Monthly Archives: December, 2012

A Weekly Advocacy Message from Mary Woolley: Bungee-Jumping into the New Year

Dear Research Advocate,

Since I wrote with a note of optimism last week, Speaker Boehner was unable to hold his caucus, and both houses of Congress summarily recessed. As of today they remain at a virtual standoff, with the House calling for passage of a bill to extend all tax cuts and the Senate calling for passage of a bill to let rates expire on families making more than $250,000 per year. The current 112th Congress and the White House are unlikely to come to terms on a deal this year. And now the rhetoric has changed to describing a fiscal cliff effect that isn’t irreparable (thus “bungee jumping,” per a Bank of America economist), with the Administration using damage-delay maneuvers until the new Congress springs into action in the first weeks of 2013. Or maybe things will drag on for months, again? Clearly, “deadlines” have lost their meaning; politics trumps all. Perhaps the markets will force action as they did over TARP. For all of us, stakeholders in research — patients and caregivers, researchers, universities, and industry — the message is that elected officials continue to ignore our interests.

On a positive note, increased media attention to the impact of the fiscal cliff has provided opportunities for researchers to describe the very real consequences of deep spending cuts. In response to an interview request from CBS News, we asked Dr. Kerri Mowen of the Scripps Research Institute to describe how medical research would be affected by the fiscal cliff for a segment that aired on the CBS Evening News on Christmas Eve. Stories like this are crucial for maintaining the drumbeat on the consequences of budget cuts from both a health and economic standpoint. Fewer grants mean fewer discoveries and massive job losses at research facilities and industries nationwide. “Cliff diving” will rupture the drug discovery pipeline and hinder medical progress, an outcome most Americans fear and dread, according to our polls.

We must start the new year with a renewed focus on personalizing the reasons research should be prioritized. The health and well-being of Americans is at stake. Make one of your New Year’s resolutions a pledge to do more to engage lawmakers and the general public. We can help; call on us early and often!

Sincerely,

Mary Woolley

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A Weekly Advocacy Message from Mary Woolley: Down to the wire

Dear Research Advocate,

Progress toward a deal to avert the fiscal cliff seems now to have been reversed, with talk today of reintroducing aspects of the Ryan budget — more severe than sequestration. Holidays or not, this is no time to let up on our individual and collective advocacy for research. Reps. Fudge (D-OH) and Stivers (R-OH) are leading a bipartisan sign-on letter, urging Congress to take into account the critical importance of NIH in any deficit reduction plan. Take action and urge your representatives to sign on! For those of you in Ohio, if you would like to thank Reps. Fudge and Stivers for their efforts, you may obtain their contact information here.

In addition to ensuring sufficient federal funding for research, the government must provide a tax and regulatory environment that is pro-research and pro-innovation. Last week, Research!America sent letters to congressional leaders and the president sharing information about significant contraction in the medical device industry that appears to be associated with the looming medical device tax. If our nation’s leaders truly believe that innovation is the path to lasting economic prosperity for our nation, then they must evaluate both funding and policy, including tax policy changes, in that context. Excerpts of the letters were quoted in CQ Healthbeat and POLITICO Pro articles.

Sen. Daniel Inouye (D-HI) died this week; reportedly, his last word was “aloha.” Sen. Inouye’s incomparable leadership and half-century of service to our nation will be sorely missed. As chairman of the Appropriations Committee, he played a vital role in boosting funding for research. He was an ardent advocate of nursing and nursing research, as well as research focused on helping those in military service and our returning veterans.

We look forward to working with Sen. Barbara Mikulski (D-MD), who will succeed Sen. Inouye as chairman of appropriations. Sen. Mikulski received the Whitehead Award from Research!America last March. She was honored for her long-standing leadership and support for medical research, public health and prevention, regulatory science, and the physical sciences, as well as her support for research as a force for economic competitiveness. She is a champion of women’s health issues and has authored comprehensive legislation to accelerate research on Alzheimer’s disease.

As our nation continues to mourn the tragic shooting in Newtown, CT, I am reminded that research has a role to play in keeping Americans safe through better understanding of how to assure public safety concerning guns, keeping in mind both government and individual responsibilities, and in better understanding mental health challenges. Our public policies should be evidence-based, and when we don’t have the evidence, we need the research to establish it. Research!America extends our deepest sympathies to the families affected by this incident.

It is indeed a time of reflection as to what should be the role of the government in assisting us as individuals — and as a society — in accomplishing our goals and living our values. Our nation and our elected representatives have a challenging time ahead, as does every advocate for research and every patient and caregiver. Let’s not let the year end without stepping up to the challenge, engaging our policy makers and putting research front and center.

All of us at Research!America wish you and yours a joyous holiday season.

Sincerely,

Mary Woolley

Polio Workers Killed in Pakistan

The U.N. has suspended vaccine work in Pakistan following the tragic killings of eight health workers during a three-day polio immunization campaign. Other health workers have been injured or threatened during efforts to deliver vaccines to children around the country.

Polio is a highly infectious disease and can cause irreversible paralysis, but there is a vaccine that can prevent the disease. Coordinated efforts from organizations like the World Health Organization, Rotary International and the Gates Foundation have helped reduce the threat of polio through vaccine distribution and stronger surveillance systems. Thanks to these highly successful immunization campaigns, the total number of polio cases per year has fallen by 99% since 1988. Although polio is nearly eradicated, it remains endemic in three countries, including Pakistan. Immunization in these areas is essential not only to protect the health of local individuals, but to prevent re-infection in nearby countries that are currently polio-free.

To read the full story, visit U.N. Halts Vaccine Work in Pakistan After 2 More Killings.

Morgan McCloskey, global health intern

Lives in the Balance

On December 13 and 14, the global health community gathered at the Mount Sinai School of Medicine in New York for a conference called “Lives in the Balance: Delivering Medical Innovations for Neglected Patients and Populations.” Hosted by Mount Sinai Global Health, Doctors Without Borders (MSF), and Drugs for Neglected Diseases initiative (DNDi), the conference aimed to spur innovation for new tools to combat neglected diseases.

Several key themes emerged from the conference. First, there is a ‘fatal imbalance’ between the burden of neglected disease and medical innovations to combat these illnesses. Neglected diseases affect more than 1.4 billion people worldwide and account for nearly 11% of the global disease burden. In contrast, MSF’s Jean-Herve Bradol, MD, pointed out that of 850 new therapeutic products approved in the past decade, only 4.4% were for neglected diseases. Furthermore, only 1.4% of 148,445 clinical trials were for neglected diseases. To solve this problem, many presenters agreed that there must be a new global framework for global health R&D. A new framework would place an emphasis on public financing and some called for all countries to pledge 0.01% GDP to government-funded R&D.

In addition to reforming the global R&D system, several panelists mentioned the importance of improving access. This means not only improving access to medicines among neglected patients but improving information sharing and access to essential compounds among researchers. The idea of access must also be built into the beginning of the research process. For example, considering storage temperatures or dosage early on in the R&D process will help to ensure that the new tools being developed can be easily utilized in the field.

The conference has put a spotlight on the need for more research to combat neglected diseases. Diseases that once only existed in the developing world are becoming an increasingly large threat in Europe and in the U.S. Cases of multi-drug resistant TB are on the rise, and we need much better treatment options to cure patients. Only two drugs are currently available to treat Chagas disease; both were developed more than 35 years ago, have toxic side effects and are not effective in all patients. It is more important than ever before that governments, philanthropic groups and the private sector come together to help reform the global R&D system, improve access and find new tools to help neglected patients and populations around the world. Many have called this time, these partnerships and current innovations in modern science an unprecedented opportunity for neglected disease R&D. Others are frustrated by the seeming regression in global health due to non transformative “stopgap” efforts, citing drug resistant TB as an example. Both may be right. With unified advocacy to raise awareness and engage political and civic will for NTDs, we can successfully channel both the frustration and the opportunity ahead of us.

A Weekly Advocacy Message from Mary Woolley: Merry Cliftmas?

Dear Research Advocate,

Are we heading over the fiscal cliff? You have probably seen the several public opinion polls saying most Americans now think it’s inevitable. (“Merry Cliftmas,” says Jon Stewart.) Our latest polling tracks with that of others — and adds a timely insight. Just when one might least expect Americans to voluntarily increase what they owe to Uncle Sam, more than 50% say they would be willing to pay $1 more per week if they were sure the dollars would go to medical research. See this finding and more in a new poll we commissioned to take the pulse of Americans at this high-stakes time in our history.

We have been asking about willingness to pay more in taxes for years now, but it is particularly relevant now while elected officials are talking about tax reform and so many people are rethinking the role of government. We hope that advocates will use our poll data, emphasizing that Americans believe research is a part of the solution to containing health care costs and a significant driver to our economy.

You’ve heard about the impact of the fiscal cliff (and possible solutions to it) on NIH and other agencies that support research, but what about the impact on private sector innovation? Our VP for policy and programs, Ellie Dehoney, points out that cuts to Medicare and Medicaid reimbursement rates could create a disincentive for venture capitalists to invest in new medicines. Read the full article in Genetic Engineering & Biotechnology News. New investment in biotech is already down significantly from last year, a trend that does not bode well for patients waiting for innovative treatments.

According to a new brief from the Center for American Progress: “Our national investments in research and development as a percentage of discretionary public spending have fallen from a 17% high at the height of the space race in 1962 to about 9% today, reflecting a shift in priorities of our government.” That’s disturbing, the authors assert, since research and innovation are powerful economic drivers. Public sector funding is slipping in a key area just when we need it most. For more on how innovation powers the economy, see a new report from the Information Technology and Innovation Foundation: The 2012 State New Economy Index. Wherever your state ranks, its future economic success depends on robust investment now in the knowledge economy.

United Health Foundation and its partners have released the 23rd annual America’s Health Rankings — a wonderful resource that tracks key state health indicators across the nation, providing fuel for targeted public health strategies. Investing in research that will open more doors to prevention of obesity is just one of the answers to the call to action issued by the report and its accompanying release.

To help our federal leaders understand how very much is at stake right now, we must all get involved in illustrating the impact slashing research funding will have on individuals, families, careers and business. The AAAS has launched an initiative enabling you to submit a comment and/or a video about current threats to R&D funding, information that will then be used for advocacy. Please take a moment to add your voice!

Sincerely,

Mary Woolley

Majority of Americans Doubt Congress and White House Can Resolve Budget Problems and Avoid Fiscal Cliff

Poll Reveals Deep Concerns Among Americans about Impact of Spending Cuts to Medical Research

Alexandria, Va.—December 13, 2012—Nearly 60% of Americans are skeptical that Congress and the White House will reach an agreement that will avoid the fiscal cliff, according to a new national public opinion poll commissioned by Research!America.  More than 80% of Republicans, nearly 40% of Democrats and 65% of Independents say they are “not too confident” or “not at all confident” current negotiations will result in a deal.  The findings reveal growing doubt among many Americans that Congress and the Administration will be able to make a deal that would avoid tax increases for most Americans and major funding cuts for federal agencies, including those that are responsible for funding medical research.

“Congress and the Administration must make bold decisions to address our nation’s deficit, but cutting funding for research should not be one of them,” said Research!America President and CEO Mary Woolley. “We cannot afford to drain the research pipeline as other countries challenge our world leadership in science and innovation.”

An overwhelming majority of Americans (83%) say that medical research is important to reducing health care costs. And an even larger percentage (87%)  believe that it is important that our nation support research that focuses on improving how our health care system is functioning.

Even in a challenging fiscal environment, Americans continue to place a high priority on biomedical and health research. Upon learning that the percentage of government spending allocated for biomedical and health research is roughly 1.5%, almost half of Americans (48%) believed that it was not enough. In fact, 54% would be willing to pay $1 per week more in taxes if they were certain that all of the money would be spent for additional medical research. This comes as no surprise, as more than half (55%) of Americans do not believe that the U.S. is making enough progress in medical research.

“Our polling underscores support for a stronger investment in research — there’s no doubt that people want a cure, sooner rather than later, for Alzheimer’s, diabetes, cancer and so many other diseases and disabilities,” added Woolley. “In a time when difficult decisions have to be made, Americans overwhelmingly believe research and innovation should be prioritized.”

Other poll highlights include:

  • More than three-quarters of Americans (78%) say that it is important that the U.S. work to improve health globally through research and innovation.
  • Nearly 70% of Americans believe that the federal government should increase support for programs and policies that would increase the number of young Americans who pursue careers in science, technology, engineering and mathematics.
  • 66% of Americans, say they would be willing to share personal health information to advance medical research assuming that appropriate privacy protections were used.
  • 68% of Americans say it’s important that the federal research and development tax credit is made permanent.

The National Public Opinion Poll was conducted online in December 2012 by JZ Analytics for Research!America. The poll had a sample size of 1,000, with a theoretical sampling error of +/- 3.2%. To view the poll, visit: http://www.researchamerica.org/uploads/December2012pollslides.pdf

About the National Public Opinion Poll

Research!America began commissioning polls in 1992 in an effort to understand public support for medical, health and scientific research. The results of Research!America’s polls have proven invaluable to our alliance of member organizations and, in turn, to the fulfillment of our mission to make research to improve health a higher national priority. In response to growing usage and demand, Research!America has expanded its portfolio, which includes state, national and issue-specific polling. Poll data is available by request or at www.researchamerica.org.

About Research!America

Research!America  is the nation’s largest nonprofit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by member organizations representing 125 million Americans. Visit www.researchamerica.org.

 

A Weekly Advocacy Message from Mary Woolley: Time to ramp up media attention to what’s at stake

Dear Research Advocate,

As our nation edges toward the fiscal cliff, the White House and House Republican leadership have been trading offers. The most recent Republican plan includes additional cuts to discretionary spending — another $300 billion. These newly proposed discretionary cuts are significantly less than the across-the-board approach of sequestration, but suggest that — absent a strong shift in the winds — more discretionary spending cuts will be part of any final, compromise plan. It is highly unlikely that any final plan will be hammered out until next year; the president indicated as much in remarks he made Tuesday. The best guess is that policy makers will coalesce around a small package that is designed to hold back the tidal wave of fiscal problems until the new Congress is in place, at which point sequestration will again become a possibility. Regardless of what scenario plays out — and no scenario is anywhere near certain — we must keep up the pressure.

The recent increase in media requests for stories of families, patients and researchers who will be directly impacted by the fiscal cliff is a positive development and an opportunity to increase awareness. Can you help identify individuals who can tell compelling stories now, before decisions are made, and proactively pitch stories to national and local media? You can do this on your own via social media and also work with the communications office of your society, association or institution. And if you or your organization have examples tracing federally funded research to private sector development, write an op-ed or letter to the editor and shine a spotlight on them! I’ll say it again — this is the time to speak out.

Here are a couple of great examples of recent media attention: The St. Louis Post-Dispatch has published an op-ed by Dr. Larry Shapiro, Research!America Board member and dean of the Washington University School of Medicine in St. Louis. He writes about the need for a bipartisan solution to deficit-reduction, one that does not hurt our health and economy. In The Tennessean, Dr. Jeff Balser of the School of Medicine at Vanderbilt writes about the chilling effect sequestration would have on biomedical progress, while discouraging a generation from pursuing careers in research. Columbia University Medical Center convened a press conference with congressional Reps. Nadler, Rangel and Maloney to urge policy makers to reject cuts to the NIH budget. Consider organizing a local press event — as is frequently said, all politics is local, and the best arguments for saving research are local, too.

Ellie Dehoney, our VP for Policy & Programs, was recently quoted in a CNN article, “10 ways falling off the fiscal cliff could hurt your health,” describing the impact of sequestration on vital medical research programs. Forbes has run an op-ed highlighting how the fiscal cliff would harm our innovation economy. The research community’s message is resonating, and all of us need to make sure all policy makers are hearing it, over and over again. Send your elected representatives an email TODAY.

We can have influence even when it may seem unlikely, simply by speaking up and relentlessly making our case. Click here to access a toolkit of advocacy ideas. Several organizations are utilizing YouTube to make the case — see examples here: American Society of Hematology, American Chemical Society. And Stand With Science is a student advocacy organization looking for signatures for their letter opposing sequestration. On December 10, Research!America will participate in the NDD (non-defense discretionary) Coalition’s day of action. You can, too — find more info on how to participate here — if you tweet on the day of action, be sure to use the hashtag #NoMoreCuts!

Sincerely,

Mary Woolley

Report Highlights Need for More R&D Funding for Neglected Diseases

On December 3, Policy Cures released its fifth annual G-FINDER report, a comprehensive survey of funding for research and development for neglected diseases. The report tracks global public, private and philanthropic investments into R&D for 31 diseases, including HIV/AIDS, tuberculosis, malaria and NTDs.  In positive news, this year’s report shows that total funding has actually increased by $443 million since 2007.

The report demonstrates that government funding, which accounts for over two-thirds of all investment, is increasingly going toward basic academic research, rather than product development. Research!America believes it is vital that the entire research pipeline be fully funded. Basic research will help us understand the best ways to tackle these neglected diseases and give us a better understanding of disease and the human body.  However, we also need robust funding for the development of urgently needed tools like drugs, vaccines and diagnostics. This urgency is worsened by the fact that private and philanthropic investments in product development for NTDs have also decreased.

Because NTDs disproportionately affect the “bottom billion” or individuals earning less than $1.25 per day, there is essentially no market demand for new NTD tools, so the private sector is unlikely to fund these projects. Dr. Moran, director of Policy Cures, believes that governments must step up to the plate, saying that “if [governments] want products for neglected diseases, they must fund product development as well as basic research.”

-Morgan McCloskey, global health intern