We’re Moving to a New Home!

June 25th, 2012

Research!America has started a new blog; check out our new home here and update your bookmarks!

This site, however, will remain online as an archive. We’ve piled a lot of information in here during the past 5+ years, so there’s no reason that it shouldn’t still be publicly available. But any new posts will be added to our new blog home.

Please visit out new home, and let us know what you think!

A Weekly Advocacy Message from Mary Woolley: Sequestration, ROI and how to talk about Supreme Court Ruling

June 21st, 2012

Dear Research Advocate,

Today, the Energy and Commerce Committee, which holds authorizing (non-funding) jurisdiction over NIH, held a hearing with Dr. Francis Collins. He conveyed the tremendous progress NIH has made in fighting a variety of diseases while laying the groundwork for innovations that lead to the creation of new jobs and industries. The hearing covered a variety of health topics, including pancreatic cancer, Alzheimer’s disease and diabetes. Members raised concerns about NIH funding levels and the impact of sequester, in response to which Dr. Collins expressed serious concern about grant success rates, the future of young researchers and our nation’s competitiveness. Click here for opening statements and Dr. Collins’ testimony.

For those who opened The Washington Post today, you saw an insightful and timely op-ed by Fareed Zakaria: “How government funding of science rewards U.S. taxpayers.” He cites our booming biotechnology industry and the government investment in the Human Genome Project that ultimately made this possible. The message is that government investments in research can pay off with tremendous benefits for our health and our economy. This is an important ROI message that can help counter the threat of sequestration. Please do your part to promote this op-ed using your networks and social media – we need to spread this message far and wide! On a related note, news of the impact of sequestration on non-defense spending, including funding for cancer research, is finally gaining traction and you can read about it in today’s New York Times.

As you know, the Supreme Court is expected to make public their decision on the fate of health care reform early next week. Regardless of the outcome, the debate over health care reform underscores the priority Americans assign to their health and that of their loved ones. Our challenge as advocates is to constantly link research to health and make them, together, unassailable American priorities. During a Research!America members’ conference call in early July, we will talk more about driving this point home, but I encourage you not to wait — take the opportunity of the discussion around the Supreme Court ruling to talk about research! The future of U.S. research to improve health may hinge on a sea change in public awareness, and our role is to bring that change about.

A quick update on CDC and AHRQ funding — the news isn’t particularly good. The Senate recommended flat-funding for CDC and AHRQ received a slight cut from fiscal year 2012 levels. The House has yet to release its recommendations, and we are still far from having final budget numbers for these agencies. What we do know is that inadequate funding compromises some key building blocks of a safe society. We can’t afford that.

Research!America Board member and former NIH Director Dr. Elias Zerhouni was featured in a recent article in Forbes underscoring the pivotal role that innovative thinking, coupled with a willingness to explore new research paradigms, plays in driving medical science forward. The article also makes reference to the fundamental role NIH plays in laying the groundwork for marketable medical discoveries. It’s a reminder that federal funding for NIH, as well as federal policies that incentivize private sector investment, are both of paramount importance to our nation’s future.

Sincerely,

Mary Woolley

Research!America’s latest advocacy tool

June 21st, 2012

RAglobalhealthads2012fullhoriz

Research!America has come out with a four-part ad series titled: “Nice Save – American Ingenuity Saves Lives”. The second of these global health ads ran in POLITICO today – June 21 – look for more in the coming days! This global health R&D awareness campaign highlights the success and (sometimes unexpected) payoffs of investing in health and global health research. If you take metro, especially the red line, you will see our ads there starting July 9th as well! Please view the ad series and learn how you can make a difference here.

The Campaign for Public Health Foundation Seeks Nominations

June 21st, 2012

A few weeks ago, The Campaign for Public Health Foundation kicked off the nomination process for its annual Unsung Heroes of Public Health awards. So though some time has passed, there’s still more than enough time for you to nominate your public health hero!

As it was last year, there are three awards up for grabs: the Wavemaker Award, given to someone whose efforts have impacted a public health challenge on a large-scale basis; the Rock in the Pond Award, given to someone whose successful efforts came on a more localized level; and the Excellence in Media Award, given to a member of the media whose reporting helped illuminate topics in public health.

Nomination forms, as well as more information, are available on The Campaign for Public Health Foundation’s website. And as we’ve said, you still have plenty of time to send in your nominations — the deadline is November 1 — but don’t delay so long that you’ll forget to do it!

The Awards event is scheduled for December 4 in Washington, DC.

FNIH Offers $100K Lurie Prize

June 18th, 2012

The Foundation for the National Institutes of Health has announced that it will award $100,000 to the winner of the first Lurie Prize.

The Lurie Prize will be awarded to a “promising young scientist in biomedical research,” according to FNIH’s website. The prize is sponsored by philanthropist Ann Lurie.

Criteria for entrants is fairly broad: The restrictions include no self-nominations (but nominations can come from any member of an accredited educational or scientific institution); international entrants are welcome, so long as they don’t reside in a country that is currently subject to U.S. sanctions; nominations must be in English; and nominees must be under age 52 on April 12, 2013.

There are also five must-haves for the actual nominations: contact information for both nominee and the person who is nominating; a 50-word citation for the basis of the nomination; a 250-word description of the nominee’s contributions; and a limited C.V.

Nominees will be judged by a panel of six distinguished biomedical researchers; chairing that committee is FNIH board member Solomon H. Snyder, MD, of the Johns Hopkins University School of Medicine.

The winner will receive the prize in spring 2013 in Washington, DC.

Research!America is on Pinterest!

June 15th, 2012

We’ve joined Pinterest, the up-and-coming social sharing site. Check out our pins or, if you’re already on Pinterest, give us a follow!

The reason we joined is pretty simple: Every day, there is a lot to digest in the area of medical research funding and policy. If you care about those two areas (and particularly if you care about the intersection of those two areas), you’ll be aware of the big news. Like yesterday, when the Senate LHHS Appropriations Subcommittee debated the funding bill that included funding for the National Institutes of Health, the Centers for Disease Control and Prevention, and the Agency for Healthcare Research and Quality. That was big news, and you didn’t need to look far to find it.

But in reality, so much else happens below the radar. Each day, there are a multitude of stories out there that shows why research matters and demonstrates how it affects the world around us. We’re culling the best of those stories to share with you, keeping you more informed of what’s out there.

Currently, we have boards for research in the news and for global health. We’re always looking to expand what we’re sharing, so if you see something worth sharing, please let us know! Drop us an email at editor@researchamerica.org, contact us on Twitter or leave a note on our Facebook page.

A Weekly Advocacy Message from Mary Woolley: Right Direction; Wrong Amount

June 15th, 2012

Dear Research!Advocate,

When the chips are down, we can always count on our champions to fight for what is right, as was demonstrated today with an amendment to boost NIH funding by $1 billion from Sen. Jerry Moran (R-KS). In his remarks to the Senate Appropriations Committee, Sen. Moran quoted Research!America’s statement from our Chair, Congressman John Porter, but alas, the amendment did not pass. See today’s press statement acknowledging Sen. Moran for his leadership.

The Senate Appropriations Committee passed a $100 million increase for NIH, which unfortunately is a small fraction of what’s needed to fully empower our research enterprise. I recognize the fiscal challenges facing our country, but if we continue to make diminutive investments in research and prevention we will cede our position as the world’s leader in medical innovation and deny Americans a healthier future. As advocates, we need to get our nation back on track. See our press release on the Senate funding recommendations, which was also quoted in articles published in Nature and CQ HealthBeat.

At the time of this writing, final numbers for CDC and AHRQ have not been publically released, but will be made available after the weekend. Stay tuned for more on those agencies in my next weekly letter.

Next week, the House subcommittee with jurisdiction over NIH, CDC, and AHRQ is scheduled to release its funding recommendations, but as I’ve mentioned in previous letters, the total funding allocation available to this subcommittee is significantly less than that available to its Senate counterpart. This redoubles the pressure on this subcommittee to propose funding cuts for medical and health research. It is essential that you send an email to your representatives TODAY and drive home the message that research funding is part of the solution to our nation’s economic woes and provides the best defense against emerging health threats.

Today, the National Research Council released a report and 10 recommendations to “maintain excellence in research education.” While the most important measure of this report will be the extent to which it helps our research universities fulfill their critical missions, these universities certainly deserve notice and credit. They are pivotal for driving innovation and powering economic growth, while helping our nation maintain our global competitiveness.

In my past weekly letters, I’ve cited a variety of new reports and studies warning that our biomedical sector and its global preeminence is at risk. But it’s not too late to correct our course with adequate federal funding and some common sense policy changes at the state and federal level. That was the message of a recent op-ed published in the Tampa Bay Online by Ross C. DeVol, the Chief Research Officer at the Milken Institute. During this election season, it is critical that you engage state and local media – it’s a great way to get our message to candidates and policymakers while informing the public. With so much at stake, now is the time to pen an op-ed or letter to the editor.

Sincerely,

Mary Woolley

NHLBI Program to Advance Translational Research

June 14th, 2012

Many exciting discoveries in the areas of heart, lung and blood diseases have been happening in recent years. For these discoveries be fully utilized, new breakthroughs must be identified and moved through a complex preclinical production and testing process.  That is why the National Heart, Lung and Blood Institute (NHLBI) created a program that has been running for about 2 years called SMARTT— Science Moving towArds Research Translation and Therapy.

The goal of this program is to accelerate translation of research. SMARTT provides tailored pharmacology and toxicology testing, manufacturing services and regulatory support. The program partners with other research institutes to help speed bringing discoveries to the clinic.

The process goes like this: interested investigators submit an online application, the NHLBI SMARTT Committee evaluates the request, upon approval investigators are invited to submit a more detailed application, these second applications are reviewed by a scientific review board, and a summary of the review with recommendations is then submitted to the SMARTT Steering Committee which advises the NHLBI regarding acceptance and prioritization of these applications. The final decision is made by the NHLBI SMARTT Committee.

“By offering the SMARTT program to the scientific community, we want to make valuable preclinical development resources available to grantees and bring exciting new science to the clinic,” said Sonia Skarlatos, PhD, deputy director of the NHLBI’s Division of Cardiovascular Diseases.

Research!America Chair John Edward Porter Statement on Defeat of Senator Moran’s NIH Amendment

June 14th, 2012

Senator Jerry Moran’s amendment for a $1 billion increase for the National Institutes of Health (NIH) underscores the importance of strengthening our commitment to research and development as other nations nip at our heels on the road to discovery. Moving forward, bipartisan support will be critical for a significant funding increase that reflects the contributions of research as a driver of innovation and economic prosperity. As budget negotiations continue, we urge congressional leadership to demonstrate their support for medical breakthroughs, job growth and a surge in public-private partnerships with a stronger investment in medical research. Similarly, federal agencies – including the Centers for Disease Control and Prevention (CDC) and the Agency for Healthcare Research and Quality (AHRQ) – that protect public health, improve quality of care, address costly inefficiencies in our health care system, and empower Americans to prevent disease and disability require essential resources to advance lifesaving initiatives. We applaud Senator Moran’s leadership on such a critical issue for our nation.

Research!America Chair John Edward Porter Raises Concerns Over Slight Funding Increase for NIH in Senate Subcommittee Markup

June 13th, 2012

A statement from The Honorable John Edward Porter, Research!America Chair, on the slight funding increase for the National Institutes of Health included in the recent Senate subcommittee markup:

We are gratified the Senate subcommittee provided a modest increase for the National Institutes of Health (NIH). However, our nation cannot sustain its global leadership in research and development if the NIH is funded in dribs and drabs. We do not have the luxury of losing ground as inflation erodes NIH’s purchasing power. We must grow our investment in NIH boldly, not just because we are at the brink of unprecedented medical advances. If we don’t find treatments and cures for costly diseases like Alzheimer’s, our federal budget woes will only grow worse. Research powers innovation and innovation powers our economy. Medical treatments developed in the U.S. are exported throughout the world, driving U.S. profitability. Other nations get this. They are systematically increasing their investment in medical research to catalyze pharmaceutical and medical device sectors as robust as our own. If we let our research infrastructure and expertise falter, so will new business development, job creation and our economic potential in the global marketplace. Allocating federal funding is a matter of priorities. We ask Congress to assign as high a priority as possible funding for medical research. American lives and American jobs hang in the balance.

Neglected Tropical Diseases and Texas

June 12th, 2012

texas eventSeveral of the speakers and panelists all gathered for a group photo. From left, Joseph McCormick, MD; Karen Goraleski; Bruce Lee, MD; Jennifer Chow, director of global health R&D and public health advocacy at Research!America; Jon Andrus, MD; Peter Hotez, MD, PhD; Harold Margolis, MD; Kristy Murray, PhD; Peter Melby, MD; Susan Fisher-Hoch, MD; Maria Elena Bottazzi, PhD; and Jesus Valenzuela, PhD.

Research!America, in partnership with Sabin Vaccine Institute, Baylor College of Medicine, National School of Tropical Medicine, Texas Children’s Hospital and the American Society of Tropical Medicine and Hygiene hosted a forum, “Global Health Research and Development and the Hidden Burden of Neglected Tropical Diseases in Texas, on Thursday. The forum, attended by more than 150 people, was held at the Baylor College of Medicine in Houston – the new home to Sabin Vaccine Institute, a product development partnership supported by the Bill & Melinda Gates Foundation, and to the nation’s first school of tropical medicine.

Peter J. Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine, made opening remarks for the forum. He talked about the potentially 10 million cases of Chagas disease in North America, and more specifically, he mentioned that almost 5 million Texans live in poverty —one in five!

Joseph McCormick, MD, director of the Center for Tropical Diseases at University of Texas Medical Branch (UTMB), took the stage for a plenary lecture on the 50 years of global health in Africa, Asia, Latin America and Texas. He emphasized that we need to be persistent in continuing to work for global health justice. McCormick stated, “It’s not just a matter of disease hitting our shores, but hitting where there’s enough voices to be heard” and unfortunately that may not be in the southern U.S. or other underserved areas. We have much to learn from other nations and cultures about health and approaches to prevention. “Global health affects us politically, economically and should affect us socially,” he added.

After McCormick, the first of two morning panels took place focusing on neglected parasitic infections. Peter Melby, MD, director of the Center for Tropical Diseases at UTMB, discussed the growing threat of leishmaniasis. He said that even in the most optimistic scenario, “we found that twice as many individuals would be exposed to leishmaniasis in North America in 2080 compared to today.”

Sue Montgomery, MPH, epidemiologist at the Centers for Disease Control and Prevention, explained how more than 8 million people are affected with Chagas in Mexico, Central America and South America. Caused by a parasite found only in the Americas, there is currently no gold standard in diagnostics for Chagas. Montgomery stressed the R&D need for diagnostics, test of cure after treatment and better treatment drugs.

Jesus Valenzuela, PhD, chief of the Vector Molecular Biology Section at the National Institutes of Health, talked about sand flies and leishmaniasis being much more than just flying or crawling syringes. “When they bite, their saliva is very powerful,” he said. He expressed concern that we need partnerships among different disciplines and institutions to stay ahead of these neglected diseases.

During the Q&A, Valenzuela expressed concern about the impact of sequestration. He noted, “With these cuts our team will be smaller and our impact will be severely compromised.” Melby said, “There will be no funds in the labs to support our graduate students; the long-term impact is tremendous.” Montgomery also stated that at state health departments, “they’ve had to let staff go, curtail programs … public health in the state is hurt.” McCormick added that this may also be an opportunity for the community to find more efficient ways of working together with fewer resources.

The second panel focused on neglected viral and bacterial diseases. Kristy O. Murray, PhD, associate professor of pediatrics at the National School of Tropical Medicine, described her research project in depth; Murray’s team has found evidence of acute dengue in individuals without a history of travel. She emphasized that we need better detection, diagnostics and surveillance. Local public health partners are critical links between the research and the tracking and results.

Harold Margolis, MD, chief of the Dengue Branch at CDC, pointed out that dengue is not just a disease of poverty; it lives in places where there is a population — rich or poor — and it’s a domestic and global health problem. Dengue in U.S. travelers is the leading cause of fever/illness in returning travelers from the Americas, the Caribbean and Asia. Twenty two million Americans travel to dengue endemic countries each year. “We need surveillance, education and prevention and control tools,” Margolis said. (He also gave a sneak peek of the future: A vaccine is in the works!)

Susan Fisher-Hoch, MD, professor of department of epidemiology at University of Texas Houston School of Public Health at Brownsville, spoke about the fatal overlap between tuberculosis and diabetes. She highlighted the problem of non-communicable diseases such as diabetes in conjunction with neglected diseases and estimated that the cost of these NCDs, which are largely preventable,  will reach $47 trillion by 2030.

The second plenary of the day was conducted by Jon Andrus, MD, deputy director of the Pan American Health Organization; he spoke about the path toward vaccine introduction in the Americas. Andrus mentioned that investment in people, combined with prevention, is key. When new lifesaving vaccines are available, there is a gap between introduction from western countries to others. “We need to close that gap. We need to accelerate the policy process,” he said. “… Time equals money here. In developing countries, time equals people dying.”

In the third panel, entitled “New tools and the strategies for their development: partnership, funding and Texas research,” Rebecca Rico Hesse, PhD, MPH, scientist at Texas Biomedical Research Institute, stressed that there is no animal that develops dengue, therefore there is no other mechanism with which to study dengue, creating an additional research challenge.

Maria Elena Bottazzi, PhD, director of product development for Sabin Vaccine Institute, talked about product development and how to go from data collection to global access and distribution. Bottazzi also mentioned that new technology must be a proper fit for the burden, the country and the research and development needs.

Bruce Lee, MD, associate professor of medicine, epidemiology, and biomedical informatics at the University of Pittsburgh, closed out the third panel talking about the economic modeling to evaluate new technologies. Lee said that these tools contribute to conversations with policy makers and serve as a bridge to assist in decision making. He concluded, “These new technologies can bring hidden economic benefits, perhaps even paying for themselves – bringing cost savings as well as being cost effective.”

In his closing remarks, Hotez said that “these problems [NTDs] are just the tip of the iceberg. But since we don’t have icebergs in Texas, maybe we can call the problem the ears of the armadillo? [In addition to the health burden] there is a high economic burden that is not easy to capture. We are trying to avert morbidity costs and chronic long term conditions associated with NTDs but these do not make for good headlines. The slow burn of resources that falls below the media and policymakers’ radar cause a great burden on society. We need to be able to show this in dollars and cents – literally!”

A video of the event is available here.

Another Way to Bridge the Gap between Science and the Public: Comic Books

June 8th, 2012

It’s Friday. There’s no reason to get into anything mentally taxing, not with the weekend a few hours away.

So we’ll go low-stress today: Comic books, those hallmarks of youth (if you’re of a certain age) that helped stave off the boredom of reading a (insert your least-favorite subject here) textbook. But in recent days, we’ve been turned on to a pair of comic books that help make science more accessible.

Edward Ross, a cartoonist, writer and illustrator based in Edinburgh, Scotland, was the artistic force behind both productions.

Malaria: The Battle Against a Microscopic Killer” and “Hope Beyond Hype: A Story of Stem Cells from Discovery to Therapy” both illustrate the beginnings, successes and challenges of two very different areas of medical research. But both are done in a way that makes the science understandable for any audience. Done in collaboration with scientists in the field, the comic books are both factually sound and matter-of-fact about bumps in the road and an unknown future.

The malaria comic book takes a brief look at the long history of malaria in humans, describes the impact of the disease and details the strides made. Ross and the other authors seem to take great pains to underscore the difficulty of battling malaria; its ability to quickly adapt to new treatments is a point of emphasis (not to mention that its adaptation is still eons ahead of our own understanding). But research continues to make progress, and researchers around the globe are continually probing into what makes malaria tick.

As with malaria, the stem cell book traces the history of research, with the accompanying successes and hurdles. It does not dismiss the still-great uncertainties and controversies surrounding stem cell research; in doing so, Ross and all of the authors have created credible works.

Both were the products of European FP7 programs: OptiStem and EVIMalaR (the European Virtual Institute of of Malaria Research).

“In the end, I’m thrilled with the results,” Ross writes on his blog. “I believe these ideas benefit from being told this way, and hopefully we’ll manage to bring a sense of science to a much larger audience. Public engagement with science is a tough task, but a rewarding one too. My hope is that I get to continue pursuing these projects, hopefully getting to cover a wide breadth of science along the way, while also balancing this kind of stuff with more personal works.”

The comics are worth a read, even if the subject is elementary to you. Make a note of how they make science accessible; perhaps there are lessons so that the next time someone asks you what you do, you’ll have a ready — and easy-to-understand — answer.

A Weekly Advocacy Message from Mary Woolley: Critical Moment for Advocates

June 7th, 2012

Dear Research Advocate,

Decision-making is about setting priorities; critical decision-making will take place soon, and we must all weigh in. Next week, the Senate Appropriations Committee is scheduled to make funding recommendations for NIH, CDC and AHRQ, as well as other functions in their purview. As Research!America Chair and former Congressman John Porter has said, “Priorities will be chosen, and money will be spent. We have to be sure that our priorities are included in the discussion.” Let’s make sure health research is a top priority. Now is the time. Take 30 seconds to send an email to your representatives and share this ALERT with your networks TODAY.

As I’ve mentioned in past letters, across-the-board budget cuts (sequestration) are scheduled to take effect this January. We’re seeing increasing awareness of the impact of sequestration, which is critical for motivating action among the public and policy makers alike. Today, Rep. Ed Markey (D-MA) issued a press release citing our recent sequester report and calling on Secretary Sebelius to report on how these cuts would impact NIH and medical research. Genetic Engineering & Biotechnology News also highlighted our report, as did an article today in The Hill. With attention heating up, it is time to take a stand and join Research!America by signing your organization on to a letter developed by a broad coalition of non-defense discretionary funding stakeholders, formed to prevent further cuts to research and other key federal programs.

It’s graduation season. Coming as a welcome bit of news is that the number of Americans pursuing advanced degrees in science and engineering has rapidly increased over the past 10 years and is now at an all-time high! This is just one of the findings from a new report from the National Science Foundation. While great news for our nation — since we need a healthy stream of well-qualified graduates if we are to improve our competitiveness and keep our research enterprise thriving — what will become of these newly minted researchers, entrepreneurs and scientists if our commitment to R&D falters? This is a point you can drive home in messaging this month.

Finally, if you have taken a stand — if you have become an advocate — you know about Research!America’s long-standing awards program that salutes advocates for research. The Parkinson’s Action Network (PAN), a Research!America member, is now offering prizes for researchers who have excelled in biomedical research advocacy and community outreach. If you know a Parkinson’s researcher who deserves to be honored, be sure to nominate them. See our press statement applauding this wonderful new program.

Sincerely,

Mary Woolley

Advocacy Alert: Congress is Weighing Research Cuts, Contact Your Representatives NOW

June 7th, 2012

The United States Senate is on the verge of making major decisions on funding for medical research, and the House of Representatives faces the same critical task. There is extraordinary political pressure to cut funding and it’s important that you and all advocates step up now. Contact your Representatives and ask them to make funding increases for medical research a top priority.

Boosting our investment in research is critical to improving the health of Americans while powering our economy. Be sure to share this action alert on Facebook, Twitter and email it to your networks! Americans need to speak up for life-saving medical research. Time is of the essence!

‘The Empty Set Just Kept Getting Emptier’: The Sometimes Painstaking Lengths to Advance Knowledge

June 5th, 2012

Matt Might, PhD, a professor at the School of Computing at the University of Utah, understands what it takes to widen the circle of human understanding. (He even created a handy set of drawings to illustrate the point.)

But, one can imagine, he understands it now better than ever.

His son, Bertrand, now 4.5 years old, has a severe medical disorder; because of two recessive genes inherited from his parents, Bertrand is unable to synthesize a particular enzyme that would otherwise help recycle misfolded proteins. The odds of being born with such a condition, Matt calculates in a story on Gizmodo, are — conservatively — 1 in 4 million. But the real-world numbers are even more striking: Bertrand is the only known person in the planet to be born without this enzyme. Think of those odds: 1 in 7+ billion.

Those numbers come with hindsight. For much of the previous 4.5 years, the only hindsight was the view of dead-ends that Matt, his wife Cristina, and Bertrand had been down.

Their story shows how hard it can be to advance knowledge and how unimaginably hard it is to diagnose the previously unknown. And, as Matt indicates in a riff on his PhD drawings, research will be the way to ensure that no other child endures what Bertrand has had to endure.

Two lists help detail just what kind of an experience this has been for the Mights. According to the story — so this may not even be an exhaustive list — Bertrand or his family has dealt with his local doctors (including numerous specialists), as well as doctors or researchers at Duke University, the National Institutes of Health, the University of Utah, the Cleveland Clinic and an unnamed researcher in Toronto.

Over the course of this ordeal, here are the diseases and conditions suspected — and eventually ruled out — in Bertrand’s illness:

And, as with the doctors, this is only what is mentioned in the story.

The diagnosis isn’t the end of the story. Might notes that anyone can buy the missing enzyme that Bertrand needs, but it’s not nearly as simple as injecting it into him and watching a miracle unfold. The process is more complex than that, and at any rate, he’d need blessing from Genzyme and approval from the Food and Drug Administration.

But Might acknowledges that his son is a medical pioneer, and his trials have helped push forward knowledge. Now, a therapy is in sight. The knowledge isn’t yet there, but it could be soon.

“But, what does it mean to do the impossible? In The Illustrated Guide to a Ph.D., I talked about making dents in the boundary of human knowledge. This article contains the story of one such dent—of the messy but essential process of modern science,” Might writes in Gizmodo. “Science is the systematic transformation of the unknown into the known. It is necessarily then a transformation of the impossible into the possible.

“There is a new dent in the boundary. We’re almost there. All we need to do is keep pushing.”

Global Health R&D and Neglected Tropical Diseases in Texas

June 5th, 2012

Chagas disease, leishmaniasis and dengue fever: The names conjure images of sickened people far from our shores and equally as far from our public consciousness.

These diseases sound far away, but they’re not. They’re at our shores; they’re inside our borders; they affect Americans in America.

What can we do about them?

Top global health experts will gather Thursday to discuss solutions for neglected tropical diseases (NTDs) which are surfacing more in some areas of the Southern U.S., especially in Texas.

Peter J. Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine will open the forum. Joseph McCormick, MD, regional dean of University of Texas in Brownsville, will then direct a plenary lecture called “Fifty years of global health in Africa, Asia, Latin America, and Texas.

Panelists include leading global health experts and researchers:

Join us at Baylor College of Medicine on June 7 from 9 a.m. to 3 p.m. to hear from the experts how NTDs are also public health threats shared by the U.S., Mexico and Central America. This event aims to raise awareness of this serious global health trend and demonstrate the need for the development of new prevention, control and treatment tools and strategies.

For more information, please visit www.researchamerica.org/event_detail/id:144. Registration is required.

You can join the conversation on Twitter under the hashtag #txglobalhealth.

Statement: Research!America President and CEO Mary Woolley Commends Parkinson’s Action Network for Honoring Researchers Active in Advocacy

June 4th, 2012

Research!America salutes the Parkinson’s Action Network’s (PAN), UCB and Teva CNS for establishing an important new awards program recognizing researchers who have been active in advocacy.  This is a critical time for researchers to engage in advocacy, as lawmakers and the public debate the pros and cons of potentially severe funding cuts that could derail innovative studies focusing on Parkinson’s disease and other life-threatening illnesses.  As recipients of government grants, researchers serve the public interest and as such, must be more accountable to the public, conveying their commitment to serving the public and delivering the message, “I work for you.” We strongly believe PAN’s advocacy prizes will encourage more researchers to advocate for funding increases and cultivate more champions in Congress.

For more information about the prizes, visit www.parkinsonsaction.org/news/parkinsons-action-network-announces-75000-two-new-advocacy-awards-researchers

A Weekly Advocacy Message from Mary Woolley: Research!America Message in The New York Times

June 4th, 2012

Dear Research Advocate,

We are witnessing a reverse brain drain of scientists at its nascent stages. Such was the subject of a recent article in The New York Times, which detailed how China is offering incentives, like six-figure bonuses, to experienced university professors and researchers who return to China to conduct research, start new businesses, and teach science and technology. Meanwhile, talented foreign nationals educated here are finding it increasingly difficult to stay due to restrictive visa policies. My letter to the editor, which was published yesterday, reflects the commitment of Research!America and all our members to assuring the U.S. maintains its leadership status in science as well as our competitive edge, and urges decision makers to step up!

As the election-year debate continues over how to prioritize our tax dollars, a new poll sheds light on where the public stands. When asked to weigh in on programs supported by federal funding, 50% of Americans say they would not cut scientific research (33% are opposed to cuts to scientific research and another 17% favor an increase in funding). Of particular interest is that the percent opposing cuts is higher than 30 years ago, belying commonly received wisdom that our fellow citizens have lost their enthusiasm and support for science. Our own polling shows that Americans are concerned that the U.S. is losing its competitive edge in innovation (77% agree that we are losing our edge) and, in addition, indicates that likely voters want that trend to be reversed.

Perhaps reflecting these voter sentiments, presumptive GOP nominee Governor Romney is beginning to address the importance of research. In a white paper released by the Romney campaign last week, he said: “A Romney administration will maintain a strong commitment to research in the physical, biological and social sciences and to ensure that the priorities for research funding are not hijacked by short-term political imperatives.” See more here. Won’t you join us in asking Gov. Romney to tell us more about where he stands on other health research issues? Contact the campaign TODAY and urge the governor to complete our Your Candidates–Your Health questionnaire.

Meanwhile, here in Washington, the FDA user fee legislation I discussed last week has passed both the House and Senate by wide margins and is on the way to the president’s desk. On the Senate side, the committee that sets funding for NIH, CDC and AHRQ is scheduled to release funding recommendations during the second week of June. This committee is working with higher funding allocation levels than its House counterpart; however, funding levels are still extremely tight. It’s important to weigh in with your policy makers to urge them to assign a high priority to research for health. Take a moment now to reach out to your representatives.

Sincerely,

Mary Woolley

Video: Global Health Research and Development and the Hidden Burden of Neglected Tropical Diseases in Texas

May 31st, 2012

If you missed our June 7 global health R&D event from Texas, the videos are below!

First, the opening remarks by Peter J. Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine.

One of the event’s two plenaries, with Joseph McCormick, MD, regional dean at the University of Texas, Brownsville.

The second plenary, this one with Jon Andrus, MD, deputy director of the Pan American Health Organization.

The first panel discussion, focusing on neglected parasitic diseases, with Peter Melby, MD, director of the Center for Tropical Diseases at the University of Texas Medical Branch in Galveston; Sue Montgomery, MPH, DVM, epidemiologist at the Centers for Disease Control and Prevention; and Jesus Valenzuela, PhD, chief of the Vector Molecular Biology Section at the National Institutes of Health. Karen Goraleski, executive director of the American Society of Tropical Medicine and Hygiene, served as moderator for all of the panels.

The second panel discussion, focusing on neglected viral and bacterial diseases, with Susan Fisher-Hoch, MD, professor of epidemiology at the University of Texas Houston School of Public Health at Brownsville; Harold Margolis, MD, chief of the Dengue Branch at the Centers for Disease Control and Prevention; and Kristy Murray, PhD, associate professor of pediatrics at the National School of Tropical Medicine.

The final panel discussion, on developing new tools to combat health threats, included Maria Elena Bottazzi, PhD, director of product development for the Sabin vaccine development program at Texas Children’s Hospital and Baylor College of Medicine; Bruce Lee, MD, professor of medicine, epidemiology and biomedical informatics at the University of Pittsburgh; and Rebecca Rico Hesse, PhD, MPH, scientist at the Texas Biomedical Research Institute in San Antonio.

Closing remarks were made by Hotez.

Why NCATS’ New Program Can Make a Difference (UPDATED)

May 30th, 2012

Earlier this month, we wrote about the exciting new program that was announced at the National Institutes of Health’s National Center for Advancing Translational Sciences. The program takes abandoned compounds developed by the pharmaceutical industry and enlists academia to see if there are new uses for those compounds.

The hope, NIH Director Francis Collins, MD, PhD, said at the time, was to shorten the time from discovery to application. And that’s just one of the benefits; our polling has consistently shown that the public believes collaboration across sectors is a good thing. Moreover, there is knowledge to be gained by putting these compounds to the test; maybe one is a dud across the tests, but something discovered sparks another discovery down the line.

But this isn’t just pie-in-the-sky thinking.

Last week, the Los Angeles Times reported on a nearly parallel process that could pay big dividends in global health. According to science writer Thomas H. Maugh II, PhD, a team of researchers – led by James McKerrow, PhD, MD, and Anjan Debnath, PhD, both of the University of California, San Francisco, developed a process of screening drugs in the lab for amoebic dysentery. During their research, they were able to get their hands on 900 compounds developed by Iconix Biosciences, which was going out of business.

Debnath and McKerrow found that one compound was particularly effective against not only amoebic dysentery, but also giardiasis; its previous function had been to treat arthritis. Its potential for impact is significant: The compound, auranofin, was found to be 10 times more effective than the current drug of choice, and could cost as little as $2.50 per dose. (And if you think that matters only for the developing world, remember this: The most recent Centers for Disease Control and Prevention report focusing on waterborne disease outbreaks and other health events associated with recreational water, published in September 2011, found that in 2007-2008, 38 cases of giardiasis occurred in four states. That’s not a high number – unless you’re on of the 38.)

Maugh writes that the compound has received orphan drug status from the Food and Drug Administration, which will accelerate testing. Clinical trials are being organized to test the drug in humans.

It happened with auranofin. There’s no reason not to believe it can’t work with the NCATS program.

UPDATE: If you’re looking for another example, Reuters has one in a story published Thursday on new therapies for autism. One new therapy, developed by Cambridge, MA-based Seaside Therapeutics, includes an active ingredient from baclofen, a drug that has been used since the 1960s to treat cerebral palsy. That ingredient has been found to work particularly well against Fragile X syndrome, the most common known genetic cause of autism.