Dear Research Advocate:
Myth #1: Congress doesn’t pay attention during the August recess. Not true! Many town hall meetings are planned. Since the debt ceiling and appropriations negotiations are coming up in September, the August recess is actually a very important time for advocacy. Use this month to drive the point home that medical research should not be subjected to budget cuts by attending a town hall meeting, meeting with district staff and participating in our social media campaign, #curesnotcuts. Click here for sample messages, or draw from a recent op-ed penned by The Honorable John Edward Porter, Research!America chair. The op-ed ran in several McClatchy-Tribune newspapers across the country last weekend. In it, he highlights the dangers that indiscriminate budget cuts pose to our medical and health research ecosystem.
Myth #2: It makes no difference when scientists speak out. On the contrary, one of the most effective strategies for promoting and protecting research is public engagement by scientists. It may seem like a waste of time or an unjustifiable obligation, but if scientists don’t speak up about their work, the funding that allows that work may evaporate. In a recent entry on his website, David Eagleman, a PhD researcher who recently received an award from the Society for Neuroscience, makes the case that the benefits (such as inspiring critical thinkers, stemming the flow of bad information, informing public policy and more) clearly outweigh the cost of time to engage in outreach and advocacy. For those ready to engage, some important points and valuable tips on how to communicate clearly and effectively were highlighted in yesterday’s Nature blog. Research!America Board member and AAAS CEO Alan Leshner is among the experts quoted. Continue reading →
By William (Bill) R. Brinkley, Ph.D., TAMEST’s 2012 President
Sometimes you find luck sitting by your side at the most opportune of moments. For example, what would you do if you suddenly found yourself seated next to a key member of the U.S. Congress on a two and a half hour flight to Washington, D.C.? Be prepared, it could happen to you!
If you are a frequent traveler like me, you probably prefer to read, daydream or sleep on most flights. But what would you do if you suddenly recognized that your seat mate was a VIP—say, a key member of the U.S. Senate or House of Representatives? You might recognize it as a terrific opportunity to put in a good word for particular issues of great importance to you or society. Say for instance, an increase in funding for biomedical research or pending legislation for another cause that might impact your future and that of your co-workers and colleagues.
This actually happened to me a few years ago as a biomedical researcher and president of the Federation of American Societies for Experimental Biology (FASEB) advocating for a campaign to double the funding of the National Institutes of Health (NIH). At the time, I was traveling to Washington, D.C. frequently to visit key members of the legislature to encourage support for the “doubling” as it came to be known. One key member of the House of Representatives, Congressman Tom DeLay was thought to be a hopeless holdout—but a key individual to get on our side. As the Majority Whip, DeLay earned the nickname “The Hammer” for his enforcement of party discipline in close votes and his reputation for wreaking political vengeance on opponents. After making numerous unsuccessful attempts to get an audience with DeLay, I finally gave up! Continue reading →
Major Study Finds That Overall Population Health in U.S. Has Improved, But Has Not Kept Pace With Other Wealthy Nations
Americans are living longer lives but are spending more years afflicted with major illnesses such as Alzheimer’s disease, kidney disease, and mental and behavioral disorders, according to a study published online in the Journal of American Medical Association. Researchers show that the overall population health improved in the U.S. in the last few decades, however, illness and chronic disability now account for nearly half of the country’s health burden.
The objective of the study was to measure the burden of diseases, injuries and leading risk factors in the U.S. from 1990 to 2010 and to compare these measurements with the 34 countries in the Organisation for Economic Co-operation and Development (OECD). The researchers found that U.S. life expectancy for both sexes increased from 75.2 years in 1990 to 78.2 years in 2010; during the same period, healthy life expectancy increased from 65.8 years to 68.1 years. During this time period, improvements in population health in the U.S. did not keep pace with other wealthy nations. The authors note that the U.S. spends the most per capita on health care across all countries yet lags behind other high-income countries for life expectancy and many other health outcome measures.
In a recent national public opinion poll, two-thirds of Americans (66%) say that their quality of life has been improved by medical research and that the cost of health care is the most critical health issue in America today. We must continue to urge policy makers about the importance of funding medical research if we want to live healthier – not just longer – lives.
The full study is available online: http://jama.jamanetwork.com/article.aspx?articleid=1710486
Editor’s Note: This study is supported in part by the Intramural Program of the National Institutes of Health, the National Institute of Environmental Health Sciences, and in part by the Bill and Melinda Gates Foundation.
By Sara J. Chang, Government Relations and Public Policy Manager, Lupus Foundation of America.
“We are lupus activists, and we’re here to tell our stories and make our voices heard throughout Capitol Hill!” That was the empowerment felt during the Lupus Foundation of America’s biennial National Lupus Advocacy Summit held June 24-25, 2013. It is always an energizing and rewarding event for our lupus activists and 2013 was no exception. We had meetings with 176 Congressional offices, involving 220 people representing 30 states. Our online activists also came out in force, generating 3,503 emails and phone calls to Congress during the two-day event!
We took to Capitol Hill to urge Congress to support funding the National Institutes of Health (NIH) at $32 billion and to pass H.R. 460, the Patients’ Access to Treatments Act (PATA), to ensure access to treatments for lupus and other chronic conditions. Lupus activists reinforced their request when they presented more than 30,000 petition signatures collected from individuals calling upon Congress to expand the medical research effort on lupus. (You can still sign the online petition at www.cruelmystery.org.) Continue reading →
Statement from Research!America President and CEO Mary Woolley on President Obama’s FY14 Budget Proposal
The president’s FY14 budget proposal offers a lifeline for medical research to replace sequestration’s damaging footprints. The budget includes $31.3 billion for the National Institutes of Health, as well as increases for the Food and Drug Administration and National Science Foundation. These increases would take our nation in the right direction, but we’re concerned that budget proposals from Congress – one from each of the House and Senate – unlike the president, fail to reverse sequestration. Sequestration, 10 years of across-the-board spending cuts, will drag our nation down from its leadership position in research and development as other countries aggressively ramp up investments, attracting American businesses and young scientists concerned that federal funding is on the decline, that the U.S. no longer prioritizes research. Policy makers must start acting in the best interests of this nation and tackle tax and entitlement reform to end sequestration.
Our nation has the most sophisticated medical research ecosystem in the world; yet our elected officials have ignored the short- and long-term consequences of dismantling it via sequestration – more deaths from preventable diseases, increased joblessness and soaring health care costs as more Baby boomers become afflicted with Alzheimer’s, cancer, heart disease and other life-threatening, costly illnesses.
While the president’s budget increases federally-funded medical research, Congress and the administration must look more deeply into the consequences of dramatic cuts to Medicare Parts B and D, which cover crucial medical innovations including prescription drugs, biologics, and medical devices. If Medicare undervalues these preventative, diagnostic, and treatment tools, access and innovation will both suffer. The counterproductive effect of slowed innovation and access barriers could be increased hospital and other health care costs. We’re also disappointed that the president’s budget cuts funding for the Centers of Disease Control and Prevention which is already operating on a severely depleted budget. Cuts to the Agency for Healthcare Research and Quality which identifies waste and duplication in our health care system while combating deadly medical errors are also a strategic mistake. Policymakers must tread carefully in the coming weeks to avoid decision-making that will endanger the health and economic prosperity of our country.
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On March 14, Research!America hosted a neglected tropical disease panel at the Consortium of Universities for Global Health (CUGH) conference, “Are NTDs a Growing Threat? Research, Access and Next Steps.” The conversation was moderated by Karen Goraleski, Executive Director of the American Society of Tropical Medicine and Hygiene (ASTMH) and featured the following panelists: Rachel Cohen, Regional Executive Director of the Drugs for Neglected Diseases initiative (DNDi); Brian D’Cruz, Emergency Physician with Doctors Without Borders/Médecins Sans Frontières North America; LeAnne Fox, Medical Officer and Team Lead on NTDs at the Centers for Disease Control and Prevention (CDC); Kristy Murray, Associate Professor of Pediatrics at the National School of Tropical Medicine, Baylor College of Medicine and Mark Rosenberg, President and CEO of the Task Force for Global Health.
The panelists first discussed the global burden of neglected tropical diseases. Moderator Karen Goraleski started the afternoon by pointing out that “global health is America’s health,” and that sentiment was echoed throughout. NTDs all over the world were mentioned from sleeping sickness in remote villages of Africa to onchocerciasis in Columbia to dengue fever and West Nile in Texas and Florida. These diseases not only impact the health of affected individuals, but ultimately hamper economic development. Specifically, Dr. Fox asked how “an individual with an enormous leg could reach their earning potential?’ or how could a child with a helminth infection learn or focus as well in school?”
Unfortunately, the answer is that individuals affected by these debilitating diseases cannot reach their full potential. In the face of these extreme health and economic burdens, all panelists highlighted the importance of research in global efforts to combat NTDs. It is crucial to develop new drugs, diagnostics and vaccines to combat these diseases. Sufficient tools simply do not exist for many NTDs and many available tools are extremely difficult or impractical for use in low-resource settings. When reflecting on his on-the-ground work in Africa, Dr. Cruz said that he “can clearly see the need for new diagnostics and treatment strategies – there is so much more to be done in screening and care for neglected patients.”
Although these types of research projects have the potential to save millions of lives, funding is often insufficient. Because NTDs disproportionately affect people in poverty, there is limited market demand for new tools and thus, the private sector typically has little incentive for investment. Unfortunately, public sources of funding are also scarce and recent sequestration cuts have jeopardized NTD work at NIH, CDC and DoD. However, Ms. Cohen pointed out that new models of public-private collaboration are extremely promising. She stressed the importance of a mix of public and private funding, particularly in the field of drug development, where publicly funded research is an excellent base, but requires private sector involvement for mass production of drugs. She noted that factors such as motivated CEOs, emerging markets and corporate social responsibility efforts have begun to push the private sector to be more involved in the fight against NTDs.
The final theme that emerged from the panel centered around Dr. Rosenberg’s remark that “compassion is crucial in the fight against NTDs. Even if there is no threat of these diseases to us in the U.S., they affect over one billion people around the world and we should care because it’s about equity and justice.” Research!America’s polling supports that Americans are a generous group and support global health. Ms. Goraleski wrapped up by saying that we must harness this sentiment and intent, starting with everyone in attendance. If we can work together to raise awareness of NTDs and advocate for more funding to advance NTD research, one day we can have the tools necessary to eliminate these diseases.
–Morgan McCloskey, global health intern
Join Research!America and the American Cancer Society Cancer Action Network for a pre-SOTU Twitter chat on Monday, February 11, 1 to 2 p.m. ET. Visit @ResearchAmerica and @ACSCAN on Twitter to follow Research!America President Mary Woolley and ACSCAN President Chris Hansen as they discuss important facts about sequestration and answer questions from participants. Use the hashtag #curesnotcuts in your tweets to join the conversation.
An article in the most recent issue of The Scientist highlighted the importance of affordable diagnostics for global health. Although scientific advances have improved treatment options for many global diseases, a lack of effective, low-cost diagnostics hinders the health of many in the developing world. For example, medicines to treat HIV and tuberculosis have been life-saving for many individuals, but they can cause liver damage and patients on these medications must be monitored. However, the primary test for liver damage requires expensive equipment that is simply not available in low-income countries. To solve this problem, a Massachusetts biotech company, Diagnostics For All, developed a 10 cent paper-based test that can diagnose liver damage with a single drop of blood.
Other U.S.-based companies are working on similar low-cost diagnostics. In Texas, Global BioDiagnostics Corp is developing a more effective test for tuberculosis that will cost just $5. Both of these projects are excellent models for incorporating the idea of access into the research process and designing products that can actually be utilized in low-resource settings. However, there is often not enough money for companies to develop these kinds of products. In fact, a principal investigator at PATH says that “the problem [with low-cost diagnostics] is almost always funding.” Therefore, it is crucial to increase funding for affordable diagnostics. Not only would increased investment support these U.S.-based companies, but the end products could truly transform health care in the developing world.
Update: Another article, published in The Scientist on January 10, also addresses the urgent need for better diagnostics in resource-limited countries. In addition to making diagnostics more affordable, truly successful new diagnostics must also be “sensitive, specific, user-friendly, rapid, equipment-free and deliverable” and these considerations must be built into the R&D process. Overcoming these research challenges hinges not only on additional funding, but collaboration between research companies, the healthcare industry and local governments. Several Product Development Partnerships (PDPs) are leading the charge in these kinds of innovative collaborations. For example, the Foundation for Innovative New Diagnostics (FIND), a PDP based in Geneva, Switzerland, is working with manufacturers, health organizations and ministries of health and developing diagnostics from the initial design to the operational research phase to determine the diagnostic’s efficacy in a low resource setting. The importance of these kinds of new tests, which will result in more appropriate treatment plans that can save lives and money, cannot be overlooked.
-Morgan McCloskey, global health intern
Authors of Groundbreaking Study on Reducing Infant Mortality with Electronic Health Records Receive the 2012 Garfield Economic Impact Award
Alexandria, VA –November 15, 2012–The authors of a landmark study on the use of electronic medical records (EMRs) to reduce infant mortality will receive the 2012 Garfield Economic Impact Award. Amalia R. Miller, PhD, and Catherine E. Tucker, PhD, are being honored for their paper, “Can Health Care Information Technology Save Babies?” The award, presented by Research!America, recognizes economists whose work contributes to our understanding of the ways in which medical and health research – and new, research-based technologies and treatments – impact the economy. The award is supported by a grant from Merck & Co., Inc.
The study, published in Journal of Political Economy, provides solid evidence that creating an electronic rather than a paper interface between patient information and health care providers reduces neonatal mortality. They further demonstrated that the cost of EMRs used for this purpose is minimal when measured against the societal benefits.
“The research that underlies increasingly sophisticated health IT, including electronic medical records, is an important facet of research for health. We applaud Drs. Miller and Tucker for demonstrating in such concrete terms the value of research-based EMRs in meeting a crucial societal goal,” said Mary Woolley, president and CEO, Research!America. “Further, by demonstrating the modest cost of the use of the technology per life saved, they have made a strong economic case for investing in the research to develop similar health care tools.”
The findings are particularly important given that the U.S. has struggled for years to reduce infant mortality rates, according to the paper. Each year, 18,000 babies die in the United States within their first 28 days of life. According to the authors, this high rate of neonatal mortality means that the United States is ranked 43rd in the world and lags behind 24 of the 27 members of the European Union.
“Evaluating the cost effectiveness of medical innovation in actual practice has been challenging,” said Mark McClellan, MD, PhD, director, Engelberg Center for Health Care Reform, Brookings Institution, and a Research!America Board member. “This important research uses creative methods to overcome the challenges and provide important new evidence on cost effectiveness of electronic medical records.”
Using a 12-year county-level panel, the authors found that EMRs reduced neonatal mortality by 16 deaths per 100,000 live births. The authors credit this decrease to the fact that EMRs facilitate fast and accurate access to patient records, which improves diagnosis and patient monitoring.
Miller and Tucker will be honored at a reception at the American Association for the Advancement of Science (AAAS) building in Washington, DC, on Thursday, November 15, 2012. The reception is preceded by a post-election panel discussion about the outlook for medical research and innovation.
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 that represent the voices of 125 million Americans. Visit www.researchamerica.org.