Tag Archives: medical progress

A Worthy New Year’s Resolution for the New Congress

Excerpt of an op-ed by Research!America President and CEO Mary Woolley published in the Huffington Post

mary-woolley-webAs the new Congress sets priorities, there are strong indications that the political climate is ripe for a surge in science. Bipartisan support for the 21st Century Cures Initiative, a comprehensive study of roadblocks to medical innovation and development of new disease therapies and treatments, is slated to move forward with draft legislation early next year. The measure is expected to address six areas of reform: integrating patients’ perspectives into the regulatory process, modernizing clinical trials, fostering the future of science, investing in advancing research, incentivizing the development of new drugs and devices for unmet medical needs and supporting digital medicine. Research stakeholders ranging from academia to industry to patient groups are working closely with the architects of this initiative, Chairman Fred Upton (R-Mich.) and Rep. Diana DeGette (D-Colo.), to ensure the measure will remove barriers to getting new treatments and cures to patients more quickly.

There is also bipartisan support to reform tax legislation, a light or heavy lift depending on the tax package. All signs point to a repeal of the medical device tax in the new Congress but the jury is still out on whether the R&D tax credit can be made permanent and ultimately whether Congress is ready to tackle tax and entitlement reform overall. A favorable tax climate and strong investments in research are critical to improving our population’s health, boosting the economy and spurring further private sector innovation. With sustained federal funding at risk in a deficit reduction environment, alternative funding models to augment appropriations should be considered including but not limited to a mandatory trust fund dedicated to steady growth in research.

Read the full op-ed here

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: 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 →

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

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

Are we doing enough to accelerate medical progress?

Excerpt of an op-ed by Research!America Chair The Hon. John E. Porter and Research!America Board member The Hon. Kweisi Mfume published in The Hill.

John Edward Porter

The Hon. John E. Porter

Kweisi_Mfume_sflb

The Hon. Kweisi Mfume

The value of innovation has captured the attention of policymakers as they debate the merits of federally funded medical and health research. There is clearly bi-partisan support for research but battle lines have been deeply drawn over funding for research agencies in this tight fiscal climate.

The National Institutes of Health – the world’s leading funder of game-changing basic medical research –  and other agencies contributing to the research pipeline are still affected by sequestration, the ongoing automatic spending cuts that have gutted promising research and shuttered labs. Congressional support for legislation to fund children’s health research demonstrates interest in accelerating medical progress, but the amount is miniscule compared to what’s needed to fuel our engine of discovery. The NIH has lost about 25 percent of its purchasing power in the last decade, jeopardizing the development of lifesaving therapies unleashed by genomics and other scientific breakthroughs. As a result, young scientists unable to secure grants for innovative research are leaving their careers, and institutions are struggling to continue important NIH-funded studies that could help combat national and global health threats.

To address the recent spread of polio in the Middle East and Africa, and the growing epidemic of noncommunicable diseases, we need more training and research to effectively put scientific discovery into practice. Sufficient resources will enable the NIH to train more scientists to better address global health issues which also affect us closer to home – heart disease, cancer, mental illness, diabetes and HIV/AIDS. Outbreaks of polio have impacted a nearly three-decade effort to eradicate the disease globally. The World Health Organization has declared the disease an international public health emergency as it re-emerges in Pakistan, Cameroon, Syria and other countries previously free of polio which can kill or cripple the hardest-hit victims.

Why isn’t Congress paying closer attention to the health threats before us?  To accelerate innovation, protect health and save lives, policymakers must close the massive gap between the level of funding necessary to advance medical progress and the token funding levels allocated to research over the last several years.

Read the full op-ed here.

Statement by Research!America COO Mike Coburn on Senate Labor-HHS-Education Appropriations Subcommittee Markup of FY15 Bill

The increase for the National Institutes of Health is a step in the right direction to accelerate medical progress but we cannot sustain our nation’s engine of discovery with dollops of fuel; a more robust investment is critical to maintaining our pre-eminence in science and saving lives. Researchers are closer to understanding ways to effectively treat and prevent Alzheimer’s disease, cancer, diabetes and other health threats that exact a tremendous financial and emotional toll on patients and their families. Yet federal funding has failed to keep pace with the level of scientific opportunity, and Americans are aware of the disconnect. More than half of those surveyed say elected officials in Washington are not paying enough attention to combating the many deadly diseases that afflict Americans, according to a poll commissioned by Research!America, and most agree that basic scientific research should be supported by the federal government. We applaud the leadership of Subcommittee Chair Tom Harkin in directing additional funds to the NIH. We hope that Congress will boost funding levels to at least $32 billion in FY15 and restore medical research and innovation as a source of hope, prosperity and national pride for all Americans.

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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 →

A Weekly Advocacy Message from Research!America: Flat won’t get the job done

Dear Research Advocate:

Today, Chairwoman Barbara Mikulski (D-MD) released the Senate’s 302(b) allocations, which were approved by the Appropriations Committee. As you know from last week, the House 302(b) allocation for the Labor-HHS subcommittee is approximately $1 billion less in fiscal year 2015 than it was in FY 14.The Senate’s allocation for FY 15 is roughly the same as it was in FY 14. The bottom line is that, as expected, we have our work cut out for us to achieve the increases needed for the National Institutes of Health (NIH) and our nation’s other health research agencies. Fortunately, Senator Mikulski and other leaders from both sides of the aisle understand the importance of investing in research to drive U.S. innovation.  That doesn’t reduce advocates’ workload, but it makes success more than a longshot.

Earlier this week, both the House and the Senate Appropriations subcommittees on Agriculture considered bills that would fund the Food and Drug Administration (FDA) in FY 15. The House version calls for a $23 million increase (less than 1%) while the Senate version provides a $36 million increase. While appropriators deserve credit for finding additional dollars for the FDA given overall FY 15 budget constraints, this agency’s responsibility for protecting the very safety of Americans requires more dollars than this.  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 →

Medical Progress NOW Day of Action is tomorrow!

medprRemember that all day tomorrow, Tuesday May 6, is a social media Day of Action in conjunction with the Medical Progress NOW campaign. Join us on Twitter (#medprogressnow) and Facebook as advocates from around the nation ask Congress to focus on what can be done this year to accelerate medical progress, first and foremost by committing to a meaningful increase in funding for the National Institutes of Health in the FY15 appropriations process.  Share personal stories, relevant data and compelling visuals to make the case that insufficient funding costs lives.  Congress has the power to get NIH funding back on track. Help convince them to do it.

And please spread the word and share the link to the Day of Action toolkit with your professional and social networks for more information and sample messages.

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 →

Fighting for American Priorities

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!

A Weekly Advocacy Message from Mary Woolley: Breakthrough year?

Dear Research Advocate:

During his State of the Union address Tuesday, President Obama acknowledged the important role federally funded research plays in maintaining our global competitive edge and referenced the harm done to basic science by sequestration. Using the example of vaccines, he highlighted the importance of applied research, not only for our health but for the strength of our economy. See my statement about the address here. For the president to succeed in achieving a “breakthrough year for America” — a theme in his address that he is repeating in appearances across the nation — we urge him to put science and innovation at the forefront. I emphasized this in a letter we sent to him today.

During the State of the Union Congressional Debrief sponsored by The Atlantic and National Journal, I asked Rep. Diana DeGette (D-CO-01) whether Congress would work with the president to undo the damage done to basic research. She said that she and others are working in a bipartisan way to assure that “America is the top nation for research in the world.” In an effort to combat the underfunding and underappreciation for federally funded science, our award-winning voter education initiative is launching shortly —  “Ask Your Candidates! Is Medical Progress a Priority?” It is critical that we all ask congressional candidates their views about assuring medical progress. I encourage you to participate in this important campaign as we enter the primary and then general election season.

Last week, the attention of the business community and other leaders was trained on Davos, Switzerland. Comments by Harvard economist Larry Summers at the World Economic Forum put U.S. underinvestment in medical progress into context. It’s a message worth repeating. “We are spending 25 [percent] less on research in the life sciences than we were five years ago. That is a deficit with huge human consequences. We have to move on from viewing deficits in terms of financial debt and focus on the deficits we are bequeathing to our children.”

Please join me in extending hearty congratulations to Research!America Chair and former Congressman John Edward Porter, who will receive the National Academy of Sciences’ most prestigious award, the Public Welfare Medal, at a ceremony this spring. This award, rarely given to a non-scientist, recognizes John for decades of advocacy on behalf of medical research and salutes his many accomplishments, including leadership in the Congress for medical and all scientific research, resulting in increased federal support of our nation’s science agencies.  He continues his leadership for science today!

Sincerely,

Mary Woolley