Tag Archives: medical research

A Weekly Advocacy Message from Mary Woolley: Let me tell you a story…

Dear Research Advocate:

Appropriately, it was Jack Valenti, prominent former president of the Motion Pictures Association of America, who recommended to politicians that every speech should include the six words: “let me tell you a story.” Stories have impact in ways reports do not. Eddie Redmayne as Stephen Hawking, a theoretical physicist diagnosed with a form of the motor-neuron disease amyotrophic lateral sclerosis (ALS), in The Theory of Everything, and Julianne Moore as Dr. Alice Howland, a fictional linguistics professor diagnosed with early onset Alzheimer’s, in Still Alice, were Academy Award winners last Sunday evening. These films grappled with devastating diagnoses for the patient and their loved ones, putting a face to the 30,000 Americans living with ALS and the more than 5 million Americans living with Alzheimer’s.

A less high profile but impressively high impact group of advocates for rare disease research traveled to D.C. from around the nation to tell their own – personal and nonfictional – stories about the toll visited on patients and families by a wide range of diseases that also call out for more research. Having spoken with the group early yesterday morning before they fanned out on Capitol Hill, I can attest to how well-rehearsed and determined they were to make their case. I recalled that it is patients and their families who have, historically, so often made the breakthrough difference in advocacy for research, going back to the key role of the March of Dimes in focusing the nation on the imperative of putting research to work to defeat polio, through the paradigm shifters called AIDS activists and women’s health research advocates, and many more. Now is the time for more stories to be told on Capitol Hill, at this moment of opportunity for galvanizing Congress’ increasing interest into action. Continue reading →

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Americans Say Congress Should Take Swift Action to Assure Patients Benefit from Treatments and Cures for Diseases

New Poll Data Summary booklet reveals concerns among Americans about the pace of medical progress

AS15Majorities across the political spectrum say it is important that the new 114th Congress takes action on assuring the discovery, development and delivery of treatments and cures for diseases in the first 100 days of the legislative session (75% Democrats, 64% Republicans and 60% Independents), according to America Speaks, Volume 15, a compilation of public opinion polls commissioned by Research!America. As Congress considers numerous proposals in support of research, including the 21st Century Cures draft legislation aimed at speeding the delivery of lifesaving treatments to patients, it is notable to see public support in favor of accelerating medical progress.

“The new Congress has the opportunity to reinvigorate our research ecosystem and enact policies that will enable the private sector to expand innovation,” said Research!America Chair John Edward Porter. “Congress must work in a bipartisan fashion to realize the potential of promising studies to prevent and treat disease.”

An increasing percentage of Americans say the U.S. Food and Drug Administration (FDA) should move more quickly in order to get new treatments to patients, even if it means there may be risks. In 2015, 38% favor faster regulatory review, compared to 30% in 2013. Meanwhile, 25% say the FDA should act more slowly in order to reduce risk, even if it means patients may wait longer for treatments.  Another 19% are undecided on this question and 18% do not agree with either position.   Continue reading →

A Weekly Advocacy Message from Mary Woolley: Many ways and many means

Today, the House Ways and Means Committee considered legislation (HR 880) to make the R&D tax credit permanent. A simplified, permanent R&D tax credit would amplify the credit’s proven positive impact on the pace of innovation and the strength of our economy. Read our statement submitted for the record here. We know from recent polling that Americans value the R&D tax credit, even if the federal government loses some revenue annually. This and more poll data will be highlighted in our 2015 Poll Data Summary next week, so keep an eye out for this timely read!

Tax reform is one component of the policy climate in which R&D flourishes…or doesn’t. Dr. Mark McClellan, Research!America Board member and Director of the Health Care Innovation and Value Initiative at Brookings, has co-authored two relevant articles in the February issue of Health Affairs: one that looks at ways to bolster the inadequate pipeline of high priority antibiotics as resistant strains of infectious illness proliferate; and a second article that discusses approaches to assessing the “innovativeness” of medical advances. The significance of the former is self-evident. The significance of the latter is multi-faceted, but one important reason to gauge “innovativeness” is to help answer the value question central to reimbursement decisions and other policies. There is no easy way to assign the “right” value to products that could have broad-scale, tangible and intangible, short- and long-term impact on our health, wellbeing and productivity, the economy, federal, state and local budgets, national security, and more. This is an important undertaking, since if we don’t understand exactly where medical progress falls among our national and individual priorities, we are bound to under- or over-incentivize it. And that’s costly on many, many levels. Both of the studies Mark contributed to are well worth the read. Continue reading →

Statement by Research!America President and CEO Mary Woolley on President Obama’s Precision Medicine Initiative

President Obama’s Precision Medicine Initiative could potentially drive medical and health research into exciting, new territory as we advance efforts to develop the right treatments at the right time for individual patients. A laser-focus approach that takes into account a patient’s genetic profile, environment and lifestyle is critical to treat diseases such as cancer which afflicts millions of Americans. Only about a quarter of Americans believe the U.S. has the best health care system in the world, according to public opinion polling commissioned by Research!America. This initiative could help reverse both the perception and the reality with targeted treatments that will save lives and improve health care delivery.

This initiative is an important development for patients, physicians and researchers who will benefit from a stronger national commitment to precision medicine and for those who may yet take advantage of the new tools and therapies that will result from this effort. And many Americans are ready to support this endeavor. Polls show more than half say they are willing to share their personal health information to advance research and help improve patient care, and a majority believe that elected officials should listen to advice from scientists. This initiative is a major step towards building a stronger public-private partnership to leverage health data and technology to accelerate the discovery and development of tailored treatments for patients.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Science and the State of the Union

Dear Research Advocate:

The State of the Union (SOTU) message is the annual opportunity for the President to outline his goals. Read my statement on it here. The SOTU historically provides a platform for the executive and legislative branches to identify commonalities, or sharpen differences. Topics in our sights on which Congress and the Administration can work together should they choose (meaning if their constituents demand it!) include innovation, research and development, and 21st century business success. In his speech and in a more detailed proposal, the President calls for a significant increase in funding for antibiotic discovery, Alzheimer’s research, the BRAIN Initiative and precision medicine. We urge the President and Congress to go further, working together to advance a strategic “moonshot” that re-energizes our national commitment to science, very much including basic science. Basic discovery is truly the foundation for all of our nation’s scientific advances. It’s pretty simple. As Dr. Roger Perlmutter, Executive Vice President at Merck, said this week in The New York Times: “Since we don’t know how the machine [the human body] works, we don’t know what to do when it breaks.”

Investment in basic and clinical research isn’t a “nice to have” proposition; it’s essential, leading as nothing else will, to good news for patients. An op-ed this week from Executive Vice Chancellor for Medical Affairs at the Washington University School of Medicine in St. Louis and Research!America board member Dr. Larry Shapiro discusses the university’s work, funded by the federal government, which has led to advances in early diagnosis of Alzheimer’s before symptoms are perceptible. Continue reading →

A Wish List for the 114th Congress to Consider

By Caleph B. Wilson, Ph.D., a biomedical researcher at the University of Pennsylvania, logistics director of the National Science Policy Group, science communicator and STEM outreach advocate. Follow him on Twitter as @HeyDrWilson.

CalephWith the 114th Congress underway, the scientific community is looking forward to sharing new research breakthroughs and advocating for STEM during a series of congressional visits to Capitol Hill. In some instances, scientists and trainees will assist writing congressional briefs and give testimony to House and Senate committees on science, technology and health.

While Congress is considering science policy initiatives, positions and funding, there are a few things in the early-career scientist “wish list” that would make improvements and maintain the United States’ leading position in the scientific enterprise.

Throughout 2014, early-career scientists discussed specific issues in science policy groups, on social media and in articles that need to be addressed. These are some of the highlights of the conversations that have been put in a “Wish List” that hopefully Congress and policymakers will strongly consider.

  • National Science Foundation (NSF) and National Institutes of Health (NIH) funding that is predictable and keeps pace with inflation.

In the early 1990s, the NIH budget increased dramatically. However, over the last 10 years the NIH budget has flat-lined and even decreased at times. Unfortunately, the budget has not kept pace with inflation and rising costs of executing experiments. With changes in the economy and the sweeping budget cuts that came in with sequestration, government agencies, institutions and investigators can better plan with predictable budget appropriations that keep pace with scientific opportunity. Continue reading →

Medical Research Saves Lives, Provides Hope and Fuels our Economy.

We NEED CURES, NOT CUTS.

Sequestration arbitrarily stifles federal investment in national priorities like medical research and innovation, at the expense of America and Americans.
Deficit reduction is important, but there are ways to achieve it that do not set out nation back, threatening our global leadership and shortchanging the health and safety of the American people.

Tell Congress: WE NEED CURES, NOT CUTS!

Funding research

Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The Gainesville Sun.

In reference to the Dec. 28 editorial “Funding innovation,” countless medical breakthroughs would not have been possible without the support of federal funding. It is imperative that research and innovation become a higher national priority for the new Congress.

Bipartisan proposals to advance medical progress — like the 21st Century Cures Initiative that includes provisions to boost federal funding for research, modernize clinical trials and incentivize the development of new drugs and devices, among others — should be given serious consideration. Stagnant funding over the last decade and sequestration have taken a toll on research institutions in Florida and across the country. Continue reading →

A Weekly Advocacy Message from Mary Woolley: 2015: Pragmatism over politics

Dear Research Advocate:

As America rings in the New Year, many of us will be reflecting on the past and making resolutions for the future. To get a feel for the numerous ways in which NIH, CDC, AHRQ, NSF and FDA contributed to the well-being of Americans and others throughout the world in 2014, click here. I hope lawmakers are taking time now to establish New Year’s resolutions and set priorities for the new Congress, which convenes one week from today. My biggest wish for the new Congress?  Pragmatism over politics. If pragmatism rules, the next Congress will shake off the stultifying complacency that is weighing our nation down and act to reignite U.S. innovation. More here.

One reason pragmatism is so crucial is that it accommodates complexity. It would be terrific if the benefits of medical research and innovation could be catalogued like books in the library, but as Norm Augustine explains in The Journal of Clinical Investigation, no can do. The quantifiable benefits of research can stretch so far into the future and be so wide-ranging that it is nearly impossible to fully capture them. And not all the benefits are quantifiable. Policymakers are understandably interested in hard data to help predict the return on federal investment, but that doesn’t mean the value of science can’t be meaningfully conveyed to them. Norm’s commentary is an important reminder that as advocates, we should be prepared to defend science against inadequate estimates of its impact. It also speaks to our role in bridging the distance between scientific progress and such human values as compassion, empathy and curiosity. Pragmatic means logical and reasonable, not “monetizable.”  Continue reading →

A Weekly Advocacy Message from Mary Woolley: “Congress: Strong letter follows… “

Dear Research Advocate:

So much is troubling our nation – evidenced in protests of recent grand jury decisions and the controversy over release of the Senate’s report on the CIA – that most people probably haven’t noticed or cared that the Congress is delaying and may even abort action on the long overdue funding of the federal fiscal year that began on Oct. 1.  People have grown tired of Congress missing self-imposed deadlines, only to say they can only act in the face of those deadlines, and now they are talking of doing it again.  And thus we are lulled into thinking it doesn’t matter what the Congress does.  But that would be wrong: priority-setting by the Congress plays a major role in determining the economic security and health status of the nation and everyone in it.

Right now, Congress is keeping the nation in limbo, and not just when it comes to funding deadlines. “How low can we go” does seem to be the theme of the appropriations process. If the currently negotiated plan is adopted and signed into law – and that is a big if – the good news is that one-time supplemental funding will be allocated to NIH, CDC and other agencies to work on advancing Ebola-related research and clinical trials. That aside, NIH and CDC would receive razor thin increases compared to FY14, as noted in our statement about the “Cromnibus.” NSF and FDA fare slightly better with increases reaching the level of full percentage points, 2.4 percent and 1.4 percent, respectively. AHRQ is slated to receive a decrease of .08 percent, but, importantly, the agency will at long last be given budget authority, i.e., will not have to rely on passing the hat, so to speak, to other agencies to help fund it. Now Congress must take AHRQ to a higher level of support if we are ever to get our arms around inefficiencies in health care delivery. Continue reading →

A Weekly Advocacy Message from Mary Woolley: This just in: Congress busy meeting long-expired deadlines

Dear Research Advocate:

Congress is working to reach agreement to fund the government for FY15. Recall that the federal fiscal year 2015 began on Oct. 1, but that deadline was not met. Instead, a continuing resolution (CR) was enacted to keep the government from shutting down. Missed deadlines and CRs have now been the pattern of many years’ standing, despite rhetoric about the importance of a “return to regular order.” Instead of regular order we have “kick the can down the road,” again and again.

It seems increasingly likely that Congress’ current appropriations negotiations will produce a hybrid omnibus and CR (a “CRomnibus” for fans of linguistic portmanteau!) which includes all the spending bills for federal funding except those that relate to immigration. (Those accounts will be funded solely on a short term basis in order to afford the new 114th Congress an opportunity to re-evaluate immigration-related funding early next year.) Neither an extension of the full CR nor a CRomnibus will improve the dismal status quo for science funding. Please urge your Member of Congress to pass full appropriations legislation for FY15, rather than another standing-in-place CR, by clicking here. Continue reading →

Why support Research!America

In honor of #GivingTuesday, Jayme and Julie talk about their experience working at Research!America to help boost federal support for medical research and innovation.

Jayme Hennenfent , D.V.M., M.S.

JaymepicI was honored to embark on a science policy fellowship at Research!America because I know firsthand how crucial funding is to the discovery process. My alma mater, The University of Illinois at Urbana-Champaign, is a preeminent research institution, spending over a half a billion dollars on science and technology research annually. However, even powerhouses like this are not immune to the current struggle for project funding support, which I personally observed when I saw world-class researchers dedicating more and more of their time towards the grant application process, and less to scientific discovery. Towards the end of my study there, I became increasingly interested in how policy and science intersect, and in turn, how important a scientific perspective can be in policy development. Research!America brings a wealth of scientific perspective to their fight for progress in medical science, through dedicated leadership and permanent staff, as well as fellows and interns who get the opportunity to learn about the policy process up close. It feels great to work in this environment where they are so passionate about both the policies and the science they support!

Jayme Hennenfent is a Science Policy Fellow at Research!America. She is a 2014 graduate of the University of Illinois at Urbana-Champaign, holding a doctoral degree in veterinary medicine and a master’s degree in microbiology.

Julie Babyar, R.N., M.P.H

JulieWe all have family, friends and acquaintances that depend on a strong medical research infrastructure to make their future better. In order to ensure a promising future, I strive to understand all aspects of health care in various sectors.

I chose to apply for an internship with Research!America because I believe it to be one of the best organizations for medical research advocacy and policy. Increasing constraints alongside multiple agendas in the field of medical research call for opportunities for a unified voice. Research!America historically and presently represents this voice. It is an organization where the mission statement truly matches both employee and member actions, and thus it is an organization shaped in sincerity. The mentorship and education provided to me has been invaluable. Continue reading →

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

A Weekly Advocacy Message from Mary Woolley: Suddenly, preparedness matters again

Dear Research Advocate:

We thought we learned our lesson after 9/11 and anthrax attacks.  After the trauma and after fear swept the nation, we invested substantially in “preparedness.”  But then we drifted into complacency, and began cutting deeply into the kind of preparedness that is less visible than TSA and drone strikes, but, as Ebola is teaching us now, no less valuable. As mentioned in today’s congressional hearing on the subject, the decade-long pattern of cuts to federal health agencies, as well as to funding for hospital and public health preparedness, has now been revealed to have been short-sighted.  (Much of the cutting was carried out over the years as a way to “prioritize” federal spending in the face of today’s presumably more pressing problems, including reducing the federal deficit and debt. If our policymakers were holding true to the financial priority argument, they wouldn’t have short-changed NIH, NSF, FDA and CDC or acted to discourage private sector research and innovation. Medical research to develop treatments that slow the progression and ultimately prevent Alzheimer’s and obesity is the only means we have of preventing an entirely foreseeable explosion in national health spending!  Mary Lasker got to the heart of the matter when she said: “If you think research is expensive, try disease.”)

We expect our elected officials to be preparing on all fronts. There will be more Ebolas. That is scary, but it is inevitable. Maybe the next Ebola will take the form of a virus akin to HIV/AIDs or a major act of bioterrorism or a drug-resistant airborne infection. We are a globalized world facing global health threats, and the federal agencies responsible for preventing and responding to these threats must be supported, not politicized, demonized, or starved.  Nor should we address one problem by neglecting others, funding Ebola by reducing dollars for research crucial to combating other health threats. Continue reading →