Category Archives: Ask Your Candidates!

A Weekly Advocacy Message from Mary Woolley: “Hang together or hang separately”

With the exception of the December run-off in Louisiana and final tallies in a few very close contests, we know the basic political landscape for the next two years. The change is greater than many analysts predicted, although it is not a surprise that the House and the Senate will both be Republican-controlled for the first time in eight years. What does this mean for U.S medical progress and scientific discovery generally? According to our experts at Research!America’s post-election briefing hosted by the AAAS this morning, we can expect some highs and lows in both the “lame-duck” and the next appropriations cycle, with the first seven months of the new year being the limited window of opportunity before most attention turns to the presidential election. Guest speaker David Hawkings, CQ Roll Call senior editor, provided a synopsis of exit polling and voter turnout, which reflected the public’s discontent with the White House and Congress, a continued emphasis on economic concerns, and even splits between Republicans and Democrats on just about every other issue, a combination of factors that doesn’t bode well for bipartisanship generally, much less regular order or major policy changes. In a panel moderated by Rebecca Adams of CQ HealthBeat, Research!America Chair John Porter, Vice Chair Mike Castle, board member Kweisi Mfume and Bart Gordon, all distinguished former Members of Congress, offered predictions on how — or indeed whether — the new Congress will assign a high priority to research moving forward. Congressman Gordon lamented the fact that post-election op-eds and news articles about the agendas of both parties do not mention R&D; there is clearly much more work ahead of us.  Continue reading →

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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 →

Chilling Reality. What’s next for ALS?

The Ice Bucket Challenge raised more than $100 million for ALS research, but turning money and enthusiasm into therapies and cures for the deadly disease is an entirely different type of challenge.

Research!America President and CEO Mary Woolley was among the guests on BioCenturyTV This Week on October 19 to discuss the ALS Ice Bucket Challenge, our national voter education initiative Ask Your Candidates! and the need for stronger support for medical research.

We need to make sure to tell the people we’re hiring to serve in Congress that it’s really important to fund research for health, and right now is a good time to be doing that,” said Mary Woolley.

Other guests included:

  • Dr. Brett Morrison, a physician and assistant professor of neurology at Johns Hopkins University
  • Richard Garr, CEO of Neuralstem, a company that is conducting trials of a stem cell therapy for ALS
  • Benjamin Corb, director of public affairs at the American Society for Biochemistry and Molecular Biology

MW BioCenturyTV

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: Nobel prizes this year and in the future

Dear Research Advocate:

The 2014 Nobel Laureates will be announced next week. I hope you will consider amplifying the news via social media, op-eds and letters to the editor. The Nobel prize is so iconic that it provides an entrée to the broader public, one that can be used to connect the dots between the process of scientific discovery, the power of ingenuity, and the role of science in human progress. And if a winner has been funded by a U.S. science agency or company, all the better from an advocacy perspective!

In the years ahead, will the United States be home to more Nobel Laureates in the sciences, or will those honors go to scientists in countries that place a greater emphasis on research and innovation? This chart compares the R&D commitment of 19 Organisation for Economic Co-operation and Development (OECD) nations, the metric being R&D as a percentage of GDP. The next time you are speaking with a member of Congress or his/her staff, you may want to mention that, in relative terms, Estonia assigns a higher priority to R&D than does the United States. Bravo to Estonia, but do we as a nation truly expect to remain a global powerhouse as we drain our own power source? Continue reading →

A Weekly Advocacy Message from Mary Woolley: Labor Day Weekend Check List

Dear Research Advocate:

Labor Day might mean a last chance for R&R, but it also means that election day is right around the corner. It only takes a minute to send a quick email or direct a tweet to candidates. Think of them as candidates for the role of R&D champion! And take a moment to share this call to action with your colleagues, friends and family. The power of social media is undeniable.

aycbeachThere are only 10 days until Congress returns to Washington to face a lengthy to-do list, which is unlikely to shrink much before the November elections. Appropriations action for FY15 has stalled out, with new battle lines being drawn over the time span for a Continuing Resolution (CR). Whatever the length, a CR is no more a solution than is kicking the can down the road on tax provisions. The medical device tax remains unchanged despite its intuitively counterproductive effect on the capital needed to develop lifesaving medical technologies, not to mention the jobs and new businesses that go with that development.  In addition, the R&D tax credit has not been renewed, let alone enhanced or made permanent. If we want our GDP to grow, our tax policies should be aligned with that goal. As things stand, if we don’t figure out how to boost our economy, China’s GDP is projected to surpass ours by 2017.  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.

A Weekly Advocacy Message from Mary Woolley: Behind the headlines

Dear Research Advocate:

News of the rising death toll from the Ebola outbreak in West Africa has captured attention in the U.S. With the arrival of two American patients for treatment in Atlanta earlier this week, we are reminded of our truly global society and the importance of a nimble research ecosystem. Complex global disease threats exemplify the importance of both the public and private sectors in protecting our health.  Why, then, are we not fully funding the NIH, CDC and FDA to ensure the  robust public health infrastructure needed to respond to population-wide threats, to pursue vaccine development and other prevention strategies, and to develop new treatment options for Ebola and a host of other threats?  Why have we not truly empowered industry and public-private partnerships with a regulatory and tax environment worthy of the 21st century?  Readers of these letters don’t need to be persuaded, but can be the persuaders of those who are resisting. Persistent, ill-informed arguments include: we can’t afford more federal support, when in fact we can’t afford the lack of it; our nation’s tax structure need not be competitive with that of peer nations; or industry can act alone.  Our job is to effectively refute them.

Speaking of Africa, the Africa Summit held here in Washington, D.C., earlier this week provided another sort of attention to that continent, which has a swiftly emerging middle class, the youngest population in the world and which, by 2050, will have a population twice the size of China!  Those who are stuck in the “aid” model for assuring that Africa realizes its potential — including its potential as a market — may not realize that there is a crying need for robust science, technology and STEM education as a component of African development if we expect to see self-sustaining economies.  Read more in a pre-Summit op-ed published in last week’s New York Times. Continue reading →

A Weekly Advocacy Message from Mary Woolley: No recess for advocates!

Dear Research Advocate:

As I write, most members of Congress are on the way home for August recess. As anticipated, no further action has been taken on the appropriations front – or much else, for that matter. In terms of issues we care about: no movement on tax reform, which means no much-needed enhancement of the research and development tax credit; no repeal of the medical device tax; and no final passage of Fiscal Year 2015 appropriations bills.  In upcoming letters I will talk in more detail about Capitol Hill-focused advocacy strategies through the election and beyond.

In the absence of legislative action, some attention – in a bipartisan manner – is being given to research for health. In previous letters, I’ve talked about an effort spearheaded by House Energy and Commerce Chairman Fred Upton (R-MI-06) and Ranking Member Diana Degette (D-CO-01) called the 21st Century Cures Initiative that will remain active over the recess. Public input is being sought as central to this initiative. The truly engaged and whip-smart congressional staff coordinating this initiative have indicated that they would welcome your thoughts at any time. They are particularly interested in the National Institutes of Health, the Food and Drug Administration and public-private partnerships. If you believe the key to faster medical progress is increased funding, tell them. If you feel that bottlenecks in the clinical trials process are the priority concern, tell them. This is not only an opportunity to seed positive change; it is an opportunity to elevate the priority of medical progress going forward. When you think about it, the volume of comments is nearly as important as their content. Issues with an army behind them get attention. To submit comments, e-mail cures@mail.house.gov. Continue reading →

A Weekly Advocacy Message from Mary Woolley: A long letter with timely news

Dear Research Advocate:

Today, Senator Tom Harkin (D-IA) — one of the most effective and dedicated champions of medical and health research ever to serve in public office — introduced major new legislation, the Accelerate Biomedical Research Act.  This visionary legislation would increase the budget caps in order to boost National Institutes of Health (NIH) funding to $46.2 billion by FY 2021, a strategy for restoring NIH purchasing power without cutting into funding for other national priorities. You can view my statement on the legislation here and our thank you letter to the Senator here.  It would be terrific if you would write a letter of support for the legislation and send a message encouraging your Senator to sign on.

There’s more good news to share! The Senate Labor-H bill and accompanying report language were released today.  We are grateful to Appropriations Committee Chairwoman Barbara Mikulski (D-MD) and Labor-H Subcommittee Chairman Harkin for helping to conceive of, and agreeing to include, report language to fund a Blue Ribbon Commission on science literacy and public appreciation of science. We’re pleased to have played a role in making this happen but every science advocate deserves credit when federal leaders take a step like this.

In terms of FY15 funding, you may recall that the Senate Labor-H subcommittee proposed NIH be funded at $30.5 billion, a $605.7 million increase, or about a 2% bump over FY14 levels.  The proposed measure also funds CDC at nearly $6 billion, a 3.3% increase from FY14 and funds AHRQ at $373.3 million, a mere .6% increase from FY14.  With the appropriations momentum stalled, rumors are floating around the Hill that the House will soon consider a Continuing Resolution or CR (extending current spending levels) through the election and potentially into December.  Continue reading →

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 →