Tag Archives: Ask Your Candidates

A Weekly Advocacy Message from Mary Woolley: Social media for medical and health research

Dear Research Advocate:

If you haven’t already heard, “Throwback Thursday” is a weekly social media activity that celebrates unforgettable moments in our lives. Users of Facebook, Twitter or Instagram draw inspiration from old photos of family and friends or landmark events, and talk about them, accompanied by the hashtag #TBT. Wouldn’t it be great if today’s #TBT includes reflections on the impact of medical and health research on our lives and those of our loved ones — especially today, with the mid-term elections coming right up, with so much at stake for future generations?

Consider how far we’ve come in medicine. This week marks the 100th birthday of Dr. Jonas Salk, who gifted us with a polio vaccine. An article in The Guardian detailing Dr. Salk’s determination to eradicate this debilitating condition gives us plenty to reflect upon. Most people my age lived with the threat of polio and knew people with the disease.  Another “throwback” is the conversion of HIV/AIDS from a death threat to a manageable chronic disease. In the throes of public fears about Ebola, there are echoes of AIDS.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Talking about science at election time

Dear Research Advocate:

Ebola remains in the news. In the midst of the demoralizing finger pointing that seems to have taken the place of unity of mission that ought to characterize our nation, we are occasionally reminded that science is a problem solver. That’s a useful message to convey if we hope to keep the current politicization from worsening. But more of us have to speak out. Don’t stand on the sidelines when you could make a difference at this important time when people are paying much more attention to research than usual.

With the election only a little over a week away, take the time to ask candidates a question or two. Email or tweet in questions to debates and contact campaigns via social media. You might talk about Ebola, keeping your request in the moment.  But consider, too, that your candidates’ views on investing in medical progress may be influenced by yesterday’s news about the federal deficit.  The deficit is $483 billion, or 2.8 percent of GDP — its lowest level since 2007. Reasons cited include lower unemployment, higher tax revenues and stable government spending. Still, the budget gap forecast by the Congressional Budget Office (CBO) is expected to widen again as an aging population leads to more spending on Social Security and health care. It isn’t surprising that rising health care costs are cited as a force behind projected future deficits.  What is surprising is that our nation doesn’t have a plan to harness research as a means of responsibly reducing health spending. You will hear more from us about advocating for a national plan to address this and other solutions only science can provide.  Continue reading →

Medical research key issue for elections

Letter to the editor by Research!America President and CEO Mary Woolley published in the Omaha World Herald.

mary-woolley-webThis is in response to a Midlands Voices essay (Finish the job, fund medical research, Sept. 25). The authors’ articulate case for robust and sustained investments in lifesaving research represents the interests of all Americans who await cures, as well as better treatments and prevention of Alzheimer’s, autism, cancer and diabetes and more.

Many Americans believe that elected officials are not doing enough to combat deadly diseases, as they repeatedly cut funding and fail to enact policies that stimulate rather than stifle research. Two-thirds of our fellow citizens say it’s important for candidates running for office to assign a high priority to funding medical research, according to polling commissioned by Research!America.

With the midterm elections approaching, now is the right time to ask congressional candidates whether they would set a high priority on research conducted at the University of Nebraska Medical Center, Creighton University School of Medicine and research institutions around the country. Ask Your Candidates, a national voter education initiative, gives voters in Nebraska a simple way to engage candidates and learn more about their positions on assuring medical progress.

A Weekly Advocacy Message from Mary Woolley: Time to be honest with ourselves

Dear Research Advocate:

This week’s CDC announcement of the worst-case Ebola scenario is staggering. Saying, “Let’s be honest with ourselves …” President Obama addressed the UN this morning on the escalating threat posed by Ebola, urging world leaders to work together to address this truly global crisis. The Biomedical Advanced Research and Development Authority (BARDA) program, which received additional funding for Ebola drug development as part of the recently passed continuing resolution (CR), is a terrific example of how the public and private sectors can work together to develop drugs for national and global health threats like Ebola. BARDA provides market incentives so that private sector innovators can work on noncommercial emergencies. It’s a cost-effective strategy since it precludes the need for government to build drug development capacity the private sector already has, and it’s a good reminder that medical and health research is not about government funding, academic research, or private sector R&D. It’s about all of these things and all of us, working together to save lives.

Let’s be honest with ourselves about something else: policies that cripple private sector investment in research are stifling science.  One such policy involves the research and development (R&D) tax credit, which – despite historical bipartisan support – expired at the end of 2013 and has not been reinstated. Businesses of all sizes across a wide swath of scientific sectors rely on predictable, annual extensions of this tax credit (not that annual extensions are ideal; Congress would also be wise to finally make this credit permanent). Please consider sending a message to your representatives about the importance of reinstating and enhancing the R&D tax credit. Here are two good resources, one nationwide quantitative analysis from the National Association of Manufacturers and one qualitative account of the effects on businesses in Pennsylvania. Members of Congress must work together and quickly upon their return to Washington after the election to not only reinstate the R&D tax credit, but to enhance its reach and effectiveness. And they must pass an appropriations package that recommits to scientific innovation. Note I use the word “must,” not “should.”  When one assumes the role of leader, displaying leadership should not be an option.

And let’s be honest that we are under-investing in our federal research agencies. Determined to alter this state of affairs, Rep. Brian Higgins (D-NY-26), along with Rep. Rosa DeLauro (D-CT-03), recently introduced the Accelerating Biomedical Research Act in the House. The congressman is using some of his district work period/campaigning season to tour institutions that receive NIH funding in his district. If only more incumbents and challengers followed his example!  Rather than despairing that there aren’t more like Mr. Higgins, now is the time to work toward the day that there will be! Candidates who hear voters like you speak passionately now about the importance of advancing medical progress are more likely to become champions for research when they enter Congress next January. Personal stories about why research matters in your life and in your community make for some of the most persuasive advocacy tools.

Let’s be honest that along with personal stories, data truly is important (my advice: tell your story first, after that, add data). Consider the new easy-to-use district-level federal research funding fact sheets from the Federation of American Societies for Experimental Biology (FASEB). These local, by-the-numbers summaries provide information about the number of grants received in nearly 400 congressional districts from the NIH, NSF, DOE Office of Science, and Agriculture and Food Research Initiative in the Department of Agriculture and are useful additions when making your case for research.  We urge you to share this data as well as your commitment to voter education with five of your friends and family!  Join us in the “5 this Fall” campaign on social media.

Final note of honesty about social media … it works! Think “Ice Bucket Challenge” and think about the new ACT for NIH campaign, which is using “selfies” as a way to remind voters and policymakers that research is for everyone, leading to better lives for ourselves, our friends and our loved ones. Reaching an ever-expanding audience via social media is critical. I hope you’ll join Act for NIH by sharing a selfie on social media with the hashtag #ACT4NIH.

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Happenings in and out of Washington

Dear Research Advocate:

I am writing a day early this week since all of us at Research!America will be engaged in our programs tomorrow. If you haven’t registered for the National Health Research Forum, there is still time to join us! More details here.

Congress is back in town. The House will soon consider a simple, short-term continuing resolution (CR) to fund the government through early December. (Nobody wants a repeat of last year’s government shutdown at the beginning of the new fiscal year, October 1.) To offset funding requested by the Administration to help meet the Ebola crisis, as well as to adjust for certain other “anomalies,” the CR bill includes a 0.0556% across-the-board spending cut. There may be modest negotiations, but this or a very similar CR is likely to easily pass both Houses shortly. After the election, it will be important to vocally support the efforts of Appropriations Committee Chairs Mikulski (D-Md.) and Rogers (R-Ky.-05) as they seek to complete the FY15 appropriations process with omnibus legislation before the 113th Congress adjourns in December. More on this in future letters. Continue reading →

How To Help Accelerate Medical Progress In America

Excerpt of an article published in the Imperial Valley News.

AYCEach year in the United States, nearly 16,000 kids are diagnosed with cancer. And on any given day, as many as 5 million Americans are living with Alzheimer’s disease. Beyond its debilitating symptoms, the death rate for Alzheimer’s is on the rise.

But there are steps you can take to protect your family from these potentially devastating medical conditions.

One idea that may come as a surprise to many Americans is to contact your congressional representatives and the candidates for their seats.

That’s the suggestion of a national, nonpartisan, voter education initiative called “Ask Your Candidates!” designed to empower voters to talk to candidates about the future of medical progress in the United States. Congress plays a key role in influencing the future of lifesaving research. Many voters are asking candidates if, once elected, they will vote to increase federal funding for medical research and support policies that spur innovation.

The initiative helps voters engage candidates on social media and through local events, grassroots, advertising and other interactive projects.

Read the full article here.

Ask Your Candidates! Unveils Ad Campaign

One of the fundamental goals of the Ask Your Candidates! (AYC!) initiative is to ensure that medical progress takes its rightful place among the priorities candidates discuss as they vie for a seat in Congress. To further this and the central, voter education agenda of AYC!, we’ve launched an ad campaign on POLITICO.com.

These ads, which will run through July 27th, have three different frames, each of which poses a question on the topic of medical progress: 1) What will candidates for Congress do to help kids who need cures? 2) What will candidates for Congress do to help the 30 million Americans with a rare disease? 3) What will candidates for Congress do to help families grow old together?

These questions are examples and far from exhaustive. Why do you care about medical progress? Click here to let your candidates know and see if they care, too.

Check out the ads at http://www.politico.com/p/pages/2014-elections and other POLITICO web pages.

AYC politico

A Weekly Advocacy Message from Research!America: The innovation imperative: It’s about Max

Dear Research Advocate:

This week, the research advocacy community suffered a tremendous loss. John Rehm, husband of Diane Rehm, passed away Monday. Diane, the host of The Diane Rehm Show on NPR, was honored by Research!America last year for her advocacy with the Isadore Rosenfeld Award for Impact on Public Opinion. Her late husband was a friend and longtime supporter of the Parkinson’s disease community. Our thoughts are with the Rehm family during this difficult time.

As you pursue your advocacy efforts, we hope the newest fact sheet in our series about the human impact of research will prove useful. Max Hasenauer was diagnosed at 22-months-old with X-linked Agammaglobulinemia (XLA). He is alive today because of research that enables him to receive infusions of antibodies every three weeks. While this technique has been life-saving, more research is desperately needed to address the profound challenges Max continues to face. Thank you for helping to ensure that Congressional Offices are seeing these fact sheets. We continue to receive positive feedback from the Hill thanks to your efforts to share the fact sheets broadly. Continue reading →

Sharing a Photo/Selfie to Support Medical Progress

Selfies are a common form of expression on social media. They can be funny, serious, awkward or emotional. They can also be an impactful way of participating in a cause, which is a big reason we are launching a selfies/photo submission project for the Ask Your Candidates! national voter education initiative. As part of this effort, participants are encouraged to take a photo with a sign (download here), indicating why they support medical progress, or they can create their own sign, framing the issue in a way that speaks to their own experiences or organization’s mission.

The goal is to generate buzz for the initiative and increase the volume of the conversation surrounding medical progress, hoping to inspire more Congressional candidates to email statements to Ask Your Candidates on what they will do to accelerate medical progress, if they are elected. These statements will then be archived on the Ask Your Candidates! website.

To participate, just follow these three easy steps:

  1. Personalize an AYC sign about why you support medical progress or create your own sign using a blank piece of paper, so that you can talk about medical progress in your own way. For example, “I support medical progress in honor of…” or “Medical progress is important because…”
  2. Have someone photograph you with your sign, or take a “selfie.”
  3. Promote your photo on social media, using the hashtag #AYCresearch.

Below are two examples of text you can use to complement your social media post, but please feel free to tailor them for your needs

  • I’ve shared why I support medical progress. Ask your candidates for Congress if they care? bit.ly/1sVNA7Z #AYCresearch

Or

  • Here’s why I support medical progress. Show me why you support medical progress, too: bit.ly/1mS0pwR #AYCresearch

We can’t wait to see your photo or “selfie.” Remember, use the hashtag #AYCresearch so that we know that you participated, or email us your photo and we’ll be happy to share it for you.

If you need inspiration, check out some of our staff photos on Facebook. A few of them are below.

Caitlin LeachAnna_BrisenoAdam Katz

National Men’s Health Week – June 9-15, 2014: It’s time to do more about prostate cancer

Leading up to Father’s Day and as part of National Men’s Health Week, the American Cancer Society is raising awareness about risk factors for cancer in men. Among the cancer threats men face, prostate cancer is particularly lethal. In fact, it is the 2nd most deadly cancer for American men behind lung cancer. This year alone in the United States, an estimated 233,000 men will be diagnosed with prostate cancer and 29,480 men will die from the disease. Prostate cancer is also one of the most costly forms of cancer, with $11.9 billion spent on treatment each year in the US.

AYCFathersDayDespite these grim statistics, significant progress has been made in the area of prostate cancer research. Geneticists have identified mutations in the “HOXB13” gene as a cause of early-onset prostate cancer and certain protein markers have been found to be correlated with how much the cancer will spread. Advances in detection methods are making early diagnosis easier and more accurate. It is hoped that a new laboratory test currently in clinical trials will lead to fewer false positives and false negatives. 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 →

5 by June 5 – Turning up the Volume on Medical Progress

When it comes to midterm primaries, June is a blockbuster month: 17 states are holding primaries through June 24. Today, primaries are set for Alabama, California, Iowa, Montana, New Jersey, New Mexico and South Dakota, and next Tuesday, June 10, primaries will be held in Maine, Nevada, North Dakota, South Carolina and Virginia.

From now through the general elections, it is a great time to get involved in the Ask Your Candidates! voter education initiative. One way to participate is by joining us in our 5 by June 5 (5X5) awareness effort, in which we are guiding voters to ask their candidates about medical progress and recruit five people to do the same by June 5.

As you may know, Congress plays a key role in determining funding for noncommercial medical research and formulating policies that incentivize – or de-incentivize – private sector medical innovation. Who we elect affects whether new treatments and cures are discovered or lie dormant. That’s why voter education is so important. Continue reading →

Informative Conversations Highlight Ask Your Candidates! Event in Atlanta

Election season is all about voters getting to know the candidates running for public office in their state.  Through town hall and other meetings, articles and editorials, advertisements and debates, voters obtain information about each candidate that can inform their decision-making at the polls. Ask Your Candidates! (AYC!), a voter education initiative launched by Research!America and terrific partners representing just about every segment of the medical and health research ecosystem, helps connect voters and candidates on the issue of America’s faltering commitment to medical progress. And AYC! did just that last Friday during its first event, a non-partisan meet-and-greet in Atlanta where candidates for U.S. Senate from Georgia discussed the role Congress plays in fueling U.S. medical innovation. The event, called “American Medical Progress: A Conversation with Candidates,” focused on the roles of the private sector and government in the research pipeline that discovers and develops lifesaving medical innovations. All of the candidates were invited, and remarks were delivered by three candidates – Art Gardner (R), Derrick Grayson (R) and Steen Miles (D) – and campaign representatives for Phil Gingrey (R), Jack Kingston (R), Michelle Nunn (D) and Branko Radulovacki (D). David Perdue (R) provided a statement that was read at the event. Click here for a transcript of the candidates’ remarks.

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: First things first

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 →