research Advocate:

It has been a week since the Budget Conference Committee’s first meeting. The next public meeting is scheduled for November 13. Staffs are at work, and various Members are talking. There are no concrete signs of progress. What I keep coming back to is the failure of our nation’s decision makers to recognize and act on the reality that the priorities of Americans are reflected in both discretionary and entitlement programs. The persistence of sequestration underscores Congress’ inability to make decisions and choose priorities. The sequestration era has run its course, dealing Congress record lows in terms of public support; it’s past time to end the era and move on.

Recently I shared my letter to the Budget Conference Committee; it argued for an end to sequestration, pointing out the importance of investing in medical research as a pragmatic strategy for decreasing the national debt and deficit. This week I followed up with a letter on the importance of health research, pointing out how it helps identify smart medical innovation and optimal health care financing and delivery. The letter showcases the essential role of health economics, health services, public health, behavioral and social science research in assuring quality medical innovation and smart health care delivery. We are concerned that if the research stakeholder community at large does not speak out for this critical research, it will be compromised or even defunded altogether. Please join us in raising your voice. 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 →