Monthly Archives: January, 2013

Statement from Research!America president and CEO Mary Woolley about AHRQ Director Carolyn Clancy’s Departure

January 31, 2013

Dr. Carolyn Clancy has been a stalwart champion of medical and health services research during her decade-long leadership at the Agency for Healthcare Research and Quality (AHRQ), stressing the importance of evidence in formulating policies to address gaps in care and improve health care delivery.  She spearheaded innovative evidence-based programs to tackle some of our most challenging and complex healthcare issues. Under her leadership, AHRQ has conducted and funded research to ensure that patient care is as safe and efficient as possible, and launched the first annual report to Congress on health care disparities and health care quality.  Clancy recognizes the importance of empowering patients with information to understand their health care needs and make informed decisions, and empowering health care leaders with the evidence needed to bring the right care to the right patient at the right time.  She generously lent her time and expertise as a speaker at Research!America’s National Health Research Forums, joining leaders of other federal health agencies for panel discussions, and contributed to other initiatives. Hers is an important and lasting legacy.

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A Weekly Advocacy Message from Mary Woolley: Sequestration will not produce a growth economy

Dear Research Advocate,

Sequestration is barreling down on us. With the clock ticking to March 1, there are disturbing indications that Members of Congress on both sides of the aisle are prepared to let sequestration move forward. It sounds much too painless to make cuts to a category called “discretionary” — the very word invites belt-tightening — not to mention that this blanket term masks the importance of the programs that would again be damaged (the Budget Control Act took the first swipe at them, and the fiscal cliff agreement, the second). We need to unleash the power of advocacy to put human faces on the rhetoric. We know the reasons research can’t be cut without severe consequences, but do your senators and your representative? It is especially timely to stress the point, made more critical as we heard the news about a decline in GDP, that boosting research investment catalyzes a growth economy.

In this time of critical congressional decision-making, we are very pleased  to report that two champions for research, Senator Burr (R-NC) and Senator Casey (D-PA), will join us at our March 13 Advocacy Awards dinner to receive the Whitehead Award for Medical Research Advocacy. Senators Burr and Casey, have — individually and as a bipartisan team — worked extremely hard to promote a robust medical research pipeline in the U.S. and to ensure patients receive new, safe and effective treatments and technologies on a timely basis. Please contact Carol Kennedy if you would like more information about the Awards dinner. Click here to see a full listing of this year’s honorees. I do hope you can join us!

The Huffington Post carried two excellent articles in support of research funding. Dr. Glenn D. Braunstein of Cedars-Sinai describes the impact of NIH research and urges Congress to avoid the “blunt ax” of sequestration. Dr. William Talman from the University of Iowa writes of the eroding buying power of NIH, which shortchanges all Americans on the return on investment and better health that result from discovery. Inside the Beltway, The Washington Post published a piece by Dr. Shirley Ann Jackson of Rensselaer Polytechnic Institute, urging Congress to “invest in what’s next.” Dr. Jackson describes the profound impact that advances in science and technology have had on our lives, many of which would have been impossible without federal support.

While the U.S. is contemplating cutbacks to science, Japan is the latest nation to announce multibillion dollar research investments as part of a concerted plan to jumpstart their innovation economy. This is a significant reversal from three years ago when Japanese lawmakers proposed deep cuts to science as part of a budget control plan. Proposals then led to protests from renowned Japanese researchers — a lesson for those who wish to keep funding for research growing even in an era of austerity. The change in the attitude of policy makers, including Prime Minister Shinzo Abe, can be surmised from his recent quote, “Of course we must aim for number one.” It’s time for stakeholders in the U.S. to do more to prevent counterproductive cuts to our own research enterprise and to assure we maintain our global leadership. I recently participated in a panel convened by the Parkinson’s Action Network that brought out the value, as well as the how-to, of advocacy. You can watch the just-released video here.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Bipartisan support is essential to science

Dear Research Advocate,

With the world listening, President Obama acknowledged the importance of science, STEM education and research to our nation’s economic competitiveness and, more generally, to the future our children face. Many Republicans have voiced similar views. While it is heartening that policy makers on both sides of the aisle believe in research, they also must cut dollars from the federal budget. The president noted this in his speech and also mentioned the need to tame rising health care costs. The intersection of research, rising health care costs, and deficit reduction is the exact spot where advocates need to jump in. As policy makers grapple with how to control health care costs, will they treat funding for biomedical and health research as part of the problem or part of the solution? As they consider deficit reduction, will the notion of investing in research as a job-producing, industry-sustaining, economic growth strategy even enter the discussions, or will research dollars be swept away as part of sequestration or ever more stringent caps on discretionary spending? The answer to both of those questions is the same: It’s up to us.

If you haven’t weighed in, consider it D-day. If you haven’t tried to recruit new advocates, now’s the time. Many, many more Americans must speak up and let their federal representatives know that medical progress is vitally important. Many, many more of us need to make the case that research is a deficit reduction strategy and essential if we are going to tackle the direct and indirect costs of diseases like Alzheimer’s and Parkinson’s. We must convince policy makers that while it may seem easier to make across-the-board cuts than to prioritize, this is counterproductive. Our polling shows that Americans don’t want the unintended consequences of across-the-board cuts. And they want biomedical and health research to be a priority. The possibility of cuts that incapacitate our health research agencies is real. Meanwhile, countries in Europe and Asia are continuing to boost investment. Funding rates for federally funded biomedical science in Germany, for example, are above 25% — quite a gap from the NIH, which is funding at historically low rates right now. All of our collective efforts now in these next few weeks — or the lack thereof — will have dramatic and lasting consequences.

An advantage we have and must maintain in the fight to save research is that support remains a bipartisan issue, championed by Republicans and Democrats alike. And that bipartisan support is long-standing, with several former Members of Congress continuing their leadership. Research!America Chair John Porter was highlighted as a Republican champion of science during his tenure in the House in a recent article in The Atlantic. Last week, former Senator Kay Bailey Hutchinson (R-TX) wrote an opinion piece pointing out that more than half of post-WWII economic growth can be attributed to technological innovation. Cite that fact in an email to the leaders of Congress, who are in the driver’s seat right now; send a copy to your representatives. You can personalize and send an email to members by clicking here.

Sincerely,

Mary Woolley

Report on Social and Economic Impact of NTDs

In November 2012, the Hudson Institute and the Global Network for Neglected Tropical Diseases released a Social and Economic Impact Review on Neglected Tropical Diseases. The report, which was the culmination of a comprehensive research and policy analysis study, outlined the economic and social impact of seven of the most common NTDs including lymphatic filariasis, onchocerciasis, trachoma, schistosomiasis, hookworm, ascariasis and trichuriasis. These diseases impose a huge economic burden by causing roughly 46-57 million years of healthy life lost due to premature death or years lived with a disability. The report also quantified the economic burden in terms of lost productivity caused by NTDs and highlighted the success of current treatment efforts. For example, trachoma, the world’s leading cause of preventable blindness, causes up to $5.3 billion in lost economic productivity each year while treatment efforts for lymphatic filariasis have saved over $24 billion in lost economic productivity.

The report argues that one of the most promising ways to treat many of these NTDs is mass drug administration (MDA), which involves treating entire populations with drugs for the seven most common NTDs. These MDA programs are also successful examples of critical public private partnerships. The combination of federal government investments in basic R&D and private sector investment in later stage R&D has produced crucial drugs that private sector companies are now donating in order to support mass drug administration programs.  These public private sector collaborations, combined with investments in research and development for new tools to control NTDs, remain one of the core recommendations from the report. Research!America will continue to advocate for federal government support for R&D for NTDs and will be working with the private sector to limit the economic devastation and healthy life years lost to these diseases.

-Chris Bennet, Senior Manager of Global Health R&D Advocacy

Briefing on the Social and Economic Impact of NTDs

On January 17, the Hudson Institute and the Global Network for Neglected Tropical Diseases held a briefing event to discuss their recently released report, Social and Economic Impact Review on Neglected Tropical Diseases. In addition to negative health outcomes, the report highlights the social and economic costs of these deadly diseases and argues that NTD control and elimination programs are a cost effective public health measure. For example, Michael Kremer, Gates professor of Developing Societies at Harvard University, discussed de-worming as an extremely cost effective development intervention. Several studies around the world, including in the southern United States, have shown that de-worming is worth our money and attention as it can lead to increased labor outputs, higher wages and better test scores among students.

Panelists at the event also paid tribute to many organizations that have altered the landscape of NTDs: the Rockefeller Foundation, whose campaign against hookworm has had a long standing effect in the American South and pharmaceutical company Merck & Co., who made an unprecedented commitment in 1987 to donate the drug Mectizan for as long as necessary for the control of onchocerciasis (river blindness). Other pharmaceutical companies have followed suit and drug donation programs are now being administered around the world. Of course, these programs would not be possible without collaborative partnerships between a host of public and private sector entities, from multilateral and government agencies to local on-the-ground operations. In addition to transforming the NTD landscape, lessons learned from these public private partnerships and other NTD control efforts have helped to inform other global health programs around the world.

Finally, Ellen Nagler, CEO of the END Fund, discussed the Fund’s private philanthropy model that allows the private sector to invest in NTD interventions for maximum impact. The END Fund provides capital resources and capacity to collaborate with governments and existing organizations to scale up treatments for individuals most at risk. Fifty cents per person to treat the seven diseases affecting 90% of the world’s poorest is a powerful return on investment. Nagler concluded that in order to raise the money necessary to reach our goals and eliminate these diseases, a lot more people will need to be educated about NTDs and their impact throughout the world. Please read Research!America’s summary of the report  in tomorrow’s post.

-Jennifer Chow, Director of Global Health R&D Advocacy

NTD Highlights of the Week: January 18th

On January 16, Uniting to Combat NTDs released “From Promises to Progress,” the first annual report on the London Declaration on NTDs. The report details the progress made by global partners that signed onto the London Declaration one year ago. Notable successes include leading pharmaceutical companies donating treatments for 100% of drug requests in endemic countries and the development of new NTD control plans in over forty countries. The past year has also seen regulatory approval for two new NTD diagnostics: a new test for lymphatic filariasis and the first rapid test for sleeping sickness developed by the Foundation for Innovative New Diagnostics.

Alongside this report, WHO also launched its second NTD report, “Sustaining the Drive to Overcome the Global Impact of Neglected Tropical Diseases.” The report targets two diseases for global eradication: guinea worm disease by 2015 and yaws by 2020. WHO also reports successes in preventive treatment, noting that 711 million people received treatment for at least one NTD in 2010 and projecting that these treatments will continue to reach more individuals in the future.  However, there is still significant work to be done. Diseases like African sleeping sickness and leishmaniasis remain extremely difficult and costly to treat. There has been a 30-fold increase in dengue in the past 50 years and there is the potential for a global dengue epidemic, but we lack the appropriate tools to control and treat the virus. Whether it is scientific research to develop new drugs or operational research to develop the most effective control plans, additional investment in NTD research is crucial. Despite these challenges, Dr. Chan, Director-General of WHO, says that “the prospects for success have never been so strong.” The more we can raise awareness about these diseases that primarily affect the 1.4 billion people under poverty, the more we can do to mobilize resources for the global fight to combat NTDs. We want to make sure we continue turning prospects into actual success.

-Morgan McCloskey, global health intern

A Weekly Advocacy Message from Mary Woolley: Inaugural topics?

Dear Research Advocate,

President Obama delivered a comprehensive plan for stemming gun violence yesterday, identifying, among other components, a renewed role for federally funded research. (Prohibitions enacted by Congress in the mid-1990s and expanded in 2011 have largely prevented federal agencies from funding firearms-related research.) An executive memorandum signed by the president on Wednesday directs CDC to conduct research on the causes of gun violence and ways to prevent it. Restrictions on research that informs federal policy are counterproductive to sound governance. With the benefit of research findings, policy makers can identify the most effective strategies for preventing firearm violence. Research!America applauds the president and joins all those who oppose restrictions on research for health. A national focus on ending gun violence will surely be a topic addressed by the president in his second inaugural address on Monday.

On the budget front, which the president will almost certainly address in his remarks, the drawn-out, kick-the-can-down-the-road approach to avoiding fiscal chaos is already taking a deep toll on our nation’s core government functions, including medical research. This message was delivered loud and clear this week in Forbes, in a piece called “Congress is Killing Medical Research” by Dr. Steven Salzberg of Johns Hopkins School of Medicine. Share this terrific editorial with your networks, and make sure your elected officials have read it too! You can use our web tool to find contact information for your federal representatives. The damage of the current fiscal situation was also called out in an article by Richard Craver in the Winston-Salem Journal, describing how Wake Forest Baptist Medical Center is being hit with a “triple whammy.”

In an interview with Politico, Dr. Francis Collins, director of the NIH, said sequestration would deal a “profound and devastating blow” to medical research. In 2011, the NIH budget was reduced by 1.5% and has continued to lose ground to inflation, which has eroded the agency’s ability to support lifesaving research by 20% since 2003. Dr. Collins also highlighted shrinking grant success rates; now just 1 in 6 applications are funded. This has a terribly demoralizing effect on young researchers and patients alike. Email your representatives now, and urge them to end sequestration once and for all.

Will the president use the platform of the inaugural address to underscore the importance of health and medical research? From preventing gun violence to ending the costly scourge of Alzheimer’s and so many other ailments, there are profoundly important reasons to assign a top priority to solutions research can and will identify, given adequate support. Advocates for research look to the president to take a leadership role; so does the American public, 72% of whom want biomedical and health research to be a priority for the president and for the new Congress in its first 100 days.

Sincerely,

Mary Woolley

Importance of Affordable Diagnostics

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

As Flu Outbreak Sweeps Across Nation, Vaccines are Key to Prevention

This week, Boston Mayor Thomas M. Menino declared a public health emergency in the city due to a flu outbreak. City officials have confirmed 700 cases of the flu, nearly ten times the confirmed cases last year; four people have died so far. Outbreaks have been reported in other areas of the country, affecting individuals of all ages and backgrounds.

The Centers for Disease Control and Prevention recommends that the best way to prevent the flu is by getting vaccinated each year. It’s hard to imagine the dire health consequences Americans would endure without the flu vaccine, which is due in part to federal investments in research. The CDC and the Food and Drug Administration have made efforts to improve production capacity, including improving guidance about the approval process, working with manufacturers to ensure adequate supplies of vaccines are available for the general population, and researching different strains of the virus that surface each flu season.

The Influenza Genome Sequencing Project, funded by the National Institute of Allergy and Infectious Diseases, is helping researchers understand how flu viruses evolve, spread and cause disease. As of January 3, entire genetic blueprints of more than 10,000 human and avian influenza viruses taken from samples around the world have been completed. The project is helping scientists understand how influenza viruses evolve and spread, thereby keeping Americans healthy.

The best way to stay healthy this flu season is to heed to the recommendation of public health officials: Get vaccinated!

A Weekly Advocacy Message from Mary Woolley: First 100 Days

Dear Research Advocate,

With all the conversation about the debt ceiling and tax and entitlement reform, it may surprise you to know that an additional topic is on many minds. A wide majority of Americans, 72%, say the new Congress and the president should take action to expand medical research within the first 100 days of the new legislative session. See this and more in America Speaks, Volume 13, a compilation of national poll data providing insights into public sentiment on key research-related issues. See our press release and download the full Poll Data Summary. These polling results are designed to be used in your advocacy and outreach!

Among the growing number of issues that need to be resolved by the new Congress is the medical device tax, which could send research jobs overseas and shrink a critical segment of our innovation economy. In The Hill, Rep. Bob Latta (R-OH) writes about the consequences the tax could have on the medical device industry, including the possibility of a massive decline in R&D investment. As our economy recovers, policy makers must better incentivize R&D investment to keep our nation competitive and ensure that companies are continuing to invest in life-saving research.

More on the first 100 days: As you know, the sequestration deadline has been moved two months, with another delay possible, and there is talk of other cuts to discretionary spending. The delay is terribly frustrating for those planning research investment and sends a very negative message to young scientists planning a career, but it does buy us more time to make our case. The Washington Post published an op-ed by three Washington, DC, institutional members of Research!America that argues compellingly for such funding. Take action now and do two things — collaborate with your local colleagues to write an op-ed for a local publication and send an email to your representatives. Tailor the alert we provide to let them know how cuts could affect your institution and your community.

For those of you in Georgia, the appointment of Rep. Jack Kingston (R-GA) as chairman of the committee that allocates most of the federal funding for biomedical and health research funding presents an important advocacy opportunity. Research!America is helping to facilitate collective action by Georgia institutions, and we would welcome your participation. Please contact Max Bronstein, director of science policy, if you haven’t heard from us yet! Recently, I had the opportunity to discuss Rep. Kingston’s record and prospects for the 113th Congress with Randy Barrett of the ScienceInsider.

Great news! The U.S. Supreme Court issued a decision on behalf of patients and stem cell researchers, effectively bringing to a close the infamous Sherley v. Sebelius case that threatened federal funding for embryonic stem cell research. This decision marks a major victory for the stem cell research cause, but it is critical that all of us remain vigilant; actions at the state level could still curtail embryonic stem cell research. View our press statement on the decision and our updated resource page on stem cell research. We will be talking about the importance of stem cell research when we honor the California Institute for Regenerative Medicine (CIRM) at our upcoming Advocacy Awards dinner. See more about this March 13, 2013, event here.

Sincerely,

Mary Woolley

Majority of Americans Say the New Congress Should Take Immediate Action to Expand Medical Research

New Poll Data Summary reveals concerns among Americans about medical progress even in tight fiscal environment

Alexandria, Va.January 9, 2013America Speaks, Volume 13, a compilation of public opinion polls commissioned by Research!America, features timely data about Americans’ views on issues related to biomedical and health research. A majority of Americans (72%) say the new Congress and the President should take action to expand medical research within the first 100 days of the 113th Congress.  Public support for increased government spending on medical research holds particular relevance as Congress considers whether to further delay, eliminate or permit “sequestration,” a budget cutting process that – if it moves forward – would mean drastic cuts in funding for medical research.

“Americans will be looking closely at the actions of the new Congress to see whether lawmakers support policies that will accelerate research and scientific discovery,” said Research!America Chair John Edward Porter. “We’re on the brink of finding new treatments and cures for many deadly and debilitating illnesses. Congress must act to ensure that funding for research is sufficient to address current and emerging health threats.”

Most Americans believe accelerated investments in medical research should be a priority, yet nearly 60% say elected officials in Washington are not paying close attention to combating the many deadly diseases that afflict Americans. An overwhelming majority of Americans (83%) also believe that investing in medical innovation has a role in creating jobs and fueling the economy.

When asked about stagnant federal funding levels for research and the impact to science and technology, a wide majority (85%) said they were concerned.

Americans also expressed concerns about U.S. global competitiveness in the near future. Less than half (41%) believe the U.S. will be the world leader in science and technology in the year 2020. In addition, almost half (48%) do not believe the U.S. has the best health care system in the world.

“Consistently, our polls have shown that Americans value research and believe it’s part of the solution to what ails us,” said Research!America President and CEO Mary Woolley. “The return on investment is demonstrated in medical breakthroughs that have made diseases that were considered a death sentence into treatable conditions.”

Twenty years ago, AIDS ranked as the number-one health concern among Americans. Since then, research has saved countless lives and continues to drive progress. The number one health concern in 2012 was the cost of health care.

Among notable highlights in the booklet:

  • 78% of Americans believe that it is important that the U.S. work to improve health globally through research and innovation.
  • 70% of Americans believe that the government should encourage science, technology, mathematics and engineering (STEM) careers.
  • Nearly half (48%) believe government investment in health research for military veterans and service members is not enough.
  • 66% of Americans are willing to share personal health information to advance medical research if appropriate privacy protections were used.
  • 75% say it’s important to conduct research to eliminate health disparities.
  • Only 1 in 5 (19%) know research is conducted in every state.

To view America Speaks, Volume 13, visit: http://www.researchamerica.org/uploads/AmericaSpeaksV13.pdf

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.

Online polls are conducted with a sample size of 800-1,052 adults (age 18+) and a maximum theoretical sampling error of +/- 3.2%. Data are demographically representative of adult U.S. residents. Polling in this publication was conducted by Zogby Analytics and Charlton Research Company.

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.

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Research!America President and CEO Mary Woolley Applauds Supreme Court’s Dismissal of Embryonic Stem Cell Case

January 9, 2013

The U.S. Supreme Court’s dismissal of Sherley v. Sebelius, a case intended to block federal funding for scientists conducting embryonic stem cell research, is a victory for patients and the research community. This key decision will allow the continuation of federal funding from the National Institutes of Health, providing essential support for scientists to conduct lifesaving research. Embryonic stem cells, which can repair or replace damaged tissue and organs, have advanced research aimed at finding cures and therapies to treat a wide variety of diseases and disorders including vision impairment, spinal cord injuries, and multiple sclerosis.  Clinical trials have also shown promising therapeutic applications to help fight cancer, Parkinson’s disease, diabetes and other disabling illnesses. We applaud the ruling and will continue to support such innovative research that could save millions of lives.

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Supreme Court Rejects Request to Ban Federally Funded ESCR

The U.S. Supreme Court announced Monday that it would not hear a case that challenged the legality of federally funded human embryonic stem cell research.

The case, Sherley v. Sebelius, was brought by two researchers of induced pluripotent stem cells, James Sherley, MD, PhD, and Theresa Deisher, PhD in 2009. They argued that guidelines concerning government funding of hESC, adopted by the Obama administration, were in violation of the 1996 Dickey-Wicker Amendment. The amendment forbids the Department of Health and Human Services — including the National Institutes of Health — from using appropriated funds to either create embryos for research purposes or conduct research in which embryos are destroyed.

After an initial ruling in 2010 in favor of the plaintiffs, an injunction was issued that allowed research to continue. Eventually, both the U.S. District Court for the District of Columbia and the U.S. Court of Appeals for the D.C. Circuit found in favor of the government. The plaintiffs appealed the case to the Supreme Court, which declined to hear the case and offered no further comment in Monday’s order.

Stem cell research advocates were pleased with the ruling.

“This is a major victory for scientifically and ethically responsible innovative research,” Bernard Siegel, spokesperson for the Stem Cell Action Coalition and executive director of the Genetics Policy Institute, said in a statement. “With the cloud of this case lifted, researchers can now rest assured that the challenge to the NIH’s 2009 guidelines for funding for embryonic stem cell research is over. Patients and their advocates can now rejoice that this potentially life-saving research can proceed at the federal level.”

The ruling is “a victory for scientists, patients and the entire biomedical research community. Science can now continue to move forward, knowing the threat to promising research and funding has been eliminated,” said Amy Comstock Rick, president of the Coalition for the Advancement of Medical Research, according to ScienceInsider.

In a statement, NIH Director Francis Collins, MD, PhD, reaffirmed the agency’s dedication to ESCR.

“I am very pleased with today’s decision by the U.S. Supreme Court to decline to review the Sherley v. Sebelius U.S. Court of Appeals ruling. This decision allows the ruling to stand, and enables NIH to continue conducting and funding stem cell research, following the strict ethical guidelines put in place in 2009. Patients and their families who look forward to new therapies to replace cells lost by disease or injury, or who may benefit from new drugs identified by screening using stem cells, should be reassured that NIH will continue supporting this promising research.”

NTD Highlights of the Week: January 4th

As we ring in the New Year, 2013 promises to be an exciting time to be involved in the fight to raise support and awareness for neglected tropical diseases. As the world becomes more interconnected and global warming changes disease patterns, NTDs are increasingly spreading across borders – including right here at home. For example, Slate recently published an article addressing the return of dengue in the United States. In the past few years, dengue has sickened hundreds in Florida and other southern states. Experts warn that the combination of the virus, a lack of immunity to dengue and widespread mosquitoes provide the perfect storm of conditions for larger dengue outbreaks in the U.S.

As the spread of NTDs adds urgency to the fight, scientists continue to work every day to develop innovative ideas to combat NTDs. In a trial experiment in Africa, researchers are testing the ability of prawns to combat schistosomiasis. A parasitic disease that can be fatal, schistosomiasis is spread through water snails. Prawns are the primary consumers of snails, so researchers hope that re-introducing prawns to rivers at the African test site will help decrease transmission of the disease. In addition to innovative experiments, every week there are reports of new scientific breakthroughs that will help save lives.  Just last week, the FDA approved a drug to fight drug resistant tuberculosis, the first new drug for the disease in over four decades. Developed by Johnson & Johnson, the drug cures patients in less time than older treatment options. It is these kinds of innovations and breakthroughs that demonstrate the power of research investments and the importance of research for global efforts to eliminate neglected diseases. Be sure to check back soon for new NTD highlights!

Morgan McCloskey, global health intern

A Weekly Advocacy Message from Mary Woolley: Going Viral as we Face the Next Cliff

Dear Research Advocate,

The two-month reprieve from sequestration agreed to as part of the “deal” to avert the fiscal cliff is a partial victory for all who worked hard to save research, giving us much-needed additional time to make our case.  We need be smart in using that time well,  because the delay was paid for through a combination of new revenue and spending cuts that could further drain the pool of dollars used to fund research. The fact that many conservative members of Congress expressed outrage that the fiscal cliff deal didn’t include larger spending cuts underscores this point. The debt ceiling will need to be raised within the next two months, adding fuel to the fire. And efforts to pass a budget for fiscal year 2013 rather than rely on a full-year continuing resolution throws another variable into the mix.

The bottom line is that the scenario for the next few months leaves science quite vulnerable, as reported in Scientific American, in which Research!America VP Ellie Dehoney is quoted. The palpable uptick in articles and opinion pieces raising awareness about the ongoing threat to research from a wide variety of stakeholders, including the Huffington Post piece by Research!America Board member Dr. Victor Dzau, president and CEO of the Duke University Health System, must continue; in fact we have to go into overdrive. In my last letter, I shared a CBS Evening News segment we worked to arrange about the impact of sequestration – I’m told it has gone viral! Please keep the momentum going by sharing it with your networks.

As you may know, Rep. Jack Kingston (R-GA) has been named chairman of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee, which sets funding for NIH, CDC and AHRQ. Rep. Kingston previously chaired the subcommittee on Agriculture, Rural Development, and the Food and Drug Administration. He was supportive of increases for FDA despite the budget-cutting pressure that faced the 112th Congress. Rep. Robert Aderholt (R-AL) has been named chairman of the agriculture subcommittee. Rep. Aderholt has demonstrated an interest in combating disease and disability. We look forward to working with these leaders and their Democratic counterparts to secure the resources that research-related agencies need to fulfill their multi-faceted missions.

In the wake of the tragedy in Newtown, the White House is looking for feedback on anti-violence strategies from organizations in the mental health community. The email address is policyideas@ovp.eop.gov. Note that the deadline is January 5. The Cure Alliance for Mental Illness has launched a petition calling on Congress and the president to increase funding for mental illness research. Our community will have an important role to play in ensuring that time does not dilute the urgency behind efforts to reduce violent acts like that in Newtown. Research is undoubtedly part of the answer.

Sincerely,

Mary Woolley